Advance Care. Clinical. connections. ADVANCE CARE PLANNING: Uniting to Help Our Community

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1 Clinical connections A PUBLICATION FROM SUMMER 2018 IN THIS ISSUE 2 Conversations & Compassion at the End of Life 3 Palliative Care Partnership 4 ALS Educational Collaboration 5 Hospice Lightens Family Caregiver Burden STAY IN TOUCH LinkedIn linkedin.com/company/ hospice-of-the-westernreserve Professionals Homepage hospicewr.org/professionals Western Reserve CareLink hospicewr.org/carelink OUR MISSION Hospice of the Western Reserve provides palliative and end-oflife care, caregiver support, and bereavement services throughout Northern Ohio. In celebration of the individual worth of each life, we strive to relieve suffering, enhance comfort, promote quality of life, foster choice in end-of-life care, and support effective grieving. ADVANCE CARE PLANNING: Uniting to Help Our Community Advance Care Planning (ACP) is important every day, but National Healthcare Decisions Day, April 16, provides an opportunity to bring special focus to this need. Starting the conversation can be difficult. We all play a role in helping to meet the health care needs of the community. We see firsthand how devastating it can be if patients have not made their health care wishes known to their loved ones or health care providers. This year, several health care systems and community organizations are coming together as a group to provide a consistent voice and use our resources collaboratively to help educate the community. Our shared goal is to encourage people to not only create the appropriate documents, but to start conversations. These are conversations that should take place at family dinner tables, in our communities, and with physicians about what matters most, including near the end of life. Ideally, they should happen before a By Michele Seyranian medical crisis, when everyone is still healthy. On National Healthcare Decisions Day this year, we provided resources to help on our organizational sites. Many members of our regional health care collaboration also offered community educational presentations and have continued to do so on an ongoing basis. Dates and locations are shared via each organization s website and through social media. see Uniting, on back page NORTHERN OHIO S HOSPICE OF CHOICE REFERRAL hospicewr.org

2 Q&A Benjamin Li, M.D., The MetroHealth System Conversations and Compassion at the End of Life Benjamin Li, M.D. is the Director of the Cancer Center, Division of Surgical Oncology, The MetroHealth System. Dr. Li shares his insights on patient conversations and end-of-life care with Clinical Connections. Q: Dr. Li, how can physicians learn what matters most to patients about end-oflife care? A: I m delighted Dr. Benjamin Li to see that this topic is now being taught in medical schools. That wasn t always the case. At Metro, it s also a part of our residency training. Being a physician is all about life-long learning and this includes learning about endof-life care. There are many ways palliative and end-of-life-care are being incorporated into our lifelong learning process. Peer group educational programs, continuing medical education programs and web-based seminars are available for physicians interested in palliative and end-of-life care. There are also symposiums and conferences devoted to this topic. On August 31, the MetroHealth Cancer Center will host our annual cancer symposium. This year, we have devoted it to palliative and terminal care, and we are delighted that Hospice of the Western Reserve will be part of it. Q: At what point should conversations about goals of care begin? A: In all honesty, there is not one optimal time. There are many complexities and every individual patient and family is different. There are many schools of thought on this topic, but hard data is lacking. We do know there are important considerations. In collaboration with Hospice of the Western Reserve, we are exploring some of these concepts. Developing a bond of trust with the patient early is essential. Introducing the topic of hospice too early is inappropriate, but introducing it too late or not at all is detrimental. Seventy-five percent of patients with terminal illnesses are currently dying in hospitals. This doesn t honor what most people want for themselves. Introducing the topic when the prognosis indicates surgery and treatments are not going to be effective helps patients and their families get the full benefit from hospice and palliative care and addresses their needs in a respectful and compassionate manner. 2 Q: How and when do you recommend introducing the topic of completing Advance Directives (ADs)? A: First, physicians need to be comfortable. If they are well trained, at ease, and have a trusting relationship with their patient and loved ones, then a meaningful discussion about what the patient wants, what he or she is willing to give up, and ultimately, what s most important to her/him can be thoughtfully and compassionately broached. Q: Thinking about end-of-life care can be scary for patients and their families. How can physicians help normalize this topic? A: Well, first, we don t want it to get to the point where they can t speak for themselves. Whenever possible, we want to avoid placing the burden of decision-making solely on the family. Developing trust early with one s patient leads to more thoughtful and compassionate discussions between the physician and patient. This will help ease fears and enable the patient to understand

3 why communicating her/his end-oflife healthcare choice is so important. Having the choices documented takes the burden off the family. Q: Can you share a story that illustrates why helping patients communicate their end-of-life care choices earlier in the course of an illness is so important? A: I remember a patient who was thinking about her ADs, but had not completed them. This patient had an advanced GI malignancy. She had completed both chemotherapy and surgery, had done well initially. Unfortunately, her cancer recurred. In a short interim, it had advanced to a point where further surgery and/or chemotherapy was not helpful. Before she could complete her ADs, she developed a complication. Her cancer had eroded into her bowel. She presented to the ER in extremis. Because of her perforated bowel, and without ADs, she was taken emergently to the operating room. Surgery on a cancer-perforated bowel in an abdomen full of cancer is not going to be successful. As a result, she ultimately passed away, weeks after being in the intensive care unit. This scenario could have been avoided if she had her ADs completed. Q: Are there any final thoughts you would like to share? A: The importance of education, the trust between physician and patient, and the need to be comfortable and compassionate in caring for terminal patients cannot be stressed enough. The reality is that we will all die someday. In the past, physicians may have viewed their inability to cure as a failure. It is not a failure. It is important for physicians to view terminal care as part of our responsibility to our patients and families, to help them transition through this final phase. When a cure is not likely, the focus needs to be about what patients and their families need and want. We owe it to our patients and their families so they can find the meaning and closure that we all deserve at the end of our lives. Palliative Care Partnership Improves Patient Experience Across Care Settings Transitioning between care settings can be disruptive to patients. However, by working in concert to create a more seamless flow, the providers dedicated to caring for patients can create a more seamless transition across the health care continuum. With this goal in mind, Western Reserve Hospital and Hospice of the Western Reserve have entered a new collaborative relationship to more closely coordinate palliative, hospice and end-of-life care for the organizations respective patients as they transition between care locations in the community. All providers share the universal goal of maximizing satisfaction and reducing hospital readmissions so the benefits of the program are also extended to post-acute care settings where patients live and receive care at their facilities of choice. Benefits of the collaboration include: Accessible Palliative Care expertise to patients with serious illness to provide the highest quality of life early in the trajectory of their serious illness Western Reserve Navigator (WRN) services to provide on-site palliation or management of acute medical symptoms for patients; WRN is a communitybased palliative care program that aligns with the National Consensus Guidelines for Quality Palliative Care. WRN partners with the attending physician and his/ her health care team to provide an added comfort care component that improves patient outcomes. Vital communication linkage between care providers seeking optimum outcome for their patients Earlier and more effective engagement with patients regarding palliative and hospice care treatment options Joint participation in measurement of quality measures to improve patient outcomes Enhanced coordination of the community resources available to patients and families to further enhance their care and comfort The availability of comprehensive palliative and hospice care education for postacute care provider staff To learn more or schedule a meeting for your facility or practice administration, contact the Provider Relations Team at or cstrang@hospicewr.org. 53

4 Enhancing quality of life for ALS patients is a key focus at HWR this year. QUICK FACTS ABOUT ALS Educational Collaboration with ALSA Focuses on Enhancing Quality of Life This year, Hospice of the Western Reserve is collaborating with the Northern Ohio Chapter of the ALS Association (ALSA) to bring an educational focus to Amyotrophic Lateral Sclerosis, also known as Lou Gehrig s Disease. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. As their illness progresses, people with ALS lose the ability to walk, speak, and eventually, breathe. Although there is currently no cure, significant advances in research and treatment have been made through advocacy, funding and research efforts led by ALSA. The year-long educational collaboration allows Hospice of the Western Reserve clinical teams to gain a better understanding of the disease progression, symptom management strategies, psychosocial needs, specialized medications and more from ALSA experts. The expertise provided by ALSA is invaluable and allows us to further enhance the tailored plans of care delivered by our transdisciplinary teams, said Judy Bartel, Chief Clinical Officer. The continuing education curriculum was developed by the HWR Education team in conjunction with an internal Disease State Committee led by Bartel and co-chaired by Jennifer Stonebrook, Director of Access to Care, and Denise DiMare, Team Leader. The committee focuses on the needs of non-cancer patients, which are becoming a larger part of the overall hospice population. Each specialty plays an essential role in developing the individualized plan of care for each patient, so participants represent a broad cross-section of disciplines, Bartel said. Clinical team members involved include physicians, nurses, hospice nursing assistants, social workers, spiritual care coordinators, a pharmacist, bereavement specialists and volunteers. The curriculum focuses not only on delivering ideal care for our patients but strategies for providing optimal support for family caregivers, Bartel added. EDITOR'S NOTE Chief Clinical Officer Judy Bartel holds a Master s degree in Nursing and is a Certified Advance Practice Nurse. She is board certified in Palliative Care Management/ Administration and has been named a Fellow in Palliative Care Nursing. Number of people in the U.S. diagnosed daily with ALS 5,600 + Number of newly diagnosed ALS cases in the U.S. each year Number of Americans who may currently be affected by ALS sixty-seven Research dollars (in millions) committed by ALS Association to find effective treatments and a cure , Number of ALS patients receiving care from HWR * With recent advances in research and improved medical care, many patients are living longer, more productive lives. Half of all those affected live at least three years or more after diagnosis. About 20 percent live five years or more and up to 10 percent will survive more than 10 years. (Source: ALS Association) Average life expectancy in years of an ALS patient from time of diagnosis* 54

5 Hospice Lightens Family Caregiving Burden When a loved one has a terminal illness, family members often feel overwhelmed trying to balance work, children, home life and all the activities of daily living. The hospice model of care is uniquely equipped to provide the comprehensive support terminally ill patients and their families need. Although caring for a seriously ill family member is often viewed as a labor of love, the stresses and physical demands on family care providers can be enormous as the illness progresses and the complexity and intensity of the care required increases. Hospice removes a burden from both the patient and the family members. It not only improves quality of care, but decreases hospitalizations, re-hospitalizations and emergency room use. Most importantly, it allows each individual a choice in how to spend the final stage of his or her life. Hospice does its best work when life is measured in weeks or months, supporting not only patients - by managing pain and other chronic disease symptoms - but supporting the family members caring for them. Members of the hospice care team work with the family to teach techniques that make their job easier and their loved one more comfortable, such as how to safely transfer from a wheelchair into a bed without straining the back. The hospice team eases the caregiver s burden by arranging delivery of medically appropriate supplies directly to the home. Examples include walkers, wheelchairs, hospital beds and bedside commodes. A hospice nurse provides instructions and support to help family caregivers organize and administer medications, change dressings, and assist with care between visits. Our hotline provides around-the-clock access to a nurse. A hospice nursing assistant (HNA) frees up more family time by providing compassionate care that preserves the patient s dignity. The HNA assists as needed with toileting, showering, personal grooming, the changing of bed linens and other needs. It is vital that family caregivers take breaks to preserve their wellbeing. Hospice of the Western Reserve helps by providing respite care at one of its three homelike Inpatient Care Units, or by sending a trained, respite care volunteer to the home so family caregivers can run errands, meet friends or relax and unwind. Frequently, family business affairs must be put in order. Social workers can assist the patient and their family in accessing the community resources needed. Members of the transdisciplinary hospice care team such as a social worker or an advanced practice nurse can assist patients and families with completing Advance Directives (AD) which communicate the patient s end-of-life care preferences. A spiritual care coordinator is available to support family members as well as patients, if desired. The hospice care team provides coping strategies and resources and helps the entire family understand what is happening, and what to expect. Western Reserve Grief Services bereavement specialists help families prepare for the upcoming loss and provide grief support for 13 months after a loved one s death. SNAPSHOT: Family Caregivers of Older Adults in the United States 32 million Care for relatives age % Dip into personal savings 21 million Receive no paid or unpaid help 22 % Report a decline in their own health Sometimes, the course of a disease cannot be changed. However, hospice can change how a person approaches the rest of his or her life, providing comfort, dignity and quality time to families. Source: AARP, Caregivers in the U.S. report 5

6 Making Your Health Care Wishes Known One of the most important conversations you will ever have. Are you ready to get started? WE'RE HERE TO HELP "Uniting" from page 1 What s Next In October, Cleveland will be the second city in the country to host a weeklong event called Reimagine (San Francisco, Cleveland and then New York). Many of the members of our collaboration will be participating in the event. It will be a community exploration of death, frequently a taboo topic, and a celebration of life through creativity and conversation. Reimagine will extend the conversation about our mortality beyond health care to also include arts and entertainment, faith and culture, technology and design. It will bring diverse communities together in wonder, preparation, and remembrance. The events will be held in a variety of locations religious, arts and culture, medical, educational - with the purpose of changing how people perceive living and dying. EDITOR'S NOTE Michele Seyranian joined Hospice of the Western Reserve in As Chief Marketing and Business Development Officer, she is responsible for planning and implementing activities and programs that support HWR's mission and longterm goals. ELIGIBILITY QUICK REFERENCE GUIDE Is it Time to Make a Referral? Your partner in care, Hospice of the Western Reserve, has created the Eligibility Quick Reference Guide. Inside, you ll find important eligibility guidelines, practitioner reference materials and functional assessment tools. To request your free copy, call Clinical Connections is published by the Marketing Communications Team at Hospice of the Western Reserve. Contact the team at communication@hospicewr.org. For previous issues of Clinical Connections, visit hospicewr.org/clinical-connections. 2 Copyright 2018 All Rights Reserved