From The Field O C T O B E R 1 7 , 2 0 1 1 Changing Expectations for Care at the End of Life NANCY D. ZIONTS Chief Program Officer, Jewish Healthcare Foundation, and Chair, Western Pennsylvania Coalition for Quality at End of Life T he culture and system of care at the end of life present about, and planning for the course of their life, treatment unnecessary emotional, physical, and financial bur- options for serious illness, and, ultimately, reflecting on how dens for patients and their loved ones. Although this is they want to die. what we have come to expect, other realities are possible. The phrase “What we’ve got here is (a) failure to communi- CLOSURE CONVERSATIONS AND SELF- cate” is a famous line from the 1967 film Cool Hand Luke. In DIRECTED EDUCATION the movie, Luke, a prisoner played by Paul Newman, is con- The Closure initiative is an education, planning, policy, and fronted by the warden who utters this line as he admonishes outreach initiative with a goal of redefining quality care for Luke for failing to understand the one-way nature of the com- people with serious illness by raising expectations and munication and the absence of his right to independent action empowering them to seek a different health care experience due to his present circumstance. at the end of life – one that aligns with their values, beliefs, It is a failure to communicate that underscores much of the and wishes, as well as their health status. improvement needed when it comes to care at the end of life. Providers lack adequate training and practice in one-way and especially two-way communications skills. Physicians and CLOSURE VISION health care providers are often unwilling or unable to tell patients and their families “bad news” or even use the language • Patients and loved ones are informed about the of death and dying, which leads to difficulty communicating choices and challenges they are likely to face and frankly about the disease. As a result, patients are missing out provided with the resources available to help them. on true shared decisionmaking. • The resources and systems needed to support quality A failure to communicate is the often heard complaint end-of-life outcomes are widely accessible in institu- from patients facing serious illness or their family members: tional, home, and community-based settings; “No one told me my options,” “No one talked to me; they understood by physicians, patients, and families; and talked around me,” and “No one asked my opinion or what I appropriately funded to meet the needs of patients wanted.” The end result: families do not hear about valuable and loved ones. options like hospice or palliative care until much later than • Educational curricula, planning tools, and commu- they should – if at all. And many are unable to share their care nity support are widely available for professionals and wishes – or have them respected. We recognize that as a conse- community members. quence, billions of dollars are spent on terminally ill patients – much of that on patients who may not want or fully under- • End-of-life issues are openly discussed, with the stand the treatments being offered. This is frustrating since experience being viewed by society not as a period of patients who have made a different choice – opting for pallia- decline, but as meaningful and uplifting whenever tive and hospice care as part of their end-of-life planning – possible. often experience a higher quality of life and lower costs in their final days. Some even see their lives prolonged. So it is a failure to communicate, which has shaped much Through Closure Community Conversations, JHF helps bring of the Jewish Healthcare Foundation’s (JHF) current five-year together approximately 30 individuals (physicians, nurses, Closure initiative. Our goal is to get people thinking, talking pharmacists, long-term care professionals, social workers, palliative care professionals, attorneys, clergy, and patients The Coalition for Quality at End of Life (a stakeholder and their family members) for six facilitated conversation ses- group that JHF helped fund, found, and now leads) is working sions. These include an initial overview of palliative care and with policymakers and players across the care continuum to issues at the end of life; a clergy-led discussion of the influ- assure that education and training, coverage, and quality ence of religion on end-of-life decisions; an exploration of metrics throughout our state reflect best practice in palliative local tools and resources for advance planning; individuals’ and end-of-life care. JHF is convening the statewide good and bad experiences at the end of life; and a final session dissemination and implementation conference Closure: to develop a community strategy/action plan. Successful Developing a Statewide Strategy for End-of-Life Education and sessions have already been held by various religious groups Care Delivery in Harrisburg, Pennsylvania, in spring 2012. The and with the African-American community. Others are in conference will result in implementation strategies to affect planning stages in various neighborhoods and ethnic change in practice and establish a learning network for further communities. The lessons and techniques of Closure are being collaboration, policy, and practice change. packaged into a guide, which will make the Closure model fully portable and allow communities with diverse viewpoints STRATEGY: INFUSING A VISION OF CARE and traditions to approach the conversation and learning THROUGHOUT OUR WORK their way. JHF has already received over 50 inquiries for We recognize that changing culture will take more than indi- the guide. vidual grants or programs. It will require infusing a vision of At www.closure.org, JHF provides Closure 101, a dozen quality care at the end of life throughout our work – beyond web-based educational modules (for professionals and con- initiatives typically thought of as “end-of-life” or “palliative” sumers) exploring serious illness and advance planning from care. To get there, this is our strategy: diagnosis to grief and bereavement. The lessons were written by experts in language appropriate for both consumers and • Emergency Medical Services Champions are developing professionals. Site visitors can complete an on-line assessment curriculum to assure that emergency medical technicians that directs them to modules that will be the most helpful to are capable of conducting appropriate conversations with them. Locally, organizations may schedule a lesson or a series families about Do Not Resuscitate orders or Physician of face-to-face presentations/lessons through the Closure Orders for Life Sustaining Treatment when they respond speakers’ bureau of over 30 trained professional volunteers. to 911 calls. • Long-Term Care Champions will consider how to assure GETTING THE MESSAGE OUT – ANY WAY that palliative care education and consults are made available WE CAN for their residents and their families – even those with JHF is also promoting conversations around palliative care dementia. and the end of life through television, books, the internet, • Our demonstration projects – Community Care and statewide convenings. Transitions, the Accountable Care Network, Patient With JHF funding, our local PBS station, WQED, pro- Centered Medical Home, Caregiver, and Readmissions duced The Last Chapter, a new one-hour documentary that Reduction efforts – are each including appropriate strategies explores the significant medical, cultural, spiritual, and ethical for advance care planning and palliative care. implications surrounding the end of life. The documentary • Fellowship programs for graduate health professions takes viewers inside the hospitals, homes, and lives of pallia- students and interdisciplinary geriatric training models tive and hospice care recipients and providers. It is based on incorporate conversations around care at the end of life. the premise that everyone has a story – a life that can be bro- ken into chapters. For patients with a terminal illness the JHF is committed to implementing a broad agenda that sparks question becomes: Who will write the last chapter? It features the conversation and the needed culture shift, supports systems stories about real people facing serious illness and how they that improve the quality of end-of-life care for patients and and their families live, look ahead, and plan. It models behav- their families, and decreases unnecessary costs. Above all, we ior and inspires viewers to have those difficult conversations aim to eliminate the failure to communicate and its with their families and their providers so they may control implications for care at the end of life. their journey and achieve a more peaceful last chapter. Twelve Breaths a Minute is a special JHF-funded edition of Creative Nonfiction released in 2011. The anthology contains over 20 firsthand accounts from around the country – as told by physicians, nurses, patients, families, and clergy – on end- of-life care. Each story helps readers understand what worked, Views from the Field is offered by GIH as a forum what did not, and what was learned. for health grantmakers to share insights and experiences. If you are interested in participating, please contact Faith Mitchell at 202.452.8331 or fmitchell@gih.org.