Resources by ZARRIETA
- Rabbi Charles Rudansky in Divine Prescription
Watch how Rabbi Charles Rudansky touched the lives of his hospice patients during their journey
- A Hospice Social Worker on Grief and Empathy
A Hospice Social Worker on Grief and Empathy – a hospice social worker gains a new understanding of his clients due to his own experiences dealing with cancer.
- Oliver Sacks: Sabbath
Oliver Sacks: Sabbath is a New York Times article where the author explores his religious roots and comes to a new comfort regarding his religion at the end of his life.
- The Epic Rap Video that Starts the End of Life Conversation
- Hospice: What is it and when is it for you?
Hospice: What is it and when is it for you? Prompted by the death of Bobbi Kristina Brown in hospice, CNN explores the history of hospice, discusses exactly what hospice is and when it should be considered.
- Oliver Sacks: My Periodic Table
Oliver Sacks: My Periodic Table
Oliver Sacks shares his reflections from the five months since he revealed he had metastatic cancer in his Op-Ed, My Own Life.
- Choosing How We Die- New Medicare Proposal
Choosing How We Die- New Medicare Proposal
This opinion piece from The New York Times explores the Centers for Medicare and Medicaid Services July 8th proposed a rule that would reimburse physicians for discussing “advance care planning” — treatment options for the very ill, including do-not-resuscitate orders — with Medicare patients.
- Four Things That Matter Most: Study Guide
Even the most healthy human relationships are imperfect. That’s OK. But it tends to be true that relationships would benefit from mending, tending and nurturing. The Four Things That Matter Most offers thoughtful, poignant stories that demonstrate how relationships can be healed and made richer in a variety of different situations and phases of life. This readers’ guide has been designed for use in classrooms and small group discussions. Questions and exercises are provided to stimulate discussion on how readers might view saying the Four Things. It is hoped that readers will recognize how saying the Four Things can reveal opportunities to forgive, love and grow – individually and together – at any time in the course of relationships and life.
- How to Talk With Your Friends When They Get Sick (and Keep Your Sense of Humor)
How to Talk With Your Friends When They Get Sick (and Keep Your Sense of Humor)– A humorous and “real” conversation about what and what not to say to your sick friend. Podcast with Robert Hawke and Deborah Kimmett
- What is hospice care? video
Video from NHPCO that explores, “what is hospice”?
- Sheryl Sandberg’s reflections at the end of sheloshim
Sheryl Sandberg, COO of Facebook shares her reflections at the end of sheloshim (the first thirty days of mourning) for her husband.
- The Town Where Everyone Talks About Death, an NPR’s Planet Money Podcast
NPR’s Planet Money podcast offers a 7 1/2-minute audio clip focused on a US city (La Crosse, WI) in which 96% of the residents have made some sort of end-of-life plan: The Town Where Everyone Talks About Death
- Give Me Your Hand: Traditional and Practical Guidance on Visiting the Sick
Give Me Your Hand: Traditional and Practical Guidance on Visiting the Sick by Rabbi Stuart Kelman, Jane Handler & Kim Hetherington available for purchase at Amazon
- When Choosing Hospice means Choosing Life by Rabbi Tsurah August
When Choosing Hospice means Choosing Life, 2/5/2014, in Jewish Exponent by Rabbi Tsurah August
- Making Sacred Choices at the End of Life and Making Decisions at the End of Life
Making Sacred Choices at the End of Life and Making Decisions at the End of Life” An Approach from Sacred Jewish Texts by Rabbi Richard Address available for purchase from Jewish Lights Publishing
- Glossary
- Jewish Lights Publishing searchable listing of their publications
Jewish Lights Publishing provides a searchable listing of their publications for purchase. The category “Grief/Healing” lists many titles that explore mourning, memory and ritual at the end of life
- The National Association of Jewish Chaplains
The National Association of Jewish Chaplains offers extensive resources for Jewish spiritual leaders in a variety of health care settings, including links to useful websites, an NAJC journal, and more
- The New Old Age The New York Times Blog: Exploring the intergenerational efforts to care for our aging parents
The New Old Age The New York Times Blog: Exploring the intergenerational efforts to care for our aging parents
- Jewish Sacred Aging: A Jewish community forum dedicated to discussing issues for Boomers and their parents
Jewish Sacred Aging: A Jewish community forum dedicated to discussing issues for Boomers and their parents
- Talking about Dying, by Rabbi David Tetsch
Talking about Dying, 1/1/2004 in Sh’ma, by Rabbi David Tetsch
- A Collection of Jewish Quotes on Visiting the Sick, Sh’ma
A Collection of Jewish Quotes on Visiting the Sick, 3/1/2003, Sh’ma
- Ceremony for Entering a Nursing Home, Rabbi Cary Kozberg
Ceremony for Entering a Nursing Home, Rabbi Cary Kozberg
- Mishkan R’fuah: Where Healing Resides
Mishkan R’fuah: Where Healing Resides, 2013 by the Central Conference of American Rabbis. A compilation of readings and prayers for health-related moments of spiritual need, copies are available for purchase through the CCAR Press website. A kindle edition is available on Amazon
- Facing the End Like a Mensch by Rabbi Janet Marder
Rabbi Janet Marder of Beth Am (in Los Altos Hills, CA) wrote an informative piece titled Facing the End Like a Mensch
- “Jewish Law (Halachah) and Medical Decision-Making,” AJAS Journal on Jewish Aging
- “Jewish Law (Halachah) and Medical Decision-Making,” AJAS Journal on Jewish Aging, Vol, 2m Number 1, Spring 2008
- “Chaplains & Physicians,” by Dr. Jason Mann
“Chaplains & Physicians,” by Dr. Jason Mann, an oncologist and trained chaplain, in the April 2013 newsletter of the National Association of Jewish Chaplains
- “Bridging with the Sacred: Reflections of an MD Chaplain,” by Bruce Feldstein
“Bridging with the Sacred: Reflections of an MD Chaplain,” by Bruce Feldstein, M.D., Chaplain and Founder and Director, The Jewish Chaplaincy at Stanford University School of Medicine in the Division of Family Medicine
- “Reflections on Palliative Care from the Jewish and Islamic Tradition“ by Rabbi Michael Schultz, Kassim Baddarni and Dr. Gil Bar-Sela
“Reflections on Palliative Care from the Jewish and Islamic Tradition“ by Rabbi Michael Schultz, Kassim Baddarni and Dr. Gil Bar-Sela
- “End-of-life: Jewish perspectives” by Rabbi Elliot Dorff
“End-of-life: Jewish perspectives,” The Lancet, Volume 366, Issue 9488, Pages 862 – 865, 3 September 2005 by Rabbi Elliot Dorff
- Medicine’s Growing Spirituality by Laura Landro
Medicine’s Growing Spirituality by Laura Landro in the 12/8/12 edition of the Wall Street Journal. This article addresses the importance of spiritual and emotional support for the clinicians themselves.
- “Chaplains & Physicians”, by Dr. Jason Mann
“Chaplains & Physicians,” by Dr. Jason Mann, an oncologist and trained chaplain, in the April 2013 newsletter of the National Association of Jewish Chaplains
- “Bridging with the Sacred: Reflections of an MD Chaplain”
“Bridging with the Sacred: Reflections of an MD Chaplain,” by Bruce Feldstein, M.D., Chaplain and Founder and Director, The Jewish Chaplaincy at Stanford University School of Medicine in the Division of Family Medicine
- “Increasing Access to Palliative Care for the Orthodox Jewish Community”
“Increasing Access to Palliative Care for the Orthodox Jewish Community,” prepared by MJHS Hospice and Palliative Care with generous support from UJA-Federation of NY
- “Jewish Law (Halachah) and Medical Decision Making: Helping Rabbis and Doctors “LEARN” to Communicate Effectively”
“Jewish Law (Halachah) and Medical Decision Making: Helping Rabbis and Doctors “LEARN” to Communicate Effectively,” written by Yaacov Schwartz and Toby Weiss
- Jewish Ritual, Reality and Response at the End of Life
“Jewish Ritual, Reality and Response at the End of Life,” published by the Institute on Care at the End of Life at the Duke Divinity School, is particularly helpful for non-Jewish medical professionals who are treating Jewish patients. It provides an overview of the religious and cultural beliefs and rituals that may underlie Jewish patients’ decision-making. Prepared by Rabbi Mark A. Popovsky
- Coalition to Transform Advanced Care
Coalition to Transform Advanced Care: Working to promote the health care system that meets the specific needs of individuals facing serious and advanced illnesses
- Center to Advance Palliative Care
Center to Advance Palliative Care: Providing information about palliative care for individuals and families facing serious and life-limiting illnesses
- “Halachic Pathway” and Chayim Aruchim (Center for Culturally Sensitive End of Life Advocacy and Counseling)
“Halachic Pathway” and Chayim Aruchim (Center for Culturally Sensitive End of Life Advocacy and Counseling)
- MJHS Guidebook: Caring for Holocaust Survivors with Sensitivity at the End of Life
To download this resource, please fill out the following:
- MJHS Institute for Innovation in Palliative Care
MJHS Institute for Innovation in Palliative Care: Promoting access to evidence-based, specialist-level palliative care through innovation, scientific inquiry, quality improvement and professional education.
- Initiating Palliative Care Conversations: Lessons from Jewish Bioethics
“Initiating Palliative Care Conversations: Lessons from Jewish Bioethics,” by Rabbi Michael Schultz and Dr. Gil Bar-Sela in the March 11, 2013 Journal of Supportive Oncology
- Grieving a Loss
Grieving a Loss– a resource about grief and for support
- Caregiving: A Special Report
- On March 5, 2014 The Washington Post published “Caregiving: A Special Report,” with articles, videos and resources about the special force of silent heroes caring for America’s aging population. A must read for anyone who is/will/has cared for an older loved one.
- HelpGuide.org
HelpGuide.org– caregiver Resource
- Respite – Taking a Break
Respite – Taking a Break – caregiving support
- Finding Balance
Finding Balance– Caregiver stress and burnout
- Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease
Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease, 2003 by Joanne Koenig Coste
- Caring for a Child with Serious Illness
- Always on Call: When Illness Turns Families into Caregivers
Always on Call: When Illness Turns Families into Caregivers, edited by Carol Levine
- Next Step in Care – For Family Caregivers
- Family Caregiving
- NHPCO/National Hospice and Palliative Care Organization – Caring Connections
- The Halachic Medical Directive for use in New York State
The Halachic Medical Directive for use in New York State
- Chayim Aruchim Medical Directives
- Jewish Medical Directives for Health Care
Jewish Medical Directives for Health Care, approved by the Rabbinical Assembly of the Conservative Movement
- Medical Orders for Life Sustaining Treatment
- New York State Health Care Proxy Law
- “Halachic Pathway” and Chayim Aruchim (Center for Culturally Sensitive End of Life Advocacy and Counseling)
“Halachic Pathway” and Chayim Aruchim (Center for Culturally Sensitive End of Life Advocacy and Counseling)
- Prolonging Life in the Shadow of Death: Where Halacha Guidelines and Medical Expertise Meet
“Prolonging Life in the Shadow of Death: Where Halacha Guidelines and Medical Expertise Meet,” The Jewish Observer, November 2007, written by Rabbi Jay Yaacov Schwartz, LMSW, Toby Weiss, MSOD, Paula Kim, MD, MPH, CHES and Rabbi Charles Rudansky
- Jewish Law (Halachah) and Medical Decision Making,” AJAS Journal on Jewish Aging
- Congregation Rodeph Sholom’s “End of Life Preparation and Consolation: A Jewish Guide to the End of Life
Congregation Rodeph Sholom’s “End of Life” resources, including Preparation and Consolation: A Jewish Guide to the End of Life- this booklet will answer many questions about Jewish traditions and rituals.
- Too Soon to Say Goodbye, by Art Buchwald.
Art Buchwald’s humorous and poignant account of his days in a Washington, DC hospice where against all odds, he got better and lived beyond the 2-3 weeks predicted. For Purchase
- That Your Values Live On- Ethical Wills and How to Prepare Them
That Your Values Live On – Ethical Wills and How to Prepare Them, 1993 by Jack Riemer and Nathaniel Stampfer. Available for purchase at Jewish Lights Publishing.
- Beforef Hayamin: In the Winter of Life: A Values-Based Jewish Guide for Decision-Making at the End of Life
Behoref Hayamim: In the Winter of Life: A Values-Based Jewish Guide for Decision-Making at the End of Life, 2002 by the Reconstructionist Rabbinical College. Copies are available for purchase on the Reconstructionist Press website
- Life Choice Hospice: Understanding hospice from a Jewish point of view (pdf)
- Life Choice Hospice: Understanding hospice from a Jewish point of view (PDF) Review this handbook for an understanding about what Jewish hospice is.
- Curing vs. Healing
- Curing vs. Healing, 3/1/2003 in Sh’ma, by Ellen Schecter
Ms. Schecter takes a personal look at what the differences are between curing and healing.
- Hospice Care and Halacha: End of Life Treatment in the Jewish Tradition
- Hospice Care and Halacha: End of Life Treatment in the Jewish Tradition. March 11, 2012 audio lecture by Rabbi Dr. Edward Reichman
- End of Life Care Planning: How to Have the Talk
http://journeycare.org/wp-content/uploads/2014/05/End-Life-Care_How-to-Have-the-Talk_JourneyCare.pdf
- CLAL’s Embracing Life and Facing Death: A Jewish Guide to Palliative Care
- CLAL’s Embracing Life and Facing Death: A Jewish Guide to Palliative Care
- V’Zeh Piryah: And this is its fruit…
In Being Mortal, bestselling author Atul Gawande tackles the growing challenge of his profession: how medicine can not only improve life but also the process of its ending. He expounds on the subject from the pulpit of a surgeon, author and most importantly, a son. Amy E. Goodman weaves this exploration of aging into a Jewish perspective by invoking the upcoming Parashat Shelach Lecha– with the entire people of Israel on the eastern bank of the Jordan River and poised to enter the land promised to them. She insightfully compares the fear of the unknown and tales of the shlichim of the Negev with the current day harbingers of aging. To read Ms. Goodman’s d’var torah click here.
- My Own Life: Oliver Sacks on Learning He Has Terminal Cancer
“My Own Life,” written by Oliver Sacks, author and a professor of neurology at the New York University School of Medicine. In this article, Oliver Sacks shares his very personal response to learning he has terminal cancer. He writes, “I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight.”
- How Doctors Die: Showing Others the Way
“How Doctors Die: Showing Others the Way,” written by Dan Gorenstein, The New York Times (11/19/2013). This article shares the importance of communicating personal decisions for care in the face of serious illness and the inestimable value of hearing the individual’s voice resonate in the care provided
- Too Little, Too Late For Many New Yorkers Seeking Hospice
NPR and WNYC aired a version of the article, Too Little, Too Late For Many New Yorkers Seeking Hospice, which features MJHS Hospice patient, Sandra Lopez, her beloved, Coco, and MJHS Hospice Brooklyn nurse, Heather Meyerend. Ms. Lopez lived her final days at the MJHS Hospice Inpatient Residence at Menorah.
- To Hope: Hospice Care in Line with Jewish Tradition
“To Hope: Hospice Care in Line with Jewish Tradition,” (1/17/2014) by Rabbi Charles Rudansky, Director of Jewish Clinical Services at MJHS Hospice and Palliative Care
Conversations…
To Hope: Palliative and Hospice Care in Line with Jewish Tradition
By Rabbi Charles Rudansky
“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.”
Susan Sontag, Illness as Metaphor
Those who enter the kingdom of the sick often feel isolated, uncertain and fearful – yet help is available to those who ask and who are open to a deep conversation about hope. As a Rabbi involved in palliative care and hospice, let me tell you how my end of the conversation goes.
First and foremost, I want to understand the person, not the “patient.” I want to hear the story of this person who has “traveled on this earth.” I want to know her strengths and vulnerabilities, his accomplishments and failures, their legacies and fulfillment.
The goal of both palliative care and hospice providers is to take a person “broken” by illness and make them “whole,” a human mind and soul that stays intact through illness, either to better health or, when that is not possible, to a dignified death. (more…)
- Becoming a Family Caregiver: A Search for Identity
Becoming a Family Caregiver: A Search for Identity
Carol Levine
Becoming a family caregiver can mean a gradual assumption of responsibilities, punctuated by episodes of acute illness, falls, lapses in judgment, or other warning signs. Or it can be, as in my case, a catastrophic event that changes everything from Day One. My first Day One began at 8:18 a.m. on January 15, 1990, when my late husband Howard and I were in an automobile accident that left him severely brain-injured and quadriplegic. I walked away with no physical injuries; the psychic shock came later.
A few days after the accident, the neurosurgeon told me that no one had noticed a blocked catheter in my husband’s arm; immediate surgery was required. I felt as though I was watching a TV set with the sound turned off. I could see the neurosurgeon’s gestures but I could not hear a word–a typical response in such a situation, I later learned.
After months in a coma, Howard slowly regained consciousness but he was totally dependent, emotionally volatile, and with a limited short-term memory. My second Day One was the day we left the rehab hospital, when the staff told me, “You’re on your own now!” And so I was.
After several years of struggling to make this cobbled-together arrangement work at home, I began to realize that my plight was not unique—that the health care system was depending on millions of people like me to do the work of nurses, technicians, and aides without training or support. That awareness was my third Day One.
As I began to blend my professional career as a health policy analyst and writer with my personal experiences, I learned that in research and policy arenas I was an “informal” caregiver, that is, someone who isn’t paid and doesn’t really count. What a demeaning term, I thought, as if caregiving is a picnic. I joined the United Hospital Fund in New York City in 1996 to begin to change the system. I am still at it.
One of the people who made a big difference in those early years at the Fund was Gerald Wolpe, Rabbi Emeritus of Har Zion Temple, Penn Valley, PA. Although I knew he was an esteemed spiritual and intellectual leader, our connection was that he too was taking care of a beloved spouse who had suffered a catastrophic event. On April 10, 1986, at 11:05 p.m. (these dates and times become hard-wired into our memories), his wife Elaine had two ruptured brain aneurysms. She had severe speech problems and other complications.
We shared the experience of trying to restore health and vitality to a changed but still precious partner, while feeling utter despair. He described his experience in a book I edited called Always On Call: When Illness Turns Families into Caregivers. At first his congregation rallied around him. Then, he said, “I began to hear disturbing advice. Over and over my congregants would tell me, “Rabbi, be strong, God will be good….Rabbi, you give us strength….All the while I was screaming inside for someone to help me. So it was not only a crisis of practical response, it was a crisis of faith at a time when everyone expected me to be the symbol of unwavering faith.” Being a caregiver, he wrote, “Is a lonely existential challenge.” Sadly, Rabbi Wolpe passed away in 2009. Elaine survives.
Many family members, even those most deeply involved in caregiving, don’t “self-identify” as caregivers. Taking on the role of caregiver seems to but shouldn’t diminish the primary relationship of spouse, daughter, son, or grandchild. But there are good reasons to identify oneself as a family caregiver, including having the right to medical information, being consulted in hospital discharge planning, and finding support in the community.
At the Fund, we have created a Next Step in Care website with a series of free family caregiver guides (in English, Spanish, Chinese, and Russian), including one titled “The First Step in Becoming a Family Caregiver.” http://nextstepincare.org/uploads/File/Guides/Becoming_a_Caregiver/Becoming_a_Caregiver.pdf. It offers practical advice about taking this significant step, including such tips as:
- Learn all about your family member’s condition; don’t be shy about asking physicians – all of them – lots of questions.
- Set limits on what you can do, think how you’ll manage your job and caregiving, and try to continue some of your previous activities. This is not selfish; it is a way to keep caregiving from overwhelming you.
- Review or create legal documents – at the very least, an advance directive and health care proxy.
- Pace yourself for the long term.
My final Day One in this saga occurred when Howard died suddenly on January 1, 2007. I had to find a new identity as a widow and former caregiver. I am still working on that.
Carol Levine directs the Families and Health Care Project at the United Hospital Fund in New York City. She is the editor of Always On Call: When Illness Turns Families into Caregivers (2nd edition, Vanderbilt University Press, 2004) and Living in the Land of Limbo: Fiction and Poetry about Family Caregiving (Vanderbilt University Press, 2014). This article was written for the Center for Jewish End of Life Care (centerforjewishendoflife.org), a collaboration between MJHS (mjhs.org) and UJA-Federation of New York (ujafedny.org.). This article was published in the Jewish Week
- Walking My Mother To The Gate
“Walking My Mother To The Gates”, (published in the Jewish Week 12/12/2014) by Judith Ruskay Rabinor, PhD, clinical psychologist, author, consultant and psychotherapist. Dr. Rabinor is an expert in treating eating and body image disorders and also specializes in working with divorcing families.
Everyone dies. I learned this fact as a child. As I got older, I came to expect I’d losemy parents. Such is the nature of life (and God forbid it be otherwise). But knowingthis information did not prepare me for walking my mother to The Gates.
As a child, I had an elaborate image of the Gates of Heaven. I’m not sure where this image came from or why it persisted. I only know that “walking my mother to The Gates” was the way I thought about and talked about the last stage of my mother’s life.
That last stage was far longer than I’d ever anticipated. It began in 1999 when, at 81-years- old, my energetic, lively mother began to shuffle when she walked. Diagnosed with Parkinson ’s disease, it did not take long before her body, mind and spirit began to deteriorate. Stiff and uncomfortable, she eventually wound up wheelchair-bound, confused, often staring vacantly into space.
We moved her from her apartment into an assisted living residence with round–the-clock aides. Exhausted, depressed and depleted she further deteriorated, succumbing to dementia. All this took place over several long years.
Fast forward to July 2011 when an unexpected fall resulted in a broken leg and a short hospitalization. This was followed by a long stay in a rehab facility where, unfortunately, she could not grasp the physical therapy instructions.
“Your mother is uncooperative,” I was told by a well-meaning physical therapist in her 20’s. I was summoned to “coach” her in her physical therapy sessions, unfortunately, to no avail. Was it fair, I wondered, to pressure a 93-year-old woman with Parkinson’s and dementia to do exercises she continually failed at and label her “uncooperative”?
My mom was by now frustrated, frustrating, confused and exhausted. By now she didn’t want to exercise, eat or take pills. Speech was minimal. Yes, she still “knew” both my brother and me, but clearly her life was miserable. And now, without regaining the ability to stand on her own two feet, she was unable to return to her assisted living residence. Where could we take her? How to find her a new home?
Fortunately for my mom and our family, a “failure to thrive” diagnosis permitted entry to her final home on earth, the MJHS Hospice Zicklin Residence. And it was there, from our first meeting with an incredibly loving, compassionate social worker, that a new conversation began. In her new home, she was no longer “uncooperative.” We were no longer encouraged to energize and “help” an unrealistic recovery process. A new reality was born: we were encouraged to let go and embrace the final stage of life.
The staff was amazingly attentive to both the concrete and the spiritual. On an early visit, one of the staff mentioned, “I notice how much your mom loves music.” This was my introduction to hospice care. In a process wherein the details of dying are honored, my mom’s likes and dislikes were a central focus of her care. Nothing was too small a detail: Do you think she would like another blanket? Is the light too much for her? Staff monitored the temperature in the room, noticed that the TV clicker needed replacing.
Accepting death meant it was no longer necessary to give her medication to pep her up or sleeping pills at night. It was no longer necessary to insist she do physical or occupational therapy or eat or drink when she didn’t want to. We were in a new world where the acceptance of death was a hallmark, my mother’s immediate needs were the focus of her care, and keeping the family in the loop was a new cornerstone.
As time passed, she spoke less but was present, listening. Talking about death with the staff helped me talk about it with her. “You’ve put up a good fight mom, and I’m here with you, till the end,” I’d say. “You’ve been a good mom,” I’d tell her, “You’ve taught me to be one, too.”
Upon reflection: The very word “hospice” is scary to most of us. It makes death a certainty. But hospice is also a blessing. It helped our family face my mother’s death and to help her be comfortable. It relieved me of the pressure of being a cheerleader. It offered me comfort, solace and safety. It helped me walk her to the final Gates.
Judith Ruskay Rabinor, Ph.D. is a clinical psychologist, author, consultant and psychotherapist in New York. The Center for Jewish End of Life Care is collaboration between MJHS and UJA-Federation of New York, dedicated to facilitating conversations about the physical, emotional and spiritual needs of Jewish people affected by life-limiting conditions. This column and other resources are available through the Center website at www.centerforjewishendoflifecare.org.
- Caring for Holocaust Survivors at End of Life
“Caring for Holocaust Survivors at End of Life“, by Toby Weiss, Director of Cultural Sensitivity and Jewish Programming, MJHS Hospice and Palliative Care.
As a child of Holocaust survivors, I experienced two dramatically different end-of-life scenarios with each of my parents. My father’s passing was extremely painful physically, emotionally and spiritually. While he died 34 years ago, the memories and irreconcilable conditions around his death linger. That was before hospice care was readily available in the U.S.
In contrast, my mother’s passing 17 years ago was a life-affirming experience. She received hospice care in my home, surrounded by those she loved. She allowed us to love her and care for her as she had cared for us – with the utmost tenderness and compassion.
Throughout her life, my mother was our rock, our energy source and a beacon of light for all who knew her. She was the sole survivor of her family – the youngest of 11 children and one of 44 grandchildren – and she lost a husband and two babies. Despite the magnitude of her losses, she had zest for living, appreciation for every aspect of life, and a deep, unflinching faith in G-d.
Our lives changed with her diagnosis of colon cancer. As my mother weakened, she needed more care but refused to go back to the hospital or continue aggressive treatments. Gently and compassionately, her doctor explained new treatments options, but also explained their side effects and lasting consequences.
My mother, like all Holocaust Survivors, had already faced unnatural death and survived. At this stage she was not afraid of death. Yet, she didn’t want to suffer or be a burden to others. She wanted to be in peace and enjoy her days with family and those she loved. She said in plain English, “If you tell me you could cure me, I will fight to the last breath. But if not then, I don’t want to be muchered (bothered). Let me live out my days. I have already lived my life and have Nachas from my children.”
My mother lived for ten more months and every day was a blessing. We had hospice care in my home; what I had initially dreaded, I slowly came to appreciate. Sure, we questioned and challenged. As children of Holocaust Survivors, we had an overarching need to protect “Mom.” It was very unsettling to be told that if anything happens, we should not call Hatzolah or my mother’s doctor, but to call the hospice nurse. Throughout those months, however, hospice provided what was needed when it was needed and surrounded us with support.
We learned that cancer does not necessarily equal a death sentence. People can live with and manage life-limiting illnesses with the right care, providing for the continuation of a meaningful, high quality life.
Hospice has evolved over the years. For example, it’s no longer required to sign a Do Not Resuscitate (DNR) order upon admission and a patient’s primary physician can remain involved as a member of the care team.
At MJHS, we understand the special needs of Holocaust Survivors as informed by a survey conducted with four sample populations: Holocaust Survivors, Second Generation Holocaust Survivors, Non-Holocaust Survivors and Non-Holocaust Survivor Second Generation. As with my family’s experience, we found that:
- Holocaust Survivors rely almost entirely on their children (the Second Generation Survivors) for caregiving and decision-making.
- Both Holocaust Survivors and the Second Generation Survivors do not easily access or embrace hospice care.
- While Holocaust Survivors are not afraid of dying, they often do not speak about dying with their children because they do not want to burden them.
- At the same time, Second Generation Holocaust Survivors do not initiate conversations about advance directives or health care wishes with their parents because they don’t want to upset them, essentially creating a conspiracy of silence.
Among the lessons learned is the importance of educating third parties, including social workers and other professional caregivers, to facilitate difficult conversations so care plans are tailored to Holocaust Survivors’ needs. This ensures control over choice and attends to their religious and spiritual needs. By exercising a language of listening, clinicians and caregivers can build the trust necessary to truly hear Holocaust Survivors’ voices.
Such lessons are incorporated in a guidebook, Caring for Holocaust Survivors with Sensitivity at End of Life, developed with funding from MJHS Foundation and Targum Shlishi. An electronic version of this guidebook is available through Center for Jewish End of Life Care .
Caring for Holocaust Survivors through life’s final journey is an unparalleled privilege and inspiring lesson of faith. In hospice care, a great deal of trust is placed in the hands of providers doing the holy work of “healing” at the most vulnerable time in life – even if healing doesn’t lead to physical cure. While we cannot change Survivors’ past, we can offer compassion, dignity and respect to their present – creating support systems that extend to those who know and love them.
This article originally appeared in The Jewish Week 4/3/15
- Lessening the “Illness Burden”
Lessening the “Illness Burden,” (published in The Jewish Week, 5/7/2014) by Dr. Russell K. Portenoy, chief medical officer of MJHS Hospice and Palliative Care.
During the past 50 years, the U.S. has led an international movement in palliative care, dedicated to improving the lives of patients with painful or debilitating illnesses such as heart failure, chronic obstructive lung disease (COPD), cancer, HIV/AIDS, cirrhosis, kidney disease and degenerative nervous system diseases like dementia.
Yet many Americans are either unfamiliar with the term “palliative care” or think it’s only part of end-of-life care.It is important to spread the word that palliative care should be, and often is, integrated into the very beginning of treatment for painful or discomforting illnesses. While palliative care does not cure such illnesses, it enables patients and their families to have a better quality of life from the time of diagnosis forward.
Palliative care is becoming a major component of health care reform because it enhances quality care and reduces the cost of health care.
Palliative care is a model of care — a therapeutic approach — dedicated to reducing “illness burden” and suffering of the patient and the family.
In the U.S., there are two broad types of palliative care. Generalist-level palliative care is a best practice that can be employed by all health professionals. Specialist-level palliative care is provided by professionals — physicians, nurses, social workers and chaplains — with advanced training and skills who work as a team to create a palliative plan of care.
Generalist-level treatments and services can be managed by the primary physician. If problems become complex or difficult to manage, this physician should discuss with the patient a referral to a palliative care specialist.
Palliative care addresses an array of problems divided into eight so-called “domains.” Specialist-level palliative care programs address all of these domains:
n Physical well-being. Treatments relieve pain along with other symptoms or manage other physical problems.
n Psychological well-being. Support is offered to help the patient adapt to the disease or to relieve anxiety, depression or other psychological problems.
n Social well-being. Efforts target the family and help the patient remain connected to others.
n Spiritual well-being. Care helps the patient and family deal with a loss of purpose or meaning as well as with religious concerns.
n Structures and processes of good care. Patients and families are involved in discussing treatment risks and benefits, prognosis and goals as well as decision-making. The system of care may change to provide better services and support consistency of care.
n Cultural aspects of good care. Treatment plans focus on the need to respect cultural values.
n Legal and ethical aspects of good care. Challenging decisions, such as whether to stop a medicine when the benefit is minimal, are examined and informed by knowledge of the law and ethics.
n Care of the imminently dying. If death appears to be soon, the goals may shift to treatments that ensure a comfortable and dignified death, while providing support for the family.
In the U.S., hospice is a benefit provided by Medicare, Medicaid and many private insurance policies. It offers excellent palliative care for individuals with advanced, life-limiting illnesses. Typically, patients are considered for hospice referral when life expectancy is considered to be less than six months. The hospice team usually visits patients in the home or nursing home, and provides comprehensive end-of-life care.
Research studies have shown that palliative care enhances quality of care and reduces overall health care costs by involving patients in making informed decisions about their own care.
Today, most hospitals have palliative care programs. In the coming decade, community-based palliative care programs, such as those developed by New York’s MJHS Hospice and Palliative Care, will take the lead in coordinating with hospital programs and with hospice to benefit patients and families and the broader health care system.
Dr. Russell Portenoy is chief medical officer for MJHS Hospice and Palliative Care, professor of neurology and anesthesiology at the Albert Einstein College of Medicine and editor of Journal of Pain and Symptom Management. He can be reached at [email protected].
- MJHS Institute for Innovation in Palliative Care
Promoting access to evidence-based, specialist-level palliative care through innovation, scientific inquiry, quality improvement and professional education.
- Vayechi: Source Sheet for Text Study
Vayechi ‘He Lived’: A source sheet for Text Study
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