10/3/2016 PALLIATIVE CARE WHAT IS THE DEFINITION OF PALLIATIVE CARE DEFINITION. What, Who, Where and When

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1 PALLIATIVE CARE What, Who, Where and When Mary Grant, RN, MS ANP Connections Nurse Practitioner Palliative Care Program Oregon Region WHAT IS THE DEFINITION OF PALLIATIVE CARE DEFINITION The Center for the Advancement of Palliative Care defines palliative care as: Palliative care, also known as, palliative medicine, is specialized medical care for people living with serious illnesses. It focuses on providing patients with relief from the symptoms and stress of a serious illness---whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses and other specialists who work with the patient s other doctors to provide and extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment. 1

2 PALLIATIVE CARE FACTS The number of in hospital palliative care teams in the United States has grown dramatically over the past decade. The prevalence of palliative care programs in U.S. hospitals with 50 beds or more has nearly tripled since 2000, reaching nearly 61% of all hospitals of this size. Palliative care is now a key standard of practice in leading health care organizations. 100% of the U.S. News Honor Roll Hospitals PC IN LEADING HEALTHCARE ORGANIZATIONS 100% of the U.S. News Honor Roll Children s Hospitals 100% of the top 20 NIH-funded medical schools 97% of the Council of Teaching Hospitals and Health Systems member organization 87% of the National Cancer Institute s designated comprehensive cancer center Palliative care is not hospice WHAT PALLIATIVE CARE IS AND IS NOT: Palliative care is not a death squad Palliative care is a multi disciplinary approach to the patient s condition at this point in their journey Palliative care allows the patient to continue to get treatment and to return to the hospital for services if needed. 2

3 Avoid inappropriate prolongation of dying GOALS OF BOTH PATIENTS AND CLINICIANS Relieving the burden on the family Achieving a sense of control Strengthening relationships with loved ones Ensuring that all medical options are considered in continuing to fight against the disease. PALLIATIVE CARE IN PORTLAND AREA---INPATIENT It has been an initiative for the Providence Health System for the past 8 years In the metropolitan area, each large Providence Portland Medical Center and Providence St Vincent Medical Center,has a Palliative care team based in the hospital. It is comprised of physicians, social workers, chaplains and nurses. They get referrals from the specialists, hospitalists and surgeons. In our two smaller hospitals, Providence Willamette Falls and Providence Milwaukie, there is one physician, social worker and chaplain who cover those facilities. The referrals can be to discuss goals of care, pain management and end of life discussions for the seriously ill. PALLIATIVE CARE IN TRI-COUNTY AREA---OUTPATIENT We have Eastside and Westside team that are comprised of two Nurse Practitioners, one to two social workers and a chaplain that covers both sides. We cover the areas that Providence Home Health services cover. That includes as far west as St. Helens, south Willamina, Sheridan, McMinnville and Woodburn. We work closely with the Home Health Palliative Care Teams; meeting weekly to do IDG and discuss shared patients. We meet with the Newberg Home Health Palliative Care team once a month for IDG and we are available by phone for questions. 3

4 WHEN IS PALLIATIVE CARE APPROPRIATE WHERE DO THEY RECEIVE CARE We in the outpatient team see patient s in their homes, assisted living, adult foster care homes and meet patient s and families in memory care units. When we meet with the patient we want the family members that the patient would want to be present. We like caregivers to be present, as well. If they are getting home health, we appreciate the presence of that team at the consult. Primary care providers have come to the consults, as well. BEFORE WE MEET WITH THE FAMILY We will look at the actual referral to determine why we are being sent out We may have to read the provider s notes over a period of time to determine what they are asking us to do We look for an advanced directive and a POLST We may need to speak to the specialist s involved and any other care teams such as Home Health providers. 4

5 WHO RECEIVES PALLIATIVE CARE HOW IS A CONSULT GENERATED Our office gets referrals from primary care providers, specialists, self referrals from families, skilled facilities. Many of our consults were patients that may have been in the hospital and the inpatient team couldn t get to them or that they had a consult and we are doing a follow up meeting. We will see all end stage organ disease, all neurological disorders; Parkinson s, Dementia; all cancer diagnosis, as well. We do not see patient s with chronic pain unless they have a terminal illness that is involved in their decline. They don t have to be Providence insured patients. There will be one NP and one social worker at each out patient consult. WHAT TO EXPECT FROM A CONSULT Help the patient get and understand information about their illness Help the patient communicate more effectively with their providers and family members Help the patient make important decisions about their health care, based on your personal values Give the patient expert advice on pain and symptom management Serve as a resource for your providers 5

6 WHAT A CONSULT MAY LOOK LIKE We get settled and make sure the patient is comfortable and can hear our discussion. We ask if they understand why were are there; most times we do an explanation of our service and who asked us to meet with them. We make sure that every one in the room has an introduction. The first part of our consult is to get to know the patient on a personal level, not just what is in their chart. CONSULT We do ask permission to ask these questions; where were they born, siblings, education, war time experience, married and how they met, what did they do for work and what have they done if they are retired. This gives us a good idea of how their recall is and what was important to them going through life. We then ask the patient and we ask permission to ask the family, how has the past six months been going? We allow the patient to respond first and then ask permission to check with their family members. We notice and acknowledge emotions CONSULT After hearing from everyone, we ask what do you know about your illness or what have the providers told you? This gives us an opportunity to share what we know about what is going on with the patient. We then ask if they are having any symptoms that we should be concerned about such as pain, difficulty swallowing, nausea, vomiting, weight loss, breathing, bowels and bladder, energy and mood. If they are having symptoms, what are they taking and is it helping. We ask how they are functioning; can they do their activities of daily living; such as bathing, dressing and feeding. Can they walk with or without assistance. 6

7 CONSULT We may take that time to talk about the disease, trajectory and answer questions for the family. We do a lot of education with regards to this part of the conversation. We then ask about the practical issues such as the Advanced Directive and the POLST. We may not get around to completing those documents but can do another visit. We then pull together our conclusion and plans for what we will work on. A note will go to the provider who requested our visit and our recommendations. KEY COMPONENTS TO THE DISCUSSION ADVANCED CARE PLANNING At the appropriate time in our visit we discuss the role of advanced care planning. We ask permission to proceed as many families and patient s either have not discussed it or don t want to. We assist them in selecting a health care representative. We explain that they will not make any health decisions, as the patient will do that, but that they will speak for the patient. We then ask if they have completed their Advanced Directive and explain the purpose and why they would like to consider doing that. 7

8 ADVANCED CARE PLANNING We then ask about the POLST and if they know what it is and if they have completed one. If they have one, we review it to be sure that those care choices selected are still current for them. We can fill out a new one for them if it is dated or their choices have changed. We go into a discussion on each section and have found that many times no one has explained the choices to them. ADVANCED CARE PLANNING We may wait and do the Advanced Directive after they have completed a POLST for the ease of completion. We ask that they share their wishes with their family, health care representative and their provider. We will document both of those discussion in the chart so that all the team understands the wishes. SYMPTOM MANAGEMENT We identify symptoms and where the patient falls on the Palliative Performance scale We assess the symptom burden; what can they do or cannot do for themselves and their family. We initiate a symptom management plan with the primary care provider or referring specialist. We will reassess the symptom burden within two weeks or sooner if needed and adjust the management plan. 8

9 SYMPTOM MANAGEMENT We continue to assess and plan for increased symptom burden as their disease progresses. We document in the chart the plan of care and any further recommendations. If we are assisting with pain management in a patient with a pain issue, we don t write the prescriptions for any narcotics. We can make recommendations and discuss it with the physician requesting information. CARE GIVING This is a multifaceted topic in palliative care We assess the current living situation; who is caring for whom, is the environment safe for all involved. We assess the current caregivers support and care giver fatigue We assess financial resources in order to plan for future care needs. We assess what the future care needs may look like; bedbound, unable to feed themselves or do any of their activities of daily living. CAREGIVING We assist with identifying community resources that may be able to offer care giving relief. We start assisting the family and caregivers to look forward toward what the needs will be and will they have to consider other options for care We document what the care giving looks like now, what it may look like in the future and what plans are either in place or are being explored. We try to encourage families to think about this before it becomes a crisis 9

10 SPIRITUAL SUPPORT We like to assess spirituality do they have a faith community in which they practice We like to explore meaning of life at this time, what is their hope and how are they coping. We like to ask what gives you strength as you go through this part of your journey? We explore the impact of their disease on their beliefs SPIRITUAL SUPPORT We affirm their belief based coping. We ask about grief support for the family even prior to the end as they are going through pre-emptive grief and who assists them with processing. If they need us to connect them with chaplain or with community resources we can assist with that We document this in the chart for the whole team to be informed. EMOTIONAL SUPPORT This is where the team assesses for coping, anxiety and depression We may assess any grief that either the patient or the family is experiencing, loss and role changes. We will assess how the family is coping with distress. We will offer and provide loss and grief counseling for all involved with the patient. We can, also, refer when necessary. 10

11 EMOTIONAL SUPPORT We will document a plan for on-going support and provide follow up as needed. DISEASE TRAJECTORY First is to identify the life-limiting illness or illnesses for the patient and family. There is the need to assess the patient s understanding of the disease and what they have been told about the disease process. There is the need, then, to assess the family s understanding of the disease. This can be important if they haven t been going to the medical appointments with the patients or if the patient hasn t been forthcoming with their disease Don t want to bother them, they are busy DISEASE TRAJECTORY The next step is to discuss the normal disease trajectory with the patient and family. The next steps are to discuss where the patient falls on that trajectory and what the future will look like as the disease progresses. The final step is to document the patient and family understanding and any questions that they may have for the medical team. 11

12 END OF LIFE PLANNING We ask permission to discuss end of life and we assess patient s prior experience with end of life either a friend or family member. We assess the family s prior experience such as taking care of a loved one in their home, and their understanding. We discuss resources available and possible end of life scenarios. We discuss management of end of life, such as Hospice and what that wool look like and document their wishes in the chart. FAMILY We assess and identify who is family for the patient and assess their level of involvement with the patient. We identify the roles of the family in the care of the patient. We assess and treat any anticipatory grief that may be occurring. We assess financial issues during and after death and engage community resources that may be available. We document those family functions in the chart HISTORICAL PERSPECTIVE Between 1900 and 2000 the life expectancy in the US rose from 47 year of age to 77 years of age. This has greatly affected the human experience of illness and dying. Technology has removed them from being the end of life to something that could be prevented. There are limitations of technology and modern medicine that have been realized in meeting the needs of people at the end of their lives. A new field of medicine called Palliative Care to look at the care patient s need to receive at the end of life. It is from the Latin word palliare to clothe. 12

13 HOSPICE The term hospice from the Latin hospitium means a place to host, receive and entertain guests or strangers. When traced to medieval times the original hospices were houses of rest and shelter for pilgrims and usually kept by religious orders The earliest hospitals and hospices were usually one entity. St. Bartholomew s Hospital in London, founded in 1123 became a secular hospital in 1546 for the ayde and comforte of the poore, sykke, blynde, aged and important. The modern hospice movement began with Cicely Saunders in London, Florence Wald in New Haven and Elizabeth Kubler-Ross in Chicago. These three women were able to bring professional and public attention to the societal abandonment of the dying and their families. HOSPICE Saunders was a nurse, social worker and physician. She is the acknowledged founder of the modern hospice and palliative care movements she founded St. Christopher s Hospice and she mandated education and research as a core component In 1963 at the request of Florence Wald, she gave a lecture at Yale University to medical students, nurses, social workers and chaplains on specialized care of the dying. In 1968 Wald took a sabbatical at St Christopher s and returned to America to start the hospice movement. In 1974 Wald founded the Connecticut House. It provided both home and inpaitent care creation of the Medicare Hospice benefit. COGNITIVE ISSUES IN PALLIATIVE CARE Many of our consults have to do with patient s with either mild cognitive impairment or dementia This is a difficult time for the patient and the family as far as care giving, symptom management and end of life planning. Many family members either have not been involved with the patient either due to marriage or separation. Once the spouse or caregiver dies, then the care falls on the other family members who are overwhelmed about what to do. We utilized the SLUMS or MMSE that has been given to the patient either in the hospital, care facility or their primary care providers office. 13

14 COGNITIVE ISSUES We assist the family in making safe choices for living situations for their loved ones If the situation is not safe, we are mandatory reporters and will let Adult Protective services know of the situation. This can include issues around not just living conditions but physical abuse, self neglect and family neglect, as well. If you have cognitively impaired patient s in your practice, it is important that their family have their advanced care planning in order. And make sure that the family understands the trajectory of the disease. QUESTIONS 14