The Last Chapter: Resources
Southwestern Pennsylvania Resources
Closure is an education, planning and outreach effort, developed by the Jewish Healthcare Foundation, focused on end-of-life care. Its goal is to redefine quality care for people with life-threatening illness by raising expectations and empowering them to seek a different healthcare experience - one that aligns with their values, beliefs and wishes, as well as their health status.
To help consumers and healthcare professionals make more informed decisions about end-of-life care, the Closure team developed Closure 101, a curriculum of educational lessons dealing with an array of complex end-of-life issues including important questions to ask your doctor, advance planning and the Medicare Hospice Benefit. Closure 101 explains the difficult concepts of prognosis, medical interventions and available care options in an easy-to-understand way. The curriculum contains 12 easy-to-follow lessons that can be viewed online. Click here for an overview of each lesson.
Compassionate Care For All
To help southwestern Pennsylvania residents more quickly find the information that they need, the Coalition for Quality at End of Life (CQEL), which is convened by the Jewish Healthcare Foundation, in cooperation with the Institute to Enhance Palliative Care at the University of Pittsburgh launched www.compassionatecareforall.org.
It’s a Web site for anyone in southwestern Pennsylvania who has a serious, life-threatening illness, or who cares for someone who is seriously ill. Click here to access the extensive directory.
There are a vast array of national organizations that can provide important information and resources about end-of-life issues. To help simplify your search for knowledge, we've developed a list of some of the most widely-used organizations that may be able to help you in the decision-making process.
Aging with Dignity
Aging with Dignity is a national non-profit organization with a mission to affirm and safeguard the human dignity of individuals as they age and to promote better care for those near the end of life. The organization is the home to Five Wishes, which has become a popular living will because it is written in everyday language and helps start and structure important conversations about care in times of serious illness.
The American College of Trust and Estate Counsel
The American College of Trust and Estate Counsel is a national organization of approximately 2,600 lawyers elected to membership by demonstrating the highest level of integrity, commitment to the profession, competence and experience as trust and estate counselors.
American Bar Association
The American Bar Association is the largest voluntary professional association in the world. With more than 400,000 members, the ABA provides law school accreditation, continuing legal education, information about the law, programs to assist lawyers and judges in their work, and initiatives to improve the legal system for the public.
The ABA can serve as a resource for information on estate planning and other legal issues dealing with end-of-life.
Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation.
Whether your family has had a child die (at any age from any cause) or you are trying to help those who have gone through this life altering experience, The Compassionate Friends exists to provide friendship, understanding and hope to those going through the natural grieving process. Through a network of more than 625 chapters with locations in all 50 states, as well as Washington DC and Puerto Rico, The Compassionate Friends has been supporting bereaved families after the death of a child for four decades. The mission of The Compassionate Friends is to assist families toward the positive resolution of grief following the death of a child at any age and to provide information to help others be supportive.
Duke Institute on Care at the End of Life
The institute was created to address and draw attention to the complexities of social, cultural, moral, theological, public policy, medical and economic issues involved in living and dying. Its mission is to promote the growth of knowledge and rediscover old wisdoms concerning care for the dying, synthesizing both to better care for the whole person at life's end.
Family Caregivers Alliance
Family Caregivers Alliance is a public voice for caregivers. Pioneering programs—information, education, services, research and advocacy—support and sustain the important work of families nationwide caring for loved ones with chronic, disabling health conditions.
Hospice Foundation of America
Hospice Foundation of America provides leadership in the development and application of hospice and its philosophy of care with the goal of enhancing the U.S. healthcare system and the role of hospice within it. The Foundation conducts programs of professional development, public education and information, research, publications and health policy issues. Its programs for healthcare professionals assist those who cope either personally or professionally with terminal illness, death and the process of grief, and are offered on a national or regional basis. Its programs for the public assist individual consumers of health care who are coping with issues of caregiving, terminal illness and grief.
Medicare is health insurance for people 65 and older; people under 65 with certain disabilities; and people of any age with End-Stage Renal Disease. The different parts of Medicare cover hospital insurance, medical insurance and prescription drug coverage. The Medicare Web site provides users with detailed descriptions of their benefits, the latest news and developments regarding coverage and information about providers and healthcare facilities.
National Academy of Elder Law Attorneys
The National Academy of Elder Law Attorneys, Inc. (NAELA) is a professional association of over 4,200 attorneys who are dedicated to improving the quality of legal services provided to seniors and people with special needs. NAELA members assist their clients with public benefits, probate and estate planning, guardianship/conservatorship, and health and long-term care planning, among other important issues.
National Hospice & Palliative Care Organization
The National Hospice and Palliative Care Organization (NHPCO) is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end-of-life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.With headquarters in Alexandria, Virginia, the National Hospice and Palliative Care Organization advocates for the terminally ill and their families. It also develops public and professional educational programs and materials to enhance understanding and availability of hospice and palliative care; convenes frequent meetings and symposia on emerging issues; provides technical informational resources to its membership; conducts research; monitors Congressional and regulatory activities; and works closely with other organizations that share an interest in end-of-life care.
Take Charge of Your Life Partnership
The Take Charge of Your Life Partnership is a nonprofit organization dedicated to educating, supporting and empowering all people to deal with end-of-life issues through an innovative network of consumers, professionals, community organizations and corporations.
Tragedy Assistance Program for Survivors (TAPS)
TAPS is a national nonprofit organization that provides comfort and support to all who are grieving the loss of a loved one in the military service. Founded out of tragedy in 1994, TAPS has established itself as the frontline resource to the families and loved ones of our military men and women. TAPS provides comfort and care through comprehensive services and programs including peer based emotional support, case work assistance, crisis intervention and grief and trauma resources.
University of Pittsburgh Institute to Enhance Palliative Care
In June 2003, the schools of the health sciences at the University of Pittsburgh, in collaboration with Family Hospice and Palliative Care, established the Institute to Enhance Palliative Care. The institute invited scholars and health professionals from diverse fields to join together to improve care for people who are seriously ill and dying in western Pennsylvania. The mission of the Institute is to improve the access to and quality of palliative care in western Pennsylvania by (1) educating health care providers regarding palliative care, (2) conducting research into the most effective ways to provide palliative care, (3) raising public awareness about the availability of palliative care, and (4) advancing public policies that support excellent, high-quality care for people who are seriously ill.
Books and Manuals
There is a vast collection of books and manuals dealing with end-of-life issues. From understanding the dying process to getting the healthcare that you want, below is a listing of books that might be useful if you are searching for additional information and background.
Guide to the Great Beyond: A Practical Primer to Help You and YOUR LOVED Ones Prepare Medically, Legally, and Emotionally for the End of Life
By Jane Brody
In her inimitably straightforward, informative and intelligent manner, New York Times health columnist Brody gives pragmatic direction to a concerned yet reluctant readership in this essential travel guide for the journey toward the inevitable. In pointing out that there is a difference between sensibly learning to accept death and surrendering, she reminds us that our attitude about living colors our approach to death. Thoroughly outlining all attendant demands and details for facing ones end, Brody provides facts and support for families and patients, and makes it appear entirely possible to go with grace. With bulleted lists itemizing what needs to be done and how to do it, short portraits and anecdotes throughout, Brody covers the importance of preparation; the necessity of an advance directive and why a living will is not enough; funeral plans; living with a bad prognosis and dealing with uncertainty; care giving; hospice; communicating with doctors; assisted dying; organ donation and autopsy; and legacies.
Crossing Over: Narratives of Palliative Care
By David Barnard, Anna M. Towers, Patricia Boston, Yanna Lambrinidou
The pain of loss can be overcome, says Attig, an "applied philosopher" and past president of the Association for Death Education and Counseling, by survivors who keep alive in their hearts their love for the departed. He repeats his message in each of some 50 brief chapters, using numerous anecdotes gleaned from his experiences as a counselor to explain how he has helped people cope with the loss of loved ones. Whatever the problem a survivor faces, Attig offers his mantra—keep love alive. If we can remember and sustain our connection with the departed, they will always remain with us. Among the death-related topics Attig covers are ways to help children deal with loss; ghosts; the solace of traditional religious rites; how to use memories and stories of loved ones in daily life; and finding the presence of loved ones in familiar places. He recommends that we honor the memory of the departed by acting as they would have wished us to, to work for causes they held dear or even just to reminisce about our relationships with them.
The Complete Eldercare Planner, Second Edition: Where to Start, Which Questions to Ask, and How to Find Help
By Joy Loverde
With a clarity and authority that comes from years of consulting experience, Loverde shares techniques and step-by-step tactics for all aspects of eldercare, from how to first broach the topic with an elder that he or she needs care and finding the best insurance coverage to emergency preparedness and managing the process of dying. Thirteen chapters are organized by a series of plans that instruct and advise the caregiver on how to research, prepare for, and manage a particular issue. An "Action Checklist" and, when applicable, a list of low-cost or free resources punctuate each chapter's end. The chapters on legal matters (estate planning, insurance fraud), money (cost-cutting strategies), and insurance (options beyond Medicare, supplementary coverage, long-term policies) will be particularly helpful to those first grappling with their elder's financial position.
Parting Company: Understanding the Loss of a Loved One: The Caregiver's Journey
By Cynthia Pearson and Margaret Stubbs
Filling a gap in the death and dying literature, coauthors Pearson (The Practical Psychic) and Stubbs, a developmental psychologist and educator, assembled this collection of personal accounts of caregivers of the dying. Many books provide help to the dying or grieving, but countless people embark on the care of a dying loved one with little knowledge of what to expect and few resources to draw upon. These engaging and unflinching narratives told by a demographically diverse group of caregivers provide a variety of viewpoints, from family members and friends to healthcare professionals and counselors. The caregivers tell their stories in their own words with minimal editing. Acknowledging that each reader may learn something different from these accounts, the authors limit interpretation and social analysis to the introduction and end commentary sections.
How to Get the Health Care You Want
By The Savvy Consumer's Guide to Navigating the Health Care System (Author) Laura Casey
In the labyrinth of modern healthcare, many patients lose out at some time or another to confusion, bureaucracy, inefficiency and uncaring providers. Without a savvy guide to differentiate good providers from bad, many of these patients are stuck with the luck of the draw when it comes to treating their illnesses. Laura Casey's How to Get the Healthcare You Want addresses this problem head-on, with proactive solutions that put the patient or patient's advocate back in control to secure the best available care. This book will help you navigate all the ins and outs of modern medical care with straightforward and helpful steps to improving the quality and efficiency of care. It addresses the topics most readers will be concerned about, such as how to work with uncooperative medical professionals or their staff, how to demystify insurance policies and clinician qualifications, and ways to handle billing errors and insurance disputes. The points are illustrated with stories of the author's or her family's experiences— anecdotes that ground the facts in real life and add a personal, conversational tone to the book. The stories provide concrete demonstrations of the ways a patient can receive excellent care based upon his or her individual standards and expectations.
And Thou Shalt Honor: The Caregiver's Companion
By Beth Witrogen McLeod (Editor) and Forward by Rosalynn Carter
It's no news that as American life expectancy increases; the fate of our elderly is in our hands. In her latest volume, editor McLeod, who was nominated for a Pulitzer for her Caregiving: The Spiritual Journey of Love, Loss and Renewal, makes a strong case that care giving also resides in our souls. Throughout this comprehensive and compassionate but unsentimental resource book, actual caregivers tell their stories, acknowledging their vast range of experiences and emotional reactions alongside a gamut of action plans, checklists, as well as medical and support networking information.
Hospice Care for Children
Edited by Ann Armstrong-Daily and Sarah Zarbock
Written for those involved in the care of dying children, this book describes different models of care, the developmental stages of children's understandings of death, the crucial aspects of pain and symptom control and psychological distress. The book outlines Children's Hospice International's Program for All-Inclusive Care for Children and their Families. Particular attention is given to the necessary emotional support for staff, grieving parents and surviving siblings.
NIJH Jewish Hospice Manual
This manual is intended for non-Jewish hospice professionals and volunteers, and also Jewish personnel who do not have a clear sense about what different Jewish religious needs are.
It speaks for all Jews, on the entire spectrum. It will contain definitive, short pieces on the variety of Jewish beliefs from centrist orthodox to Hasidic to conservative to reform to secular to the yeshiva world and to Reconstructionists.
Behoref Hayamim In the Winter Life: A Values Based Jewish Guide For Decision Making at the End of Life
Reconstructionist Rabbinical College, Center for Jewish Ethics
A Time to Mourn, a Time to Comfort: A Guide to Jewish Bereavement (The Art of Jewish Living)
By Ron Wolfson and David J. Wolpe
From the foreword:
A guide to meeting the needs of those who mourn and those who seek to provide comfort in times of sadness. While this book is written from a laypersons point of view, it also includes the specifics for funeral preparations and practical guidance for preparing the home and family to sit Shiva. Advice is given for attending a Jewish funeral, how to help during Shiva, what to say to the mourners, and what to write in a condolence letter. Special sections deal with specific situations of modern life, including helping young children grieve and understand Shiva, deaths from AIDS, and mourning the death of an infant or child.
A Guide to Life: Jewish Laws and Customs of Mourning
By Rabbi Tzvi Rabinowicz
A comprehensive guide that covers all Jewish mourning rituals including visiting the sick, the period of mourning, the yahrzeit and words of comfort.
Handbook for Long-Distance Caregivers
By Bob Rosenblatt and Carol Van Steenberg, MSS
A publication provided by the Family Caregiver Alliance, this is a 20 page handbook that covers a range of topics related to long distance caregiving.