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

 

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