ADVANCE CARE PLANNING RESOURCES

Transcription

1 ADVANCE CARE PLANNING RESOURCES

2 End-of-Life Care Conversations: Medicare Reimbursement FAQs The changes in Medicare reimbursement policy that went into effect January 2016 provide an opportunity for more clinicians and patients to engage in conversations about preferences for care at the end of life. However, many people are confused about where to start. Whether you are uncertain about the new rules for CMS reimbursements or about starting those conversations with patients, this document will help you understand this new landscape for end-of-life care conversations. Before getting started, check to see if a local coverage determination has been made, and check with your local billing expert to ensure your practice is compliant with their recommendations. Make sure that the new reimbursement codes have been added to your system s billing apparatus. These codes may not be available until your facility approves them for use. 1. Do these new codes need to be used in the context of an illness? No. In fact, any medical management must be billed separately. 2. What are the new advance care planning (ACP) codes from CMS that became active in 2016? ACP, including the explanation and discussion of advance directives, such as standard forms (with completion of such forms, when performed), by the physician or other qualified health professional Each additional 30 minutes (list separately in addition to code for primary procedure) 3. How much time must be spent to use the new codes? More than half of each interval must be used. For example: Use if you meet or exceed 16 minutes. Use if you meet or exceed 46 minutes. 4. Does the conversation have to be in-person to use the new codes? Does it have to be with the patient? The conversation has to be in-person (you cannot use the code for telehealth), but it doesn t have to be with the patient. It can be with a surrogate or family members. 5. What are the documentation requirements? Total time in minutes Patient/surrogate/family given opportunity to decline Details of content (e.g. Who was involved? What was discussed? Understanding of illness, spiritual factors. Why are they making the decisions they are making? Was any advance directive offered/filled out? Follow-up) 6. What costs might patients incur from these codes? When a provider discusses advance care planning with a patient at his/her Annual Wellness Visit, there is no cost to the patient. However, if the provider has an ACP conversation at other times, Part B cost sharing applies and the patient may be responsible for copay/coinsurance. 7. How much do payers reimburse for these codes? = 1.5 RVUs = 1.4 RVUs 8. Are there limits to the number of times that the new codes can be used? There are no limits to the number of times the codes can be used. ACP can be readdressed as needed with a change in condition. Each time they are used, should be used for the first 30 minutes and should be used for each additional 30 minutes. 9. Which health care providers can be reimbursed for having ACP discussions with patients under the new rule? Can physicians charge for the codes if another staff member engages the patient in the ACP discussion? Physicians (MDs and DOs), nurse practitioners (NPs), and physician assistants (PAs) (i.e. those who are authorized to independently bill Medicare for Current Procedural Terminology (CPT) services) are the only providers who can use these codes. Incident to rules apply in the outpatient setting. This means that a provider can use these codes if they perform an initial service and a non-billing team member (e.g., registered nurse, social worker) helps deliver part of the service, with ongoing direct supervision and involvement of the billing provider. Example: The physician starts an ACP conversation, then says, I d like to introduce you to our nurse who will talk with you about choosing a surrogate medical decision maker and discuss with you how you might have a conversation with that person, then debriefs afterwards with the patient. Work with your local billing expert regarding incident to rules. 10. How can physicians bill for these conversations for non-medicare patients? If the patient has private insurance, find out if ACP conversations are covered. Otherwise, you can use counseling and coordination of care codes, but only in the context of a serious illness.

3 Having the Conversation at Three Life Stages: A Guide for Providers Sample Case Progression Conversation Goals Examples of What to Say No Serious Illness Serious Illness Advanced Serious Illness Ms. Smith is a 68-year-old woman with hypertension, hyperlipidemia, and history of smoking. She was recently diagnosed with emphysema/copd. She s coming in for a routine follow-up for her hypertension with her daughter. Build trusting and respectful relationships Learn about the patient as a person Establish a surrogate decision maker Promote patient-surrogate-family conversations Normalize the conversation Try starting it after family history Have you ever thought who would speak for you if you couldn t speak for yourself? Is it ok if we talk about that? If they already have an advance directive (AD): May I see it? What does it say? If they do not have an AD: Can I offer you some tools to start thinking about it? At age 71, Ms. Smith developed a COPD exacerbation, which turned into a pneumonia with significant shortness of breath. She was admitted to the hospital. She was sick enough to require BIPAP and was in the ICU. Eventually, she recovered and was discharged home. She is now in your office for routine follow-up. Continue to build trusting, respectful relationships Continue to learn more about the patient as a person Ensure a good understanding of diagnosis, prognosis, and treatment options Anticipate emergencies and make a plan when appropriate Promote patient-surrogate-family conversations Talk about what matters most Can you tell me your understanding of what happened in the hospital? What was that like for you? How are you doing now? If surrogate decision making was needed, how was that? Identify the values that guided decision making, i.e., what mattered most Now 75 years old, Ms. Smith has had a couple admissions for less severe COPD exacerbations. She was eventually placed on home oxygen, and then about 2 months ago her illness seemed to progress. You talk more, and it becomes clear that she doesn t want to have to go back to the hospital if it isn t necessary. She really prefers to stay at home. Rely on the trusting, respectful relationships that were built Keep the focus on the patient as a person Ensure a good understanding of diagnosis, prognosis, and treatment options before introducing hospice Continue to hope for the best, but prepare for when things don t go well You have been in and out of the hospital quite a bit. How has that been? How do you feel about your quality of life? Given everything that has happened, what are you hoping for? Unfortunately, we don t have any more treatments to help your lungs get better. It seems to me what matters most to you is to [stay out of the hospital, control your symptoms at home, and make the most of each day OR stay out of the hospital but continue to receive treatment] and I think [hospice OR home care] is the best way of doing that. Billing Details New Codes from CMS Use if you meet or exceed 16 minutes Documentation Requirements Total time in minutes Patient/surrogate/family given opportunity to decline Details of content Attending MDs and DOs, as well as NPs and PAs (i.e., those who are authorized to independently bill Medicare for CPT services), are the only providers who can use these codes. Use if you meet or exceed 46 minutes If medical management billing is based on medical decision making, then you can bill as you normally would in that scenario. On top of that, you should also bill based on time spent for ACP. If instead you are billing for the medical management based on time, you should be sure you do not double count the time spent on the advance care planning conversation. The information contained in this document is based on our best understanding of the new reimbursement codes. It is your responsibility to check with your local billing expert before using the new codes. Please review our full disclaimer of warranties and liability at

4 VALUE SNAPSHOT Advance Care Planning Advance care planning promotes compliance with patients wishes and improves satisfaction Advance care planning (ACP) extends patient autonomy by allowing individuals, particularly those with progressive illness, to reflect on and articulate their preferences for medical care in advance of medical crises that might impede their ability to speak for themselves. Through the mechanisms of open communication and the explicit documentation of preferences, ACP can help patients and families have greater control over how and where they engage with the health care system. By promoting concordance between care delivered and patient preferences, ACP programs have positive effects on patient and family satisfaction and mental health. Several recent trials and well-designed cohort studies have validated these claims. For example, Morrison and colleagues found that in nursing homes that provided ACP education and discussions, residents were more likely to have their preferences documented (p<0.01) for CPR, artificial nutrition, intravenous antibiotics, and hospitalization, and were much more likely to have their wishes respected (p<0.04). 1 ACP is also valued by patients and families. In a randomized trial that studied the impact of a complex ACP program, Detering and colleagues found that satisfaction was higher among patients and families who received ACP, and that family members of patients who died had significantly less post-traumatic stress (p<0.001), anxiety (p=0.02), and depression (p=0.002) than did families of patients who received usual care. 2 ACP discussions were also associated with earlier hospice referral, which was in turn associated with improved patient and family quality of life % 80% 60% 40% 20% 0% ACP Impact on Patient and Family Satisfaction 2 Very satisfied Satisfied Not satisfied Very satisfied Satisfied Not satisfied Patient Satisfaction Family Satisfaction Intervention Control ACP Impact on Knowledge of and Compliance with Patient Wishes 1 100% Intervention 80% Control 60% 40% 20% 0% Wishes known and followed Wishes unknown Wishes known but not followed 1. Morrison RS, Chichin E, Carter J, et al. The effect of a social work intervention to enhance advance care planning documentation in the nursing home. J Am Geriatr Soc 2005; 53(2): Detering KM, Hancock AD, Reade MC, et al. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010; 340: c Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008; 300(14): Kathleen Kerr, Kerr Healthcare Analytics Developed with support from the California HealthCare Foundation CoalitionCCC.org (916) January 2015

5 VALUE SNAPSHOT Advance Care Planning Advance care planning reduces health care costs Advance care planning (ACP) supports patients and families in discussing and documenting care preferences, with the goal of ensuring that the care patients receive is aligned with their goals, values and priorities. In many instances, when asked about their preferences, patients and families will prioritize remaining in the home vs. going to the hospital, and favor comfort and quality of life over invasive care that may carry limited benefits. In such situations, when patient preferences are honored, the resulting changes in the way patients engage with the health care system result in lower overall health care costs. These effects have been demonstrated in several published studies. In another study of the effects of a complex ACP program deployed in nursing homes, Levy et al. found that following implementation, residents were less likely to die in the hospital (48.2% pre-intervention vs. 8.9% post-intervention, p<0.0001). 3 Every resident who died after ACP program implementation had an advanced directive (p=0.03), and residents were more likely to be referred to palliative care (7.4% pre-intervention vs. 31.1% post-intervention, p=0.02). Residents Residents Dying Dying the in Hospital the Hospital Before Before and and After ACP Program Implementation % 50% 40% 30% In a multisite randomized controlled trial of ACP in nursing homes, Molloy et al. found that per patient health care costs were substantially lower in nursing homes that implemented the ACP intervention (average difference of $1,749CAN; p=0.01). 1 Nursing homes that implemented the intervention also saw fewer hospitalizations per patient (p=0.001) and a lower average number of days spent in hospital (p=0.01). Per Per Patient Costs Following ACP Implementation 1 $6,000 $5,239 $5,000 $4,000 $3,669 $3,490 $3,000 $2,000 $1,772 $1,606 $1,370 $1,000 $113 $0 $0 Hospitalization costs Nursing home drug costs ACP Implementation Total Costs Intervention Homes Control Homes 20% 10% 0% Pre-ACP intervention Post-ACP Intervention ACP impact on utilization was also seen in a study of the effects of end-of-life discussions between patients with advanced cancer and their physicians. Wright and colleagues found that end-of-life discussions were associated with lower rates of ventilation (adjusted odds ratio [OR], % confidence interval [CI] 0.08, 0.83), resuscitation (adjusted OR 0.16 [0.03, 0.80]), ICU admission (adjusted OR 0.35 [0.14, 0.90]), and earlier hospice enrollment (adjusted OR 1.65 [1.04, 2.63]). 2 More aggressive medical care was associated with worse patient quality of life and higher risk of major depressive disorder in bereaved caregivers, whereas longer hospice stays were associated with better patient quality of life. 1. Molloy DW, Guyatt GH, Russo R, et al. Systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. JAMA 2000; 283(11): Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008; 300(14): Levy C, Morris M and Kramer A. Improving end-of-life outcomes in nursing homes by targeting residents at high risk of mortality for palliative care: program description and evaluation. J Palliat Med 2008; 11(2): Kathleen Kerr, Kerr Healthcare Analytics Developed with support from the California HealthCare Foundation CoalitionCCC.org (916) January 2015

6 Advance Care Planning Communication Guide: Overview Ver sion 4.0 Tool The INTERACT Advance Care Planning Communication Guide is designed to assist health professionals who work in nursing homes to initiate and carry out conversations with residents and their families about goals of care and preferences at the time of admission, at regular intervals, and when there has been a decline in health status. The Guide can be useful for education, including role-playing exercises and simulation training. Communicating about advance care planning and end-of-life care involves all facility staff Physicians must communicate with residents and families about advance directives, but all staff need to be able to communicate about goals of care, preferences, and end-of-life care This Guide should therefore be useful for: Nursing staff Primary care physicians, nurse practitioners, and physician assistants Social workers and social work designees Administrators and others who discuss goals of care with residents and family The Guide may be helpful in discussions on: Advance Directives such as a Durable Power of Attorney for Health Care document, Living Will, and POLST and other similar directives Plans for care when a sudden, life-threatening condition is diagnosed such as a stroke, heart attack, pneumonia, or cancer Plans for care when a resident s health is gradually deteriorating such as progression of Alzheimer s disease or other dementia; weight loss without an obvious medical cause; and worsening of congestive heart failure, kidney failure, or chronic lung disease Considering a palliative or comfort care plan or enrolling in a hospice program 2014 Florida Atlantic University, all rights reserved. This document is available for clinical use, but may not be resold or incorporated in software without permission of Florida Atlantic University.

7 Advance Care Planning Communication Guide Part 1: Tips for Starting & Conducting the Conversation Ver sion 4.0 Tool Set the Stage 1. Get the facts understand the resident s conditions and prognosis. 2. Choose a private environment. 3. Determine an agenda for the meeting and who should be present. 4. Allow adequate time usually these discussions take at least 30 minutes. 5. Turn cell phone or beeper to vibrate to avoid interruptions and demonstrate full attention. 6. If the resident is involved, sit at eye level with her or him. 7. Have tissues available. Initiate the Discussion 1. Describe the purpose of the meeting. 2. Identify whether the resident wants or already has a spokesperson and who it is. 3. Ask what the resident and/or family understand about advance care planning. 4. Ask about their goals for care Most nursing home residents and their families are more concerned about comfort than life prolongation. This opens the door to discuss palliative care and comfort care plans. Attempt to understand underlying rationale for the goals ( i.e. I ve lived long enough, now I m ready to meet God, or I want to keep on living until my granddaughter graduates college next spring. ). This provides insight into specific decisions that are made. Initiate the Discussion 1. Use simple language. 2. Briefly discuss: Cardiopulmonary arrest and CPR* Artificial Hydration/Nutrition (tube feeding**) Palliative care, comfort care orders*** and hospice if appropriate. Cardiopulmonary Arrest and CPR* 1. Initiate discussion of Cardiopulmonary Resuscitation (CPR). e.g. Sometimes when peoples hearts stop, doctors and nurses try to delay the dying process have you considered whether you would want this or not? 2. Discuss some facts: Cardiopulmonary arrest is the final common pathway for everyone when they die. Not all deaths should involve CPR. The possibility of surviving CPR in a nursing home is very low, and CPR often results in broken ribs and the need for a respirator ( breathing machine ) in an intensive care unit. A request to not perform CPR (a Do Not Resuscitate (DNR) Order) does not alter care it only prevents CPR if the resident is found without a heart beat or not breathing. * ** *** See INTERACT Education on CPR See INTERACT Education on Tube Feeding See INTERACT Comfort Care Orders (continued) 2014 Florida Atlantic University, all rights reserved.

8 Advance Care Planning Communication Guide Part 1: Tips for Starting & Conducting the Conversation Ver sion 4.0 Tool (continued) Artificial Hydration/Nutrition (tubefeeding)** 1. Initiate discussion of feeding tubes: Many nursing home residents gradually lose the ability to eat, drink, and swallow. In this situation a tube can be placed in the stomach to provide water and nutrition. Have you considered whether you would want this or not? 2. Discuss some facts: Feeding tubes have not been shown to prevent pneumonia or prolong life for most nursing home residents. Placement of a tube requires minor surgery, and can have some complications. A request to not place a tube does not alter care residents will be provided oral fluid and nourishment as long as it is comforting for them. People who do not get feeding tubes generally gradually slip into a comfortable coma within a few days and die comfortably. Palliative Care and Comfort Care Orders 1. Review overall goals for care and the importance of comfort and quality of life regardless of advance directives 2. If the goal of care is comfort: Offer to provide and review educational materials on palliative care. Describe examples of comfort care orders.*** Discuss limiting hospitalization only for the purpose of improving comfort, not to prolong life. If appropriate, provide information about palliative and/or hospice care. End the Discussion 1. Ask: Do you have any questions? 2. Emphasize that the role of the nursing home is to ALWAYS provide comfort no matter what the goals of care. 3. Offer to have a follow-up meeting if indicated. 4. Stand an effective way to end the conversation. ** *** See INTERACT Education on Tube Feeding See INTERACT Comfort Care Orders 2014 Florida Atlantic University, all rights reserved.

9 Advance Care Planning Communication Guide Part 2: Communication Tips Ver sion 4.0 Tool Tips Examples Establish Trust Encourage residents and families to talk Recognize resident and family concerns, but do not put down other health care providers Acknowledge mistakes Be humble Demonstrate respect Do not force decisions Tell me what you understand about your illness. Help me get to know you better tell me about your life before you came to this nursing home. How are you coping with your illness? I understand that you didn t feel heard by other doctors/nurses. I d like to make sure you have a chance to voice all of your concerns. It sounds like Dr. X left you very hopeful for a cure. I m sure he really cares for you, and it would have been wonderful if things would have gone as well as he/she wished. You are absolutely right. Four days was too long to wait for that [test or procedure]. I really appreciate what you have shared with me about the medication we prescribed. It is clear that it is not right for you. I am so impressed by how involved you have been with your [relative] throughout this illness. I can tell how much you love her/him. We ve just had a very difficult conversation, and you and your family have a lot to think about. Let s schedule another meeting and see how you feel about things then. Attend to Emotions Attend to the emotion Identify loss Legitimize feelings Explore Offer support Is talking about these issues difficult for you? Making these decisions is not easy. I bet it s hard to imagine life without your [relative] I can see how close you are to her/him. It s quite common for someone in your situation to have a hard time making these decisions it can feel like an enormous responsibility. Of course talking about this makes you feel sad it wouldn t be normal if it didn t. You ve just told me you feel scared. Can you tell me more about what scares you most? No matter what the road holds ahead, I m going to be there with you. Communicate Hope Hope for the best, but prepare for the worst Reframe hope Focus on the positive Have you thought about what might happen if things don t go as you wish? Sometimes having a plan to prepare for the worst makes it easier to focus on what you hope for most. I know you hope your illness will improve. Are there other goals you want to focus on? Some treatments are really not going to help and may make you feel worse or uncomfortable. But there are a lot of things we can do to help you let s focus on those. What sorts of things are left undone for you? Let s talk about how we might be able to make these happen Florida Atlantic University, all rights reserved.

10 Advance Care Planning Communication Guide Part 3: Helpful Language for Discussing End-of-Life Care Ver sion 4.0 Tool Issue Identify other decision makers Helpful Language Is there anyone you rely on to make important decisions? Define goals for care What do you hope for most over the next few months? Is there anything that you are afraid of? Reframe goals I wish we could guarantee you will be alive for your [event], but unfortunately we can t. Perhaps we can work on a letter to read on that day, so people will know you are there in spirit in case you cannot be there. Identify needs for care? What types of treatments do you think will help you the most? Summarize and link goals with care needs I think I understand that your main goals are to be comfortable and alert enough to spend time with your family. We have several ways we can help you. Introduce palliative or comfort care and/or hospice One of the best ways to meet your needs would be a comfort care plan. One of the best ways to give you help is a program called hospice. The hospice program can provide extra support and the hospice has a lot of experience in caring for seriously ill people. Acknowledge response You seem surprised to learn how sick you are. I can see it is not easy for you to talk about end-of-life care. Empathize I can imagine how hard this is for all of you to talk about you care about each other so much. Explore concerns Tell me what is upsetting you the most. Explain comfort care or hospice goals Comfort or hospice care does not help people die sooner it helps people die naturally. Comfort and hospice care helps people live as well as they can for as long as they can. Reassure The goal of comfort and hospice care is to improve your quality of life as much as possible for whatever time you have left. Comfort and hospice care can help you and your family make the most of the time you have left. Reinforce commitment to care Why don t you think this over? I think comfort or hospice care is the best choice for you right now, but the decision is yours. You know we will continue to care for you whatever you decide Florida Atlantic University, all rights reserved.

11 Advance Care Planning Communication Guide Part 4: The Resident or Family Who Want Everything Done Ver sion 4.0 Tool Resident/Family Concern How They Say It How You Can Respond Abandonment Don t give up on me. What worries you the most? Fear Keep trying for me. What are you most afraid of? Anxiety I don t want to leave my family. What does your doctor say about your condition? Depression I m scared of dying. What is the most frightening to you? Incomplete Understanding I do not really understand how sick I am. What are your most important goals? Wanting reassurance that best medical care has been given Do everything you think is worthwhile. What is your understanding of your condition? Wanting reassurance that all possible life-prolonging treatment is given Don t leave any stone unturned. I really want every possible treatment that has a chance of helping me live longer. I will go through anything, regardless of how hard it is. What have others told you about what is going on with your illness? What have they said the impact of these treatments would be? Tell me more of what you mean by everything? Vitalism I value every moment in life, regardless of the pain and suffering (which has important meaning for me). Does your religion (faith) provide any guidance in these matters? Faith in God s Will I will leave my fate in God s hands; I am hoping for a miracle; only He can decide when it is time to stop. How might we know when God thinks it is your time? Differing perceptions I cannot bear the thought of leaving my children (wife/husband). How is your family handling this? Children or dependents My family is only after my money. I don t want to bother my children with all of this. Have you made plans for your children (other dependents )? Have you discussed who will make decisions for you if you cannot? Have you completed a will? 2014 Florida Atlantic University, all rights reserved.

12 Advance Care Planning Communication Guide Sources of Information Ver sion 4.0 Tool References This guide contains information adapted from the following sources: 1. The Palliative Response Sharing the Bad News, the Birmingham/Atlanta VA Geriatric Research, Education and Clinical Center 2. Tulsky, JA. Beyond Advance Directives Importance of Communication Skills at the End of Life. JAMA 2005; 294: Casarett, DJ and Quill, TE. I m Not Ready for Hospice : Strategies for Timely and Effective Hospice Discussions. Ann Intern Med 2007; 146: Quill, TE, Arnold, R, and Back, AL. Discussing Treatment Preferences with Patients Who Want Everything. Ann Intern Med 2009; 151: Additional Resources for Staff and Families (available free on the internet) 1. American Association for Retired Persons 2. The Coalition for Compassionate Care 3. The Conversation Project 4. Closure.org 5. Caring Connections of the National Hospice and Palliative Care Organization 2014 Florida Atlantic University, all rights reserved.

13 Comfort Care Interventions Examples Ver sion 4.0 Tool Some nursing home residents and/or their families are reluctant to enroll in hospice but would like a comfort care plan. The examples of comfort care orders below may be helpful for these residents, who will not have hospice order sets. Order Type Examples and Helpful Tips Diet 1. Order a diet (it may improve the desire to taste food ) 2. Full rather than clear liquid if liquid diet necessary 3. May have food brought in by family 4. Allow resident to sit up for meals Activity Vital Signs IV Orders Orders for Dyspnea and Shortness of Breath Hygiene 1. Allow resident to sit in chair and use a bedside commode if capable and desired 2. Other activities as tolerated 3. Allow family to stay in room 1. Minimum frequency allowed by policy a. Frequent monitoring and numbers can alarm resident and family b. Limit MD/NP/PA notification parameters 1. If IV fluids are needed, use a time limited trial, (e.g. 1000cc of D5 ½ Normal Saline over 6 hrs) a. Starting IV is often difficult and painful and usually of limited benefit 2. Subcutaneous injections of small volumes of medicines using a small butterfly needle under the skin of the thigh or abdomen may avoid the need for IV therapy 1. Oxygen 2-4 L by nasal cannula; avoid mask if possible 2. Avoid monitoring oxygen saturations 3. Blow air on face with a bedside fan or open window 4. Nebulizers may be helpful 5. Consider steroids if wheezing present 6. Use opioids for persistent dyspnea 7. Use antibiotics if a bacterial infection is exacerbating dyspnea and treatment may improve symptoms 1. Avoid bladder (Foley) catheter if possible a. May be helpful in selected residents who are immobile and have pain with toileting or movement 2. Check regularly for stool impaction a. Suppositories may be helpful 3. Monitor for oral thrush 4. Petroleum jelly to lips may be helpful for dry mouth 5. Allow family to cleanse mouth with sponge sticks 2014 Florida Atlantic University, all rights reserved. This document is available for clinical use, but may not be resold or incorporated in software without permission of Florida Atlantic University.

14 Comfort Care Interventions Examples (cont d) Ver sion 4.0 Tool Order Type Pain and Dyspnea Anorexia, Asthenia, Fatigue, Depression, Pain, Dyspnea Nausea and Delirium Anxiety and Seizures Sleep Skin, Pruritus, Wounds Death Rattle Comfort, Counseling, Safety Examples and Helpful Tips 1. Opioids usually most effective 2. Use small, frequent doses as needed for opioid-naïve residents 3. Consider stopping sustained preparations and switching to immediate release Morphine concentrate 20 mg/ml 4. Start with equivalent dose as previous regimen at least 5 mg PO every 2 hrs 5. Offer routinely, and let the resident refuse 6. Use short-acting benzodiazepine if anxiety is present 1. Corticosteroids can have beneficial effects a. Use Dexamethasone 4-8 mg PO or subcutaneous at breakfast and lunch (avoids the mineralocorticoid effects of Prednisone) 2. Employ sleep hygiene measures to facilitate optimal nighttime sleep 1. Review underlying cause(s) of delirium and nausea, and eliminate if possible 2. Haloperidol mg PO or mg subcutaneous every 2 hrs for 3 doses or until symptoms relieved, then every 4 hours PRN 1. Lorazepam for anxiety mg PO or subcutaneous every 6-8 hrs a. Must be given IV or subcutaneous for seizures 1. Trazodone mg PO or Zolpidem 5-10 mg PO qhs 1. Keep skin moist; use moisturizing soap or lotions 2. Hydrocortisone creams may be helpful 3. Benadryl mg PO ever 4 hours for pruritus 4. Lidocaine 2% gel PRN to painful wounds 1. Keep back of throat dry by turning head to the side 2. Stop IV fluids or tube feedings 3. Use a Scopolamine patch; Atropine drops 2-3 in the mouth every 4 hrs until patch is effective a. Use glycopyrrolate, 1-2 mg PO or mg IV or subcutaneous every 4 hrs; or mg/day continuous infusion is an alternative 4. Avoid deep suctioning 5. Allow family to cleanse mouth with sponge sticks 1. Sit with resident and talk to avoid isolation 2. Reposition and massage regularly 3. Avoid sensory overload (e.g. loud TV ); use soft music 4. Avoid use of restraints, bedrails, and alarms 5. Religious counseling should be considered if acceptable 2014 Florida Atlantic University, all rights reserved.

15 Deciding About Going to the Hospital Ver sion 4.0 Tool Older nursing home residents commonly develop new or worsening symptoms. When this occurs, a decision may be needed about whether to continue care in the nursing home or go to a hospital. Because there are risks as well as benefits of care in a hospital, it is important to make the right decision. The decision depends on a number of factors, and how the nursing home resident and her or his relatives view the benefits and risks of care in the hospital as opposed to the nursing home. Research has shown that some hospitalizations may be unnecessary. Whether hospitalization can be prevented depends on the resident s condition, the ability of the staff to provide the care necessary in the nursing home, and the preferences of the resident and her or his family. Benefits of Hospital Care There are many symptoms and conditions that usually require treatment in the hospital for example, if vital signs are very abnormal (temperature, heart rate, or breathing rate), or if symptoms are severe and can t be controlled (such as pain or vomiting). Hospital care offers benefits in these situations, including: Ready availability of sophisticated lab tests, X-rays, and scans Access to doctors and specialists who are in the hospital every day Availability of surgery and other procedures if needed Intensive care units for people who are critically ill Risks of Hospital Care Nursing home residents are prone to many complications of care in a hospital. These complications may occur even in the best hospitals, because older age, chronic medical problems, and the condition that caused the transfer all combine with the hospital environment to put nursing home residents at high risk for complications. These complications include: New or worsening confusion More time spent in bed, which can increase the risk of blood clots, pressure ulcers, muscle weakness, loss of function, and other complications Less sleep and rest due to tests, monitoring, and noise Increased risk for: - Falls with injuries, such as cuts, bruises, and broken bones - New infections - Depression due to limited opportunities to socialize with friends and family, as well as being in an unfamiliar environment (continued) 2014 Florida Atlantic University, all rights reserved. This document is available for clinical use, but may not be resold or incorporated in software without permission of Florida Atlantic University.

16 Deciding About Going to the Hospital (cont d) Ver sion 4.0 Tool Benefits of Staying in the Nursing Home There are benefits of staying in the nursing home when a new symptom or condition occurs assuming it is safe to treat the condition in the nursing home and staying in the nursing home is consistent with the preferences of the resident and her or his family. Treatment in the nursing home allows residents to: Have continuity of care this means that residents continue to receive care from staff members who know them, and who are able to respond to their individual preferences and needs Remain in a familiar environment with their personal possessions, and keep their individual routines as much as possible Avoid what is often an uncomfortable trip to the hospital and long delays waiting in the emergency room Avoid potential problems due to miscommunication between the hospital and the nursing home Avoid other hospital-related complications What Can Residents and Their Families Do? There are several things that residents and their relatives can do to make sure the right decisions about hospital care are made in their best interest, including: Participating in care planning (deciding on treatment preferences) with the nursing home staff and their primary care provider (doctor, nurse practitioner, or physician s assistant) Discussing the risks and benefits of a hospital transfer vs. treatment in the nursing home when a new symptom or condition is recognized Completing an Advance Directive document, such as a Durable Power of Attorney for Health Care that expresses preferences for care in emergencies and at the end of life Understanding the resources available in the nursing home to treat the new symptom or condition ( for example, oxygen, lab tests, intravenous (IV) fluids and medications ) Understanding the financial and other issues, such as bed-hold policies, of treatment in the hospital vs. in the nursing home 2014 Florida Atlantic University, all rights reserved.

17 Education on CPR for Residents and Families Ver sion 4.0 Tool The Problem Many health problems are so serious that they cause your heart to stop beating. This is called cardiac arrest. When this happens, you also stop breathing. The heart pumps blood to all organs in your body to give them oxygen. When your heart stops beating, your body and brain do not get enough oxygen for you to live. Treatment There is only one treatment when your heart stops beating. That treatment is cardiopulmonary resuscitation or CPR. CPR is done to try to restart the heartbeat and breathing. It is the only treatment that could save your life when your heart stops beating. CPR involves rapidly pushing on your chest, and placement of a tube through the mouth into the lungs to directly help you breathe. Sometimes electric shocks are given using a device called a defibrillator. Once started, CPR is continued until your heart restarts or it is clear beyond a doubt that your heart cannot be restarted. CPR can be started in the nursing home, but as soon as possible, you will be transferred to the hospital, often an intensive care unit, for additional treatment and monitoring. Your Choice CPR is a choice it is not a treatment that everyone must have. Some people believe that when their time comes or their heart or breathing stops, nothing more should be done to keep them alive. Other people want everything done to keep them alive. Neither of these choices is right or wrong. It is your choice. You should understand, however, that if you choose not to have CPR, your choice will not affect any other aspect of your care. All of your other treatments and care will continue. The only thing that will change is that if you are found without a pulse or heartbeat (in cardiac arrest) CPR will not be done. (continued on reverse) 2014 Florida Atlantic University, all rights reserved. This document is available for clinical use, but may not be resold or incorporated in software without permission of Florida Atlantic University.

18 Education on CPR for Residents and Families (cont d) Ver sion 4.0 Tool Making the Decision: CPR or DNR Many people make a decision in advance about whether or not they want CPR. You can choose between having CPR and asking for a Do Not Resuscitate (DNR) order. If you choose the DNR order, CPR will not be done if your heart stops beating. You are unlikely to be able to make this decision for yourself at the time your heart stops beating. Making the decision in advance will help make sure that your wishes are carried out. The decision whether or not to have CPR can be a difficult one. You may want to discuss it with your family, doctor, nurse, social worker, or a religious leader. Understanding the benefits and risks of CPR is important when you make your decision. The chart below explains the benefits and risks of CPR. Benefits of CPR If your heart stops beating, CPR is the only treatment that could save your life. However, you should also know that the rate of surviving CPR is low. On average less than 1 in 10 people who receive CPR outside of a hospital survive. The chances of surviving CPR are even lower in people of advanced age, and in people with serious medical problems such as advanced forms of cancer and diseases of the heart, kidneys, and liver. Risks of CPR Although in some cases CPR can save your life, CPR itself can cause bodily harm. For example: Many people, especially older people with thin bones, suffer broken ribs as a result of CPR. There is a small chance that if you survive CPR, you can have severe brain damage or be in a coma for some time or even the rest of your life Help in Making Your Decision There are many resources available to you in making this decision. Organizations such as the American Association for Retired Persons, the Coalition for Compassionate Care, the Conversation Project, Closure, and Caring Connections of the National Hospice and Palliative Care Organization, as well as many others have information available in print and on their websites that may be helpful to you. In addition, most states have standard forms for documenting your decisions in advance ( Advance Directives ), and many are recommending completing an order form in advance, such as Physicians Orders for Life Sustaining Treatment ( POLST ) or other similar forms Florida Atlantic University, all rights reserved.

19 Identifying Residents who may be Appropriate for Hospice or Palliative/Comfort Care Orders Ver sion 4.0 Tool I. Residents with Selected Diagnoses who may be Appropriate for Hospice Congestive Heart Failure Symptoms of CHF at rest (New York Heart Association class IV ) Serum sodium level < 134 mmol/l or creatinine level > 2.0 mg/dl due to poor cardiac output Intensive care unit admission for exacerbation Chronic Obstructive Pulmonary Disease Cor pulmonale (right-sided heart failure associated with COPD) Intensive care unit admission for exacerbation New dependence in two activities of daily living (ADLs) due to COPD symptoms Chronic hypercapnia ( PaCO2 > 50 mm Hg ) Dementia Dependence in all ADLs, language limited to just a few words, and inability to ambulate Acute hospitalization (especially for pneumonia or hip fracture) Difficulty swallowing with recurrent aspiration Has feeding tube due to dementia or swallowing difficulty related to dementia Cancer Poor physical performance status as a result of cancer (dependence in multiple ADLs) Multiple tumor sites Metastatic cancer involving liver or brain Bowel obstruction due to cancer Pericardial effusion due to cancer II. Residents at High Risk of Actively Dying who Should be Considered for Palliative or Comfort Care Orders (if not already on Hospice) Frequent Emergency Room visits and/or hospitalizations over the last 6 months Sudden, major decline in functional status with no identified reversible causes Primary diagnosis of metastatic cancer with chronic pain and/or poor ADL function, not on chemotherapy Semi-comatose or comatose state with no identified reversible causes Inability or difficulty taking oral medicines Minimal oral intake (or receiving continuous or intermittent IV hydration) Mottling of extremities related to poor oral intake or volume depletion 2014 Florida Atlantic University, all rights reserved. This document is available for clinical use, but may not be resold or incorporated in software without permission of Florida Atlantic University.

20 Advance Care Planning Tracking Form Ver sion 4.0 Tool Resident Name Residents and/or their responsible health care decision makers should be provided the opportunity to discuss advance care planning with appropriate staff members and medical providers within the first few days of admission to the facility, at times of change in condition, and periodically for routine updating of care plans. The purpose of this tool is to document these discussions. (Several other INTERACT Advanced Care Planning Tools may be helpful in ACP discussion) This documentation is to Create a new Advance Care Plan Review existing Advance Care Plan Reason for this discussion/review Admission Readmission Change in condition alert Resident or Family Request Other This discussion was held with Resident Resident s surrogate Name Was an Advance Care Plan created or change made, as a result of this discussion? No Resident declined conversation Surrogate declined conversation Yes Resident/surrogate not available at this time Describe the Key Aspects of the discussion Advance Directive Orders in Place** (Any change in Advance Directives needs an order signed by the physician per your state requirements) Check all that apply Full Code Is the resident on Comfort Care/Palliative Care Plan Hospice DNR DNI DNH No Artificial Feeding POLST/MOLST/POST Other Care Limiting Orders Staff or healthcare provide leading discussion: Name Title Signature Date of discussion / / 2014 Florida Atlantic University, all rights reserved. This document is available for clinical use, but may not be resold or incorporated in software without permission of Florida Atlantic University.

21 Determining the Appropriate Decision Maker The patient with decision-making capacity is the appropriate decision maker unless the patient has delegated that authority to another. For patients who have lost decision-making capacity, the following hierarchy should prevail: Legally Authorized Decision Makers 1. Has the patient appointed a legal surrogate by informing the primary physician or supervising healthcare provider orally or in writing? If Yes, the physician should document the designation in the medical record. Note: the appointment lasts only for the length of stay in the medical facility within which the appointment was made or for 60 days, whichever is shorter. The authority of a surrogate appointed in this manner supersedes that of an agent appointed by an Advance Health Care Directive during that period. 2. Has the patient named an agent through an Advance Health Care Directive, Power of Attorney for Health Care, or Durable Power of Attorney for Health Care? If Yes, obtain and place a copy of the Advance Directive in the chart. The physician should document it in the medical record. 3. Does the patient have a court appointed guardian or conservator with medical decisionmaking authority? If Yes, the physician should place a copy in the chart and document it in the medical record. Note: not all guardians or conservators have medical decision-making authority check with the county Public Guardian if there is any question. If No to all of the above, the physician should document that there is no legal surrogate and proceed below. Informally Accepted Decision Makers There is no legally mandated hierarchy of decision makers in this type of situation. The Patient Self-Determination Act refers to the closest available relative or friend. 1. Have attempts been made to identify and involve family members, significant others and friends? 2. Is there a close family member or friend present and willing to serve as a surrogate decision maker? Does this person have a close, caring relationship with the patient? Is this person aware of the patient s values and beliefs? Is this person willing and able to make the needed decisions? 3. Is there agreement among those contacted that this person should act as surrogate? If Yes, document in the medical record and inform the patient. If there is more than one person meeting the above criteria, proceed to the following:

22 4. Is there consensus among these individuals as to the proper decision or decision maker? If Yes, then document in chart and inform the patient. If No, then proceed below. o Attempts should be made to reach consensus or determine the most appropriate decision maker based on which candidate is most familiar with the patient s wishes and values. o These attempts may include interviews and/or family meetings involving the primary physician and social services, consultation with the hospital ethics committees, etc. o If an impasse persists after the above efforts and an urgent treatment decision is needed, a Petition for Court Authorization to Make a Health Care Decision can be filed, with a decision within hours. o In all cases, the physician will attempt to inform the patient lacking decision-making capacity who will serve as healthcare agent or surrogate and the decisions authorized by that person. Decision Making Standards for All Surrogates (from the California Health Care Decisions Law, Probate Sec.) Both legally authorized and informal decision makers are to use the following decision-making standard: Healthcare decisions must be in accord with the patient s individual healthcare instructions, if any, and other wishes to the extent known to the agent, surrogate or conservator. If the patient s wishes are not known, decisions are to be made in accord with the agent, surrogate, or conservator s determination of the patient s best interest in light of the personal values and beliefs of the patient to the extent they are known. In the rare situation where a patient has a conservator, has not made an advance directive and is not terminally ill, permanently unconscious or in a permanent vegetative state, decision to forgo life-sustaining treatments must be supported with clear and convincing evidence of the patient s wishes or personal values, or best interests concerning such treatment. Prepared by Coalition for Compassionate Care of California Revised October 2013 CoalitionCCC.org info@coalitionccc.org (916)

23 Guide for Assessing Medical Decision Making Capacity The primary physician or supervising healthcare provider will determine a patient s decision making capacity unless the patient has directed in a written advance directive that another make that determination. Capacity may vary and the patient may have capacity for some decisions and not for others. Patients should be allowed to make as many healthcare decisions as possible. The following are the basic components of medical decision making capacity: Does the patient understand the basic medical situation? Does the patient understand the nature of the decision being asked of him or her? Understanding includes the following: o o Implications the benefits and risks, what the treatment entails Alternatives and their implications, including the implication of no decision Can the patient communicate a decision? It should be documented in the chart if and when the primary physician or supervising healthcare provider has determined that the patient lacks capacity for a given decision or decisions. It should also be documented in the chart if and when the patient regains capacity for a given decision or decisions. Some further issues to consider when confronting questions of medical decision making capacity include: Have all barriers to communication been removed? (i.e., sedating medications, time, privacy of setting, appropriate interpreting or translation services) Does the patient have all of the information necessary in order to make a reasonably informed decision? Does the patient understand the information? o o Implications of the illness and/or what treatment entails including risks and benefits Alternatives to treatment, including no treatment, and the risks and benefits Has the patient formed an opinion regarding what should be done? What is the basis for the opinion? Does it make sense within the context of the patient s history and value system? Is the decision stable over a reasonable period of time? Are there social issues that may be unduly influencing the patient s true views and wishes (threats by family members, concerns about financial abuse, pending divorce, etc.)? Can these be controlled? Consider consultation, such as a family meeting, social services, or ethics committee, if uncertainties exist regarding any of the above assessments. Prepared by Coalition for Compassionate Care of California Revised October 2013 CoalitionCCC.org info@coalitionccc.org (916)

24 Your Conversation Starter Kit When it comes to end-of-life care, talking matters. CREATED BY THE CONVERSATION PROJECT AND THE INSTITUTE FOR HEALTHCARE IMPROVEMENT

25 The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. We know that no guide and no single conversation can cover all the decisions that you and your family may face. What a conversation can do is provide a shared understanding of what matters most to you and your loved ones. This can make it easier to make decisions when the time comes. NAME DATE HOW TO USE THE STARTER KIT This Starter Kit doesn t answer every question, but it will help you get your thoughts together, and then have the conversation with your loved ones. You can use it whether you are getting ready to tell someone else what you want, or you want to help someone else get ready to share their wishes. TABLE OF CONTENTS Why talking matters...2 Step 1: Get Ready...3 Step 2: Get Set...4 Step 3: Go...7 Step 4: Keep Going...10 Take your time. This kit is not meant to be completed in one sitting. It s meant to be completed as you need it, throughout many conversations. 1 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Institute for Healthcare Improvement

26 Why talking matters Sharing your wishes for end-of-life care can bring you closer to the people you love. It s critically important. And you can do it. Consider the facts: 90% of people say that talking with their loved ones about end-of-life care is important. 27% have actually done so. Source: The Conversation Project National Survey (2013) 60% of people say that making sure their family is not burdened by tough decisions is extremely important. 56% have not communicated their end-of life wishes. Source: Survey of Californians by the California HealthCare Foundation (2012) 80% of people say that if seriously ill, they would want to talk to their doctor about wishes for medical treatment toward the end of their life. 7% report having had this conversation with their doctor. Source: Survey of Californians by the California HealthCare Foundation (2012) 82% of people say it s important to put their wishes in writing. 23% have actually done it. Source: Survey of Californians by the California HealthCare Foundation (2012) One conversation can make all the difference. 2 Institute for Healthcare Improvement

27 Step 1 Get Ready You will have many questions as you get ready for the conversation. Here are two to help you get started:? What do you need to think about or do before you feel ready to have the conversation?? Do you have any particular concerns that you want to be sure to talk about? (For example, making sure finances are in order; or making sure a particular family member is taken care of.) REMEMBER: You don t need to have the conversation just yet. It s okay to just start thinking about it. You can start out by writing a letter to yourself, a loved one, or a friend. You might consider having a practice conversation with a friend. Having the conversation may reveal that you and your loved ones disagree. That s okay. It s important to simply know this, and to continue talking about it now not during a medical crisis. Having the conversation isn t just a one-time thing. It s the first in a series of conversations over time. 3 Institute for Healthcare Improvement

28 Step 2 Get Set What s most important to you as you think about how you want to live at the end of your life? What do you value most? Thinking about this will help you get ready to have the conversation.? Now finish this sentence: What matters to me at the end of life is (For example, being able to recognize my children; being in the hospital with excellent nursing care; being able to say goodbye to the ones I love.) Sharing your what matters to me statement with your loved ones could be a big help down the road. It could help them communicate to your doctor what abilities are most important to you what s worth pursuing treatment for, and what isn t. WHERE I STAND SCALES Use the scales below to figure out how you want your end-of-life care to be. Select the number that best represents your feelings on the given scenario. As a patient, I d like to know Only the basics about my condition and my treatment All the details about my condition and my treatment As doctors treat me, I would like My doctors to do what they think is best To have a say in every decision Institute for Healthcare Improvement 4

29 If I had a terminal illness, I would prefer to Not know how quickly it is progressing Know my doctors best estimation for how long I have to live? Look at your answers. What kind of role do you want to have in the decision-making process? How long do you want to receive medical care? Indefinitely, no matter how uncomfortable treatments are Quality of life is more important to me than quantity What are your concerns about treatment? I m worried that I won t get enough care I m worried that I ll get overly aggressive care What are your preferences about where you want to be? I wouldn t mind spending my last days in a health care facility? Look at your answers. What do you notice about the kind of care you want to receive? I want to spend my last days at home 5 Institute for Healthcare Improvement

30 How involved do you want your loved ones to be? I want my loved ones to do exactly what I ve said, even if it makes them a little uncomfortable I want my loved ones to do what brings them peace, even if it goes against what I ve said When it comes to your privacy When the time comes, I want to be alone I want to be surrounded by my loved ones When it comes to sharing information I don t want my loved ones to know everything about my health I am comfortable with those close to me knowing everything about my health? Look at your answers. What role do you want your loved ones to play? Do you think that your loved ones know what you want, or do you think they have no idea?? What do you feel are the three most important things that you want your friends, family, and/or doctors to understand about your wishes and preferences for end-of-life care? Institute for Healthcare Improvement 6

31 Step 3 Go When you re ready to have the conversation, think about the basics. MARK ALL THAT APPLY:? WHO do you want to talk to?? Mom Dad Child/Children Partner/Spouse Sister/Brother WHEN would be a good time to talk? The next holiday Before my child goes to college Before my next trip Before I get sick again Faith leader (Minister, Priest, Rabbi, Imam, etc.) Friend Doctor Caregiver Other: Before the baby arrives The next time I visit my parents/ adult children At the next family gathering Other:? WHERE would you feel comfortable talking? At the kitchen table Sitting in a park At a favorite restaurant At my place of worship In the car Other: On a walk? WHAT do you want to be sure to say? If you wrote down your three most important things at the end of Step 2, you can use those here. 7 Institute for Healthcare Improvement

32 How to start Here are some ways you could break the ice: I need your help with something. Remember how someone in the family died was it a good death or a hard death? How will yours be different? I was thinking about what happened to, and it made me realize Even though I m okay right now, I m worried that, and I want to be prepared. I need to think about the future. Will you help me? I just answered some questions about how I want the end of my life to be. I want you to see my answers. And I m wondering what your answers would be. What to talk about: When you think about the last phase of your life, what s most important to you? How would you like this phase to be? Do you have any particular concerns about your health? About the last phase of your life? What affairs do you need to get in order, or talk to your loved ones about? (Personal finances, property, relationships) Who do you want (or not want) to be involved in your care? Who would you like to make decisions on your behalf if you re not able to? (This person is your health care proxy.) Would you prefer to be actively involved in decisions about your care? Or would you rather have your doctors do what they think is best? Are there any disagreements or family tensions that you re concerned about? Are there important milestones you d like to be there for, if possible? (The birth of your grandchild, your 80th birthday.) Institute for Healthcare Improvement 8

33 Where do you want (or not want) to receive care? (Home, nursing facility, hospital) Are there kinds of treatment you would want (or not want)? (Resuscitation if your heart stops, breathing machine, feeding tube) When would it be okay to shift from a focus on curative care to a focus on comfort care alone? This list doesn t cover everything you may need to think about, but it s a good place to start. Talk to your doctor or nurse if you d like them to suggest more questions to talk about. REMEMBER: Be patient. Some people may need a little more time to think. You don t have to steer the conversation; just let it happen. Don t judge. A good death means different things to different people. Every attempt at the conversation is valuable. This is the first of many conversations you don t have to cover everyone or everything right now. Nothing is set in stone. You and your loved ones can always change your minds as circumstances change. Now, just go for it! Each conversation will empower you and your loved ones. You are getting ready to help each other live and die in a way that you choose. 9 Institute for Healthcare Improvement

34 Step 4 Keep Going Congratulations! Now that you have had the conversation, here are some legal and medical documents you should know about. Use them to record your wishes so they can be honored when the time comes. Advance Care Planning (ACP) The process of planning for your future care exactly what you have been working on here. Advance Directive (AD) A document that describes your wishes. Health Care Proxy (HCP) Identifies your health care agent (often called a proxy ), the person you trust to act on your behalf if you are unable to make health care decisions or communicate your wishes. In some states, this is called the Durable Power of Attorney for Health Care. This is probably the most important document. Make sure you have many conversations with your proxy. You can find more information about these documents from the link in the Keep Going section of the website Starter Kit at: Remember, this was the first of many conversations. You can use the questions on the following page to collect your thoughts about how your first talk went, and then look back to them when you prepare for future conversations. Living Will Specifies which medical treatments you want or don t want at the end of your life, or if you are no longer able to make decisions on your own (e.g., in a coma). Institute for Healthcare Improvement 10

35 ? Is there something you need to clarify that you feel was misunderstood or misinterpreted?? Who do you want to talk to next time? Are there people who should hear things at the same time (like siblings who tend to disagree)?? How did this conversation make you feel? What do you want to remember? What do you want your loved ones to remember?? What do you want to make sure to ask or talk about next time? We hope you will share this Starter Kit with others. You have helped us get one conversation closer to our goal: that everyone s end-of-life wishes are expressed and respected. Please send us your feedback or request additional information at conversationproject@ihi.org.

36 How To Talk To Your Doctor (or any member of your health care team) The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. Talking with your loved ones openly and honestly, before a medical crisis happens, gives everyone a shared understanding about what matters most to you at the end of life. (See the Conversation Starter Kit for help taking that first step. It s available for free at theconversationproject.org.) After you ve had the conversation with your loved ones, the next step is talking to your doctor or nurse about your wishes. Again, don t wait for a medical crisis; talking with your doctor or nurse now makes it easier to make medical decisions when the time comes. Created by The Conversation Project and the Institute for Healthcare Improvement

37 This document does not seek to provide legal advice The Conversation Project. All rights reserved. You can use this guide as a workbook to make notes of what to tell the health care team whether you re getting ready to discuss your own wishes, or you re helping someone else get ready to discuss theirs. Step 1: Get Ready... 1 Step 2: Get Set... 2 Step 3: Go... 5 Step 4: Keep Going Institute for Healthcare Improvement

38 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Step 1: Get Ready Okay so you ve had the conversation with your loved ones. Congratulations! You ve already taken the most important step. (Note: If you haven t yet had the conversation with your loved ones, see the Conversation Starter Kit for help taking that first step. It s available for free at theconversationproject.org.) The next step is to have a conversation with your health care team to make sure that they know your preferences regarding end-of-life care. Remember: You re the expert about what matters most to you. Your health care team s role is to listen carefully to your wishes, and then help you make the most appropriate decisions about your care. That means explaining the available treatment options and helping you decide which ones are right for you especially if you or your loved one experience a dramatic change in health. 1 Institute for Healthcare Improvement

39 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Step 2: Get Set When you re ready to talk to your doctor (or help someone else talk to their doctor), start by thinking about the basics. Mark all that apply: Who do you want to talk to? Your primary care doctor Your nurse, nurse practitioner, or physician s assistant Your specialist provider, if you have a chronic condition (heart doctor, lung doctor, etc.) Your therapist, social worker, psychologist, or psychiatrist Your case manager Your admitting team, if you are hospitalized The staff physician or nurse at your nursing home or assisted living facility Other Choose someone you re comfortable talking to if possible, someone who knows you and your health status. When would be a good time to talk? At your next annual physical At your next routine follow-up visit During an urgent visit After a visit to the emergency room When you re admitted to the hospital If you have a new diagnosis (for example, cancer, chronic heart or lung disease) Other 2 Institute for Healthcare Improvement

40 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Even if you re in good health, it s still important to make sure your health care team knows your wishes, since anyone s health status can change suddenly. It s particularly important to have this conversation if you or a loved one has a chronic illness. You ll probably have several conversations with your doctor over time, and each one will be a little different depending on the context. But every conversation will help your health care team understand what matters to you. Most importantly don t wait until there s a crisis. And don t wait for your doctor to bring it up. It always seems too early until it s too late. How else can you prepare yourself for the conversation with your doctor? Learn about some common medical terms that might come up. Your job is not to come up with a list of treatment options; that s your doctor s job. Your role is to help your doctor understand what matters most to you. Then your doctor can discuss treatment options in the context of your current health status and your wishes. Then you can make the decision that s right for you. Here are a few examples of treatment options that your doctor might mention: CPR (Cardiopulmonary resuscitation): If your heart stops, attempts are made to restart your heart with chest compressions or electricity. Intubation/mechanical ventilation: When you can t breathe on your own, a breathing tube is placed in your throat and into your lungs, connecting you to a machine that can breathe for you. Can be used short-term or long-term, depending on your needs and preferences. Artificial nutrition and hydration: When you can t eat or drink on your own, fluid and nutrients are delivered in an IV or through a tube in your nose or stomach. (This is sometimes called a PEG tube an abbreviation for percutaneous endoscopic gastrostomy. ) Can be used short-term or long-term, depending on your needs and preferences. Comfort care: When curative care is no longer likely to help, medication or other noninvasive options are used solely to keep you comfortable. 3 Institute for Healthcare Improvement

41 This document does not seek to provide legal advice The Conversation Project. All rights reserved. A time-limited trial of aggressive care: A short-term trial (usually days) of all possible life-saving medical care, with the understanding that if it is not successful and it appears that your chances of survival are low, or that your quality of life will be inconsistent with your preferences, you would discontinue aggressive care and focus solely on comfort. 4 Institute for Healthcare Improvement

42 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Step 3: Go Sometimes the hardest part is knowing how to begin. When you re ready to talk to your doctor, here are some ways you could break the ice. Call your doctor s office and leave a message before your visit. It helps your doctor and health care team if they know in advance that you want to take time during your visit to discuss your end-of-life wishes. That way, they can make sure to set aside time for this important conversation. Could you please tell Dr. Jones that I want to talk about my end-of-life wishes during my visit on Friday? Write your doctor a letter if it feels easier to start that way. Prepare your opening line. When you meet with your doctor, tell it like it is. I want to have a conversation about my wishes for end-of-life care. Bring in your Starter Kit and share your three most important things I d like people to know about my end-of-life wishes or your answers to the Where I Stand scales (both found in Step 2: Get Set). Have you heard about The Conversation Project? It s a campaign to help people talk about their end-of-life wishes. Here s what I ve thought about so far. Share your reflections about deaths that you or your loved ones have witnessed. My friend s sister recently died in the hospital after weeks of aggressive care. I don t want that. I think I might prefer to die at home. I think I d feel more comfortable if I died in the hospital. They take such good care of me. Tell your doctor about important milestones you hope to make. My granddaughter is getting married in a year and I d really like to be there can you help me understand what I might need to do to make it to the wedding? 5 Institute for Healthcare Improvement

43 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Bring your health care proxy (the person you ve chosen to make medical decisions for you if you aren t able to) and/or a friend or family member to the visit. Ask them to take notes. I brought my sister with me today, because I d like to talk to you about my endof-life wishes and she s my health care proxy. Here are some questions you can ask to help you understand your or your loved one s medical problems. (And in fact, it s pretty hard to make decisions about end-of-life care without a good understanding of the answers to these questions.) Can you tell me what I can expect from this illness? What is my life likely to look like 6 months from now, 1 year from now, and 5 years from now? What can I expect about my ability to function independently? What are some possible big changes in my health that my family and I should be prepared for? What can I expect to improve (or not improve) if I choose this course of treatment, or another course of treatment? What can I expect if I decide to do nothing? Make sure to ask your doctor or health care team to document your discussion, and your wishes, in your medical record. Things to remember and other things it s okay to say: Ask a lot of questions. I don t understand can you explain it in a different way? You don t have to decide about anything right away. I d like to talk this over with a friend can we have another conversation in a couple of weeks? Would you write this down for me? Ask for numbers and statistics if it helps you, but also realize that in many cases, there is simply just a lot of uncertainty. 6 Institute for Healthcare Improvement

44 This document does not seek to provide legal advice The Conversation Project. All rights reserved. You may want to have a private conversation with your doctor. It can be hard to do this, especially if your loved one always accompanies you. Leave your doctor a message prior to the appointment. They are accustomed to facilitating this in a way that will not make your loved one feel uncomfortable. Could you please tell Dr. Jones that, when I come in for my visit on Friday, I d like a chance to talk to him alone about my end-of-life wishes? 7 Institute for Healthcare Improvement

45 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Step 4: Keep Going It s important to have follow-up conversations to revisit the issues that come up in these conversations. Your preferences may change as time passes. Your health care team may ask you to consider treatment options that you d like some time to think about. And sometimes, these conversations don t go as planned. Here are some scenarios that may require you to have the conversation again with your health care team, or to revisit the conversation with your loved ones. My health care provider doesn t want to talk about it. It is your right to talk about this you can insist on it. ( Yes, I am doing well now, but things can change at any moment and I want us both to be prepared. ) If there isn t enough time, suggest scheduling another appointment specifically to focus on this conversation. If you continue to feel resistance, you may need to consider seeking another health care provider. My loved one has dementia and it s not possible to discuss what matters. Can you remember a conversation with your loved one about the death of someone close? Did she or he ever comment on the experience someone else had at the hospital? Use these observations to guide the conversation with the care team and the decisions that are made. I am a health care proxy for a loved one, and I disagree with his or her wishes. A health care proxy should act on a loved one s behalf using substituted judgment in other words, making the decision your loved one would make if he or she could. If you feel that you cannot carry out your loved one s wishes, then it s a good idea to say so. They might want to choose an alternate health care proxy. If you have never had a conversation with the person for whom you re a proxy, then you will need to do your best to act in your loved one s best interest, guided by their health care team. 8 Institute for Healthcare Improvement

46 This document does not seek to provide legal advice The Conversation Project. All rights reserved. I am a health care proxy for my parent, but my siblings disagree with my parent s expressed wishes. See the answer above. Your obligation as a health care proxy is to make decisions according to your loved one s wishes. There are teams of people in the medical community (often called ethics committees) that can help clarify these kinds of situations, but sometimes it just takes time for family members to come to terms with their loved one s expressed wishes. My doctor doesn t agree with my choices and has his/her own strong opinion. First, explore why. Maybe your doctor fears that aggressive therapy will buy you a little time, but little quality of life. Or maybe your doctor believes that a time-limited trial of aggressive therapy may mean that you can be back enjoying your life again. If it s still challenging to find common ground, you may need to seek a second opinion. Remember, you are the expert on your desired quality of life. I got two different opinions from two of my doctors. Get them in same room at the same time and talk! We do this with painters and contractors, and here the stakes are much higher. Sure, it can be logistically difficult but it is your right. If you re not comfortable bringing together two of your doctors who disagree, tell one of your doctors (or another member of your team) that you ve received two different opinions and you d like help understanding the difference. We invite you to talk back: Was your health care team Conversation Ready? Were they ready to listen? We invite you to share your experience talking to your doctor by visiting theconversationproject.org and clicking on Your Stories. We hope you will share this document with others. Every time people talk to their doctors (or any member of their care team) about their end-of-life wishes, it helps ensure that their wishes will be properly respected. 9 Institute for Healthcare Improvement

47 Pediatric Starter Kit: Having the Conversation with Your Seriously Ill Child The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. We developed the original Conversation Starter Kit as a useful tool to help people have conversations with their family members or other loved ones about their wishes regarding end-of-life care. We know these conversations can be difficult. Even though people say it s important to have the conversation, we all find lots of reasons to avoid actually doing it. After we posted the Conversation Starter Kit on our website a few years ago, parents contacted us about the need for an additional resource: a Starter Kit specifically designed to help parents of seriously ill children who want guidance about having the conversation with their children. We are not experts in this area, but we are parents; and it is with a lot of humility that we offer this new Starter Kit as a resource to help parents and loved ones begin a conversation with seriously ill children. Created by The Conversation Project and the Institute for Healthcare Improvement

48 This document does not seek to provide legal advice The Conversation Project. All rights reserved. In some ways, having the conversation with a seriously ill child is very different from having the conversation with an adult family member or loved one. It can be hard (or in some cases, not possible) for a child to articulate his or her wishes and preferences. And of course there s the inherent heartbreak of a seriously ill child. As one parent told us, When you re talking about a child, there s no such thing as a good death. Yet even though the circumstances are very different, the goal is the same: to understand your child s wishes to the fullest extent possible, and make sure that those wishes are respected. We hope that you find this Starter Kit useful in having conversations with your child, and we welcome your feedback about how we can make the Kit more useful. We are well aware that one size does not fit all and that the conversation will be very different depending on the age of the child (from babies through teenagers), the nature of the child s illness (from sudden crisis to chronic illness), and the setting (whether hospital or home). Please take what you find useful, start wherever you want, and revisit different sections of the Kit over time. We also invite you to share your stories about having the conversation with your child on the Conversation Project website at so that other parents can learn and benefit from your experience. Step 1: Get Ready...1 Step 2: Get Set...4 Step 3: Go Step 4: Keep Going Resources Thanks to Dianne Gray, Blyth Lord, Paula Skelley, and Kathy Perko for sharing their stories, experience, and wisdom. Their invaluable contributions are at the heart of this document. Copyright 2014 The Conversation Project All rights reserved. Individuals may photocopy these materials for educational, not-for-profit uses, provided that the contents are not altered or condensed in any way and that proper attribution is given to The Conversation Project, including its web address theconversationproject.org, as the source of content. These materials may not be reproduced for commercial, for-profit use in any form or by any means, or republished under any circumstances, without written permission of The Conversation Project. Institute for Healthcare Improvement

49 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Step 1: Get Ready Should I have the conversation with my child? If you re worried that having the conversation with your child might make a tough situation even worse, you re not alone. Most parents of seriously ill children start exactly where you are. You know your child better than anyone else. And more than anything, you want to protect your child. You might be wondering Will having the conversation upset my child? Will having the conversation frighten my child? Will having the conversation make a difficult situation even worse? Is it better for my child not to know how sick he or she is? Will talking about death and dying make it come true? It s okay to go there. We have learned from the stories of experienced pediatricians and palliative care providers across the country that children often sense that they are dying even if nobody is talking about it. We often hear that many children don t talk about this because they want to protect their parents! They don t want to upset you. So your child may need your permission to go there. Children are often more open to talking about dying than you might expect, but may bring it up in unexpected ways. Also, research has shown that parents who talk about death with their children do not regret it (but many of those who do not talk about it regret not having done so). Kreicbergs U, et al. N Engl J Med. Talking about death with children who have severe malignant disease. 2004; 351: Institute for Healthcare Improvement

50 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Here s the advice of an experienced pediatric nurse Kathy: Oftentimes parents don t want to have this conversation because it will upset their child, and the child doesn t want to bring anything up because they don t want to upset their parents. Somebody needs to bridge that gap. I ll say to the parent, Why not give it a try. And here is the advice of a mother whose child died at age two Blyth: When a parent asks, Should I have the conversation with my child?, they sort of already know the answer. This is the scariest thing the parent will have to do if they re fortunate enough to have a child that is able to have this conversation with them. (Unfortunately, some of these children can t communicate.) This is the scariest thing a parent will have to think about doing because they want to protect their child. So the question is how to help them, because they want to talk about it but they don t want to talk about it. So having the conversation with your child as hard, awkward, sad, and scary as it may be is really important, and can be helpful for everyone. Remember It is natural for parents to worry that having the conversation might upset their child. Children often sense that they re dying even if nobody is talking about it. Children often don t talk about it because they don t want to upset their parents. Talking about death will not hasten it. Even if your child can t communicate verbally, there are often other ways to communicate. Parents who talk to their children about death often cope better after their child dies. 2 Institute for Healthcare Improvement

51 This document does not seek to provide legal advice The Conversation Project. All rights reserved. What do you need to think about or do before you feel ready to have the conversation with your child? What s your biggest fear about having the conversation with your child? 3 Institute for Healthcare Improvement

52 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Step 2: Get Set Okay, I m ready to have the conversation with my child. But how do I start? What do I say? There are no right words and no wrong words. We can t tell you what to do, or what s right for your child, because this conversation is different for every single child, every single family. But we can tell you what works for some children. (And we would love to hear about what worked or may not have worked so well for your child.) The important thing is to be open to where your child wants to go what questions your child has, what they re thinking about. Listen carefully, and let your child guide where the conversation goes. Sometimes they feel like talking, sometimes they don t. And sometimes they re thinking about something that hadn t even occurred to you. As a parent, you want to know what matters most to your child and make sure you re doing what your child would want. Your goal is to find out what s most important to your child to meet your child wherever he or she may be. What makes your child uncomfortable? Or confused? Or angry? Or scared? What does your child want her doctors and nurses to know? What can you do to make sure your child feels safe? And comfortable? If your child is in the hospital, does he want to have his favorite stuffed animal? Or a favorite piece of clothing? Or a picture of a favorite place? Things will change over time. And children may have different questions on their minds at different times. 4 Institute for Healthcare Improvement

53 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Here is the advice of a mother whose child died at age 14 Dianne: In many pediatric cases, they go up and down and up and down, and they can be very near death but then rise again. I had to have several conversations with Austin because it looked like he was going to die several times. So, I asked Austin a series of questions to lead him to his own understanding. I asked, Do you think the doctors will be able to cure you? And he said no. And I said, I think you re right. It was really led by him. I would ask the questions, but the understanding was generated off of his responses to me. And here s the advice of a mother whose child died at age 9 Paula: As parents, I think we sometimes shut children down when they are open to the conversation. If they want to speak about death and dying, we want to comfort them by telling them not to worry they ll be okay. We need to follow their lead and let them explore the topic of death as we would let them explore any other topic of life. If a child has the bravery to bring up the subject of death, parents should take heart and follow this courageous lead. 5 Institute for Healthcare Improvement

54 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Well, that s interesting. What made you think about that? Perhaps your child asks out of the blue about Aunt Mary s funeral which took place two years ago, or wonders aloud where the neighbor s dog is now (the dog died three months ago) You could say: Well, that s interesting. What makes you think about that? Open the door, and see where your child takes you. Or perhaps one day your child asks, Am I dying? Instead of answering yes or no again, you could say: Well, that s interesting. What makes you think about that? Or, Do you think you are dying? Be open to your child creating memories about her life. She might say, I ll always remember how we went to grandpa s house every year for the 4th of July. Invite other memories. Here are some ways you could start the conversation You might reflect aloud upon the loss of someone close to your child a grandparent, another family member, a pet, etc. Remember when Grandpa died? Remember when Daisy died? If you and your child believe in heaven, you might ask Do you ever imagine what heaven is like? You might ask an open-ended question about what s happening with their illness You know, Dr. Jones doesn t think there s any more medicine to make your cancer go away And see where the conversation takes you. Or, Do you think the doctors will be able to cure you? 6 Institute for Healthcare Improvement

55 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Here are some things you might want to talk to your child about What would you like me to tell your doctors and nurses about how you want to be treated? What do you want me to tell them about how you don t want to be treated? What pictures would you like to have nearby? What music would you like to listen to? What food do you like best? What food do you NOT like? Who would you like to come visit you? What would you like to do? If you re very sick and may die, where do you want to be? Are there people you would like your special things to go to? What three things do you want your doctors and nurses to know about you? What makes a good day for you? What makes a bad day? You might want to print out My Wishes a booklet written in everyday language that helps children express how they want to be cared for in case they become seriously ill. It was created by Aging with Dignity, the folks who developed Five Wishes and is available at You could print it out and let your child fill it out. Or if they aren t able to fill it out themselves, you could be their secretary and write down what they want people to know about who they are and what matters to them. Perhaps it is too much to have your help, so maybe a trusted family member, friend, or hospital staff member can help. 7 Institute for Healthcare Improvement

56 This document does not seek to provide legal advice The Conversation Project. All rights reserved. What do you want me to tell your doctors and nurses about you? And about how you want them to treat you? Five things I want my doctors to know about me. What are the three most important things that you want your friends, family, and doctors to know about you and what matters to you? Things I really like. Things I really don t like. 8 Institute for Healthcare Improvement

57 This document does not seek to provide legal advice The Conversation Project. All rights reserved. You might want to help your child create a list of Things That Matter to Me You might want to help your child create a list of things that matter most to her, and post it prominently for all the care team to see. Please don t talk down to me. No baby talk! Please don t stand around my hospital bed and talk about me as if I weren t there. Please answer my questions all of them. And be honest! Please don t turn on the light when I m asleep. Please don t talk loudly. Please ask before touching me. What if my child doesn t want to talk? If you have a two-minute conversation, and your child stops talking it s okay. It just means he s done for now and needs some time to digest. Follow his lead. These are hardly ever one-time conversations; they often happen in bits and pieces over time. The main thing is to let your child know that you ll be there whenever he does want to talk. He can tell you what s on his mind, and you ll be there to listen. Just let him know that it s okay for him to ask you any question at all, or tell you anything at all. Or just be quiet. What if your child is a baby or cannot talk? While in many cases a conversation with a seriously ill child may not be possible, communication takes many forms. There are unspoken conversations between a parent and a child. It s also important for parents to have conversations with each other, and with other family members, to make sure everyone is on the same page. And parents should have ongoing conversations with members of the medical care team to explore preferences and values and guide decision-making. 9 Institute for Healthcare Improvement

58 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Here is the advice of a mother whose child died at age two... Blyth: Over a period of two months, my husband and I had a series of conversations where we sat down and talked together about our care goals and values for our daughter. What would quality of life mean to her and what it would mean to us? What were interventions that she wouldn t want done to extend her life? How would we know when she was ready to die? And we trusted that we would know it. We said that there would be no feeding tubes, but then we changed that to treat her second pneumonia with an NG tube because we felt that she wasn t ready to go. We felt this by holding her in our arms, looking at her, looking at each other, and we said she isn t ready yet. In the third pneumonia, we did the same thing, and figured that the quality of life would no longer be what she wanted so we would not treat this pneumonia, and five days later she died. What if I need more help? There may be some conversations that you will feel more ready for once you have talked to your child s medical care team in greater detail. You may also want to ask that a member of the care team be present with you when you begin this conversation with your child. You can always ask someone on your child s care team for help. You can say, I d like to talk to my child about what s happening, but I d like some advice and help. Is there someone [a doctor, a nurse, a social worker, a chaplain] who could help me? 10 Institute for Healthcare Improvement

59 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Step 3: Go Now that you ve had the conversation with your child not just one, but the first of many conversations you have a good idea of what s on his mind, and what matters most to him. You re in a good position to make sure the team caring for your child knows what s most important. You re in a good position to make sure your child s questions get answered. And you re in a good position to make sure your child s wishes are respected. In short, you are the keeper of your child s wishes and your child s most important advocate. This step is about making sure your child s care team knows your child s wishes and follows them as much as possible. Research has shown that the more actively engaged parents are in decision making, the more at peace they feel after their child dies. Once you have started conversations with your child, you can be extremely helpful in advocating for your child, or helping her advocate for herself. If you have questions for the medical team, ask them. No question is too small. Keep asking until you have answers that make sense to you and your child. Here are some examples: I have some questions I d like to ask you about my child. Is now a good time? What does it mean when the machine beeps? Can you explain what you mean when you say [ ]? What should I be on the lookout for in the next [hours, days, weeks]? Could you help me understand the best-case scenario and the worst-case scenario? 11 Institute for Healthcare Improvement

60 This document does not seek to provide legal advice The Conversation Project. All rights reserved. In many hospitals, it is common for clinicians to round as a team. Some hospitals invite families to listen to discussions on rounds. If this is not possible, or if your child s physician is not able to stop rounding when you have a question, ask when she can come back. Often, your child s nurse or social worker can be called upon to help find a time to have your concerns addressed. How can I be the best advocate for my child? How can I make sure the care team knows what matters most to my child? If your child has made a List or asked you to write down their List Post your child s list right by their bedside or on their door. Encourage your child s care team to read the list. The care team also wants what is best for your child. Engage in a discussion with the care team about the items on the list. Recognize that your child and the care team work together to address what is on your child s list. Advocate for your child while recognizing that some items could be in conflict with good medical care of your child (not wanting any more pokes or any more tests when they may be vital in providing appropriate care). It is important to come together and look at the list. 12 Institute for Healthcare Improvement

61 This document does not seek to provide legal advice The Conversation Project. All rights reserved. If your child has filled out the My Wishes booklet or asked you to be their secretary Share it with your care team, perhaps making a copy for them to include in their medical records or to share as your child s care team members change. Talk over items in the booklet that you think are particularly important for the care team to know about. What do I do if my child s condition worsens? Make it very clear to your child s care team that you want them to keep you informed about what is happening with your child. You might ask How are things changing? Do you know what we can expect in the next few hours/days/weeks? Please keep me updated on any changes in my child s condition. What decisions about care might come up in the next few hours/days/weeks? 13 Institute for Healthcare Improvement

62 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Step 4: Keep Going This is the most difficult step of all. In Step 1, you began to understand that having the conversation with your child shouldn t be harmful far from it. It could be the most important gift you could share with your child. In Step 2, you actually had the conversation the first of many. You listened carefully to whatever your child wanted to talk about, whatever was on his mind and you let the conversation go wherever he wanted to take it. In Step 3, you embraced your role as your child s advocate. You made sure that your child s care team knew what mattered most to your child and your family and followed your child s wishes as much as possible. You made it clear to the care team that you wanted them to keep you informed and updated as your child s condition changed. In this step, you need to do your most important job of all as a parent: You need to be there for your child as she becomes sicker, and faces death. What do I say if my child asks, Am I dying? In Step 2, we talked about listening carefully to understand what s on your child s mind, and being open to following their lead. If your child asks, Am I dying?, keep the door open You could turn the question back to them. Say, Do you think you re dying? or What makes you think about that? And see where they take you. You might say, You know, Dr. Jones doesn t think there s any more medicine to make your cancer go away. And see where that takes you. Dianne: In Austin s case, we said that the doctors are going to continue to try their very best to find a cure, they will never stop, but they may not be able to find a cure in time to beat this disease. The disease might get worse. But the doctors have promised that they will keep you free from pain. 14 Institute for Healthcare Improvement

63 This document does not seek to provide legal advice The Conversation Project. All rights reserved. What happens if I cry in front of my child? Kathy: The parent might say, I don t want him to know that I m sad. And I might say, Well, you are sad. You re sad because the doctors can t cure his disease, there s no more medicine that makes sense. You re sad because he s going to die before he lives a whole life. What if my child is afraid of making me sad. What do I do? Kathy: I might say, crying is something we do when we are happy or when we are sad. I ask the child, Why are you afraid to have your mom cry? And they might say something like, It will make her sad that the doctors can t make me better. And then I might say, She already knows this and she s already very sad and she loves you so much. I wonder if you talk about this if it might make you feel better. That often works. Tears are okay. Will talking about death make it come true? Dianne: It is important to remind parents that just because you have this conversation does not mean that you are hastening death. I ve seen families that think that just because you have the conversation, their child will give up and die. Blyth: That is so huge. The magical thinking that parents do around control for their kids is supersonic. That happens for all people for all ages, but that is especially true for parents who desperately want to have some control over what is happening to their kid. And, the superstition that if I talk about it I m making it happen is so huge Institute for Healthcare Improvement

64 This document does not seek to provide legal advice The Conversation Project. All rights reserved. When death neared Blyth: Last week, I heard a parent say she was at peace with her child s death as much as she could be. She said that he died on his own terms. The terms include where you want to die, how alert you want to be. This child slipped away quietly while no one was paying attention and the mom just thought, this is exactly what he would have wanted and needed to do. She believed that he was trying to protect his mother. So he didn t want her to have to say goodbye in that moment so he just slipped away when no one was looking. Paula: When Lydia broached the subject of death, she d been battling cancer for a year and a half. She asked, Do you think God would let me see myself as a teenager if I died now? Yes, I said. Just ask That s when I opened the door further, and asked the hard questions. Surprisingly, we were able to laugh a little as we discussed the possibility of keeping an urn with her ashes in the house. Lydia thought that would be gross. By the end of the conversation, Lydia had decided where she wanted to be buried, the color of her coffin, and other special things she d like done at her funeral. I am grateful we had the hard conversation. Once that was over, the door remained open for occasional questions and discussions over the last six months of Lydia s life. I was able to assure her that although I d never want to live without her that I would be able to, just as she and I were able to keep living when my mother died the year before. We had sad days, but we were able to have good days as well, I said. I could see her contemplate the situation as she remembered the grief process our family had been through. When death neared, my daughter and I were able to comfort one another and leave nothing unsaid. Lydia was able to tell me when she felt her time was coming to an end. I was able to let her know that I thought Grandma and God would greet her on the other side. Kathy: One of the things that I had to learn is what I think would be a good death isn t necessarily the same for all parents. I would have been devastated if my child died in their sleep. But another mother told me, How blessed am I that he was so confident in my love that he could slip away without another word. As a health care professional, I thought, Note to self don t assume you know. Just because it would be the most painful death for me, it was the most blessed death for this mom and her son. 16 Institute for Healthcare Improvement

65 This document does not seek to provide legal advice The Conversation Project. All rights reserved. A word about siblings Siblings go through grief in their own way. Kathy: You might have four children of different ages, and it might be hard to get them all on the same level of understanding. It is perfectly reasonable for a child to say, When [my brother s] done being dead, can we do this? Or a 16-year-old sibling that closes the door for a while, is okay. We need to let parents know that children need to go through this grief in their own way, and that this will impact them for the rest of their lives. Dianne: Each child within each age group will have a different understanding of what death is. Each child has the right to have this conversation individually and then together as a family. It s imperative to include healthy children and siblings. Then, if they are comfortable, they should have conversations with the dying child. Encourage the sibling to talk about the impending death. In hindsight, the families that I have spoken with throughout the dying process have been thankful that they have sat down with the sibling to talk about the death rather than not talk about it. And I encourage siblings to have conversations with their dying brother and sister or write them a letter if they don t feel comfortable verbalizing what they feel. Kathy: The other thing that we will say when children are home on hospice, is to assign an adult to each healthy child an aunt, a friend, etc. so that there s an adult who can just be in charge of those siblings in the couple hours before the death and then after the death. Then the children can be a part of this experience, but they can leave and walk into the backyard for a minute, and someone has their eyes on that child. It lets the grieving parent be really present in that moment. We have worked with children who say, I can t be there, I won t be there. I have to go to school. You can t force the siblings to be there, but you can certainly encourage it Institute for Healthcare Improvement

66 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Resources Here are some books you may want to read On Death and Dying by Elisabeth Kübler-Ross Just re-released with a new foreword by Dr. Ira Byock; the classic book written following EKR s hundreds of interviews with dying patients. Has helped millions. On Children and Death by Elisabeth Kübler-Ross Based on a decade of working with dying children, this compassionate book offers the families of dead and dying children the help and hope they need to survive. In warm, simple language, Dr. Kübler-Ross speaks directly to the fears, doubts, anger, confusion, and anguish of parents confronting the terminal illness or sudden death of a child. Tunnel and the Light by Elisabeth Kübler-Ross It contains the Dougy Letter, which is written to an eight-year-old as a way to explain all of life, which includes death. On Grief and Grieving by Elisabeth Kübler-Ross and David Kessler Just re-released with a new foreword by Maria Shriver. The Private Worlds of Dying Children by Myra Bluebond-Langner (Princeton, NJ: Princeton University Press; 1978.) The death of a child, writes Myra Bluebond-Langner, poignantly underlines the impact of social and cultural factors on the way that we die and the way that we permit others to die. A moving drama constructed from her observations of leukemic children, aged three to nine. 18 Institute for Healthcare Improvement

67 This document does not seek to provide legal advice The Conversation Project. All rights reserved. The End of Life at the Beginning of Life: Working with Dying Children and their Families by Nancy Cincotta (clinical director of Camp Sunshine and a LICSW) a chapter from the book, Living with Dying. While the chapter and the book in which it is published are written for a clinical audience (doctors, social workers, chaplains, nurses etc.), parents may find this compassionate, sensitive, and objective discussion of how to support parents and dying children to be helpful. It provides a bird s-eye view of family dynamics, parent-child dynamics, and provider-parent dynamics. The chapter is especially appropriate for parents of older children who are sick. Scarlet Says Goodbye by Christine Thompson Grief/activity book for children. For Clinicians Palliative Care for Infants, Children and Adolescents: A Practical Handbook by Brian S. Carter (Editor), Marcia Levetown (Editor), and Sarah E. Friebert. Second Edition. Johns Hopkins Press; (Note especially the chapter on Communication.) There are few things requiring more expertise, delicacy, and compassion than caring for an infant, child, or young adult with a life-limiting condition. Written by leading researchers, clinicians from relevant disciplines, family members, and advocates, this practical guide provides professionals involved in pediatric palliative and end-of-life care with comprehensive information in a single volume Institute for Healthcare Improvement

68 This document does not seek to provide legal advice The Conversation Project. All rights reserved. Here are some websites you might find useful Children s Hospice and Palliative Care Coalition Family resources, content-rich site Communication Counts Free downloadable toolkits Courageous Parents Network Resources for parents of children with life-limiting illness National Organization of Rare Disorders Content and resources for families of children diagnosed with rare disorders Please share We hope you will share this Starter Kit with other parents. And we invite you to share your stories on The Conversation Project website to help other parents learn and benefit from your experience Institute for Healthcare Improvement

69 For people with serious illnesses and their families, palliative care provides relief from pain and other symptoms and supports the best possible quality of life for the longest possible time. There are many misconceptions about what palliative care is and when people receive it. Do you have the facts? Palliative care can begin at the start of a serious illness and be given alongside treatments designed to combat the disease. It can be an important component of treatment for long-term progressive conditions like cancer, Parkinson's disease, kidney disease, multiple sclerosis (MS), and heart disease. People who receive palliative care may live longer and have a better quality of life than people with similar illnesses who don t receive palliative care. Hospice is a type of palliative care program for people in the final months of life. Like other forms of palliative care, hospice can improve quality of life and be an important source of care and comfort for patients and their families. Palliative care and hospice can be received at home, in the hospital, through an outpatient clinic, and in many other settings. While there are doctors and nurses who specialize in palliative care, primary care doctors, social workers, chaplains, nutritionists, pharmacists, therapists, and other professionals also play important roles. As part of a patient-centered approach, palliative care,including hospice, allows patients and their families and friends to make plans that reflect their goals and preferences. Often, palliative care allows seriously ill patients to avoid stressful trips to the hospital and spend more time at home with loved ones. All people with advanced serious illness should have access to skilled palliative care services, including hospice as appropriate, in all settings where they receive care.

70 Reflective Listening Listening looks easy, but it s not simple. Every head is a world. Cuban Proverb Reflective listening is a primary skill in outreach. It is the pathway for engaging others in relationship, building trust, and fostering motivation to change. Reflective listening appears deceptively easy, but it takes hard work and skill to do well. Sometimes the skills we use in working with clients do not exemplify reflective listening but instead serve as roadblocks to effective communication. Examples include misinterpreting what is said or assuming what a person needs. It is vital to learn to think reflectively. This is a way of thinking that accompanies good reflective listening that includes interest in what the person has to say and respect for the person s inner wisdom. Its key element is a hypothesis testing approach to listening. What you think the person means may not be what they really mean. Listening breakdowns occur in any of three places: So you feel It sounds like you You re wondering if There are three basic levels of reflective listening that may deepen or increase the intimacy and thereby change the affective tone of an interaction. In general, the depth should match the situation. Examples of the three level include: 1. Repeating or rephrasing-listener repeats or substitutes synonyms or phrases; stays close to what the speaker has said. 2. Paraphrasing-listener makes a major restatement in which the speaker s meaning is inferred. 3. Reflection of feeling- listener emphasizes emotional aspects of communication through feeling statements-deepest form of listening. Varying the level of reflection is effective in listening. Also, at times there are benefits to overstating or under-stating a reflection. An overstatement (i.e. an amplified reflection) may cause a person to back away from a position while an understatement may lead to the feeling intensity continuing and deepening. (Adapted from Motivational Interviewing materials by David B. Rosengren, Ph.D. and from Motivational Interviewing by Miller & Rollnick, 1991)

71 A Guide for Group Discussions on End-of-Life Decisions

72 Talking It Over is produced on behalf of the California Coalition for Compassionate Care, organizations committed to improving end-of-life care for individuals and their families throughout California. Support for this Guide is provided through grants from The Robert Wood Johnson Foundation and Sierra Health Foundation. This Guide could not have been produced without the significant contribution of the individuals and organizations listed on the inside back cover. Talking It Over can be downloaded at CoalitionCCC.org. Coalition for Compassionate Care of California 1331 Garden Highway, Suite 100, Sacramento, CA (916) ; September 1999; Revised July 2014

73 Table of Contents Introduction 1 Meeting Preparation 2 How to Use this Discussion Guide 2 Role of the Discussion Leader 3 Tips for Recruiting Participants 5 Session 1: Exploring your Personal Views 6 Background Information for Discussion Leader 6 Session Outline 1 7 Tools: Views on Dying 8 Personal Reflection 10 Session 2: Talking with Loved Ones 12 Background Information for Discussion Leader 12 Session Outline 2 14 Tools: Talking in Advance 15 John and Marsha 16 Ellie Williams 17 Session 3: Making Tough Decisions 18 Background Information for Discussion Leader 18 Session Outline 3 19 Tools: Making Decisions for a Loved One 20 Facing Death 21 Resources 22 Working with Different Ethnic/Cultural Groups 22 Related Topics/Finding Speakers 26 Additional Material 27 Acknowledgements 28

74 Talking It Over A Guide for Group Discussions on End-of-Life Decisions Introduction This Discussion Guide was developed in response to concerns voiced by the public and healthcare professionals that: Many people never think about their own views and values regarding end-of-life decisions until a crisis hits, when decision-making is most difficult. People often have a hard time talking with their loved ones and healthcare professionals about the last phase of life. There are few opportunities to consider this sensitive subject in a supportive environment. In the past, discussions or workshops on end-of-life issues focused mainly on advance directives (documents such as a Living Will or Durable Power of Attorney for Health Care). However, other aspects were often not addressed how individuals regard the last phase of life, their willingness to talk to their families and healthcare providers, and the values important to them when difficult decisions are needed. Experience has shown that when family members have not talked with each other about end-of-life issues, advance directives may not resolve difficult situations. Talking It Over provides a means for individuals, in an informal group setting, to explore personal views and interpersonal communication on the subject of end-of-life care. It is designed for members of congregations, community and healthcare organizations, classes and senior groups interested in interactive, small group discussions. Though the Guide can be used by healthcare professionals and experienced facilitators, it is written so that anyone regardless of his or her background can feel comfortable using it. The Discussion Guide provides the format and tools for three inter-related group sessions. However, it does not include a specific discussion about advance directives, a topic which requires more detailed knowledge than nonprofessional discussion leaders may have. If you want to include an advance directives workshop as part of your program (and many of your participants may want this), see page 26 for information on finding speakers. In addition to the format for the three sessions, the Guide also includes: How to Use this Discussion Guide Role of the Discussion Leader Tips for Recruiting Participants Working with Different Ethnic/Cultural Groups Related Topics / Finding Speakers Additional Material

75 Meeting Preparation Face the thing you fear, and you do away with that fear. Author unknown How to Use this Discussion Guide The three sessions included in Talking It Over are designed to be held consecutively, for example, once a week for three weeks. Each of the sessions takes one to four hours, and each builds on the work of the previous one. The titles are: Session 1: Exploring your Personal Views Session 2: Talking with Loved Ones Session 3: Making Tough Decisions Materials for each of the three sessions include: Background information for the discussion leader that describes the purpose of the tools being used in the session. A step-by-step outline of the session to assist the discussion leader. The tools that form the basis for most of the discussion. Adapt the Guide to your needs Talking It Over can be adapted to the needs and interests of different groups, settings and available time. You may choose to conduct only one or two sessions, combine sessions, use different discussion tools or develop a longer series with additional topics. For example: If you are working with a faith community, you may want to include relevant scriptures or religious teachings. If you already are conducting a workshop on advance directives, consider adding one or more of these sessions. If you are working with different ethnic or cultural groups, refer to page 22 for suggestions on adapting the format and content. If you have a large group (e.g., in a classroom or conference setting), present the discussion tools to the full group, then break into smaller groups for discussion. The optimal group size for interactive discussion is 8 to 12 people. If you have a group that is experienced with this subject, they may be ready for more detail about medical, legal or spiritual aspects of end-of-life care. However Talking It Over is used whether in small groups or large, on its own or as part of a longer series its purpose is to help people think and talk about their experiences and views on end-of-life issues. 2

76 The Role of the Discussion Leader As discussion leader, your role is to help those attending get the most out of their participation. First and foremost, you must be comfortable with this subject yourself in order to facilitate discussion with others. Though you are not expected to be an expert on death and dying (nor do you need to be a professionally trained educator, facilitator or healthcare provider), there are some aspects of this role that are particularly important in making these sessions a valuable experience for participants and for you, as well. Setting the right tone for interactive discussion Clarify your role at the beginning of the session that you are not there to lecture or to provide answers but rather to lead the discussion. If participants do not know each other well, have self-introductions at the start of each session. You may also want to ask each person to say something about him/herself, such as why he/she is attending. It also helps to have name tags when the group is a new one. At the first session, it is useful to mention some ground rules: o There are no right or wrong answers. o Everyone's view is respected. o We're all here to learn from each other. Encourage each person's participation in the discussion. Bring quiet participants into the conversation by asking what they think, but if they seem reluctant, do not insist. Useful techniques Use the example questions in the Session Outline to stimulate discussion, but don't feel bound to stay with these questions or to ask them all. Avoid focusing on your own views or experience; however, if participants are hesitant to begin, you may want to break the ice with a personal observation or experience. After asking a question, allow the group to guide the discussion through the exchange of views and experiences. If you ask a close-ended question (one that can be answered yes or no), encourage further discussion with an open-ended question, such as "Why do you think so many people have a difficult time? Remember that silence is also OK. People sometimes need to have a moment to think or reflect before responding. If you are confused by someone's response, chances are others also may be. Ask for clarification. Pay attention to the amount of time you have so that you don't have to end the discussion abruptly. It's helpful to alert the group when there are only a few minutes left. 3

77 Be prepared For some participants, this topic may bring up memories of the loss of loved ones. Since emotional responses are common, it's a good idea to have a box of tissues on hand. Personal stories are often the cornerstone for these discussions. But if an individual story goes on too long, you may need to gently move the attention to others in the group. If you are asked a question that you can't answer (for example, a medical or legal question), acknowledge that you don't know. Others may know the answer or someone may volunteer to find out. Sessions that explore more detailed medical or legal issues can be scheduled for another time (see Related Topics/Finding Speakers, page 26). 4

78 Tips for Recruiting Participants In some settings classrooms, adult day care, support groups you may have a captive audience because they are part of an established group. However, you may be scheduling this series of discussions as a new program without confirmed participants. Optimal size for discussion groups is 8-12, and there are things you can do to encourage good attendance. Create an appealing message When publicizing the sessions, use inviting, eye-catching titles. Be creative. Most people are not drawn to a program announcing "death and dying" as the subject. Focus on the role people play in caring for their loved ones. Although many would rather not consider their own mortality, people are quite concerned and interested in how they can care for a family member. If you are arranging a new program in a specific setting, have a person in a leadership position announce and/or recommend it. Do not rely on written announcements alone. If potential participants are people you know, don't be shy the most effective way to recruit is for you to personally invite them! One way to encourage attendance is to include those who have personal experience with this topic. People generally respond well when told that their experience can help others. Consider logistics When seeking a setting for the program, consider community-based organizations (such as faith communities, senior groups, adult education classes and service clubs) that regularly schedule meetings on a variety of topics. Such organizations often welcome new program ideas and speakers. Find out the hours and days that attract the best attendance. If possible, try not to compete with other programs being held at the same time. When publicizing the program, create and circulate a simple flyer; ask people to RSVP. A good discussion is difficult if there is low attendance (fewer than eight). It is also helpful to call everyone one to two days in advance with a reminder of the meeting. Arrange the room to encourage interaction. Have people sit in a circle or around a table where they can see one another. Adjust lighting, room temperature and noise level, if possible, to make the room conducive to comfortable conversation. Provide refreshments. A snack and drinks are usually enough and create a comfortable, relaxed environment. If refreshments will be provided, announce it on the program flyer. Food has a mysterious way of attracting interest! If needed, arrange for childcare or transportation these are common barriers, particularly for working parents, people on fixed or low incomes and seniors. 5

79 Session 1 Exploring Your Personal Views The deep question is: How do you want to live? How do you want to be in this period of your life? Michael Lerner, M.D. Healing of the Mind by Bill Moyers Background Information for Discussion Leader The purpose of this session is to help participants: Consider the variety of views on dying. Reflect on influences that have shaped their views about death and dying. Feel more comfortable discussing their views openly with friends and loved ones. Tools Used in Session 1 Views on Dying This page includes quotes and comments from well-known individuals, authors and poets, as well as others thinking about or facing their own death or that of a loved one. Presented as a collage of thoughts, Views on Dying helps participants understand some of the issues without delving into personal discussions. Personal Reflection This questionnaire helps participants begin reflecting on influences and experiences that have shaped their views about death and dying. Question 5: "What about the process of dying concerns you most?" introduces the importance of sharing these concerns with a loved one. As the follow-up activity, participants are asked to take home a blank questionnaire and share it with a family member or friend. Before the session, make sure you have the following materials: Name tags and marker pens (if needed) Box of tissues Enough copies (double-sided) of Views on Dying for participants Enough copies (double-sided) of Personal Reflection for participants (and extras for them to take home) Pencils or pens for participants Session outline 6

80 Session Outline 1 Introductions (if needed) Discussion Leader Explain your role and ground rules (see page 3). Present purpose of session: To consider the variety of views on dying To reflect on influences that have shaped your views about death and dying To feel more comfortable discussing your views openly with friends and loved ones Distribute Views on Dying Example questions for discussion: Which of these quotes/statements did you like and why? Are there any that you didn't like or didn't understand? Distribute Personal Reflection with pens/pencils Example questions for discussion: Which question was the most difficult for you to answer and why? Did any of the questions make you feel uncomfortable? Had you ever thought about these issues before? If you haven't done so, be sure to discuss question #5: What about the process of dying concerns you most? Example questions for discussion: Is your concern based on someone else's experience? Have you shared your concern with anyone? Did it make any difference talking about it? Participants Self-introductions. Group discussion. Each person completes questionnaire. Group discussion. Group discussion. Suggest follow-up activity: Take home a blank copy of Personal Reflection and ask a family member or friend to complete it. Then discuss the differences and similarities in how you both answered the questions. Announce the topic for the next session: "Talking with Loved Ones about End-of-Life Decisions" Take home one (or more) copies of Personal Reflection 7

81 Views on Dying If I d know I was gonna live this long, I d have taken better care of myself. Eubie Blake, Jazz musician Don't let go too soon, but don't hang on too long. Tuesdays with Morrie by Mitch Albom I want to enter death with my eyes open my ears open with no masks no fears... Claribel Alegria Latin American poet Often it comes down to a question of whether or not I can let go of this clinging on to life. Or can I let go of my mother or father? Do I trust that if I let go I will be upheld in grace and peace? Chaplain Hank Dunn Author William Saroyan on his deathbed In the beginning God,.... in the end God. Bishop Desmond Tutu With the energy of mindfulness, we can calm things down, understand them, and bring harmony back to the conflicting elements inside us. Thich Nhat Hanh Vietnamese monk 8

82 Bodies last longer than brains, support systems or savings accounts. People have the natural capacity to affirm and embrace life in the most difficult of circumstances. Another Countrytru ntry by Mary Pipher Pipher Death is an event in life. It is something that occurs in life rather than something that occurs to life. Days of Grace by Arthur Ashe Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light. Michael Lerner, M.D. The reason that I don't regret dying is that I have had a really good time. Author Studs Terkel Death is just a distant rumor to the young. Andy Rooney 9