As a child of Holocaust survivors, I experienced two dramatically different end-of-life scenarios with my parents. My father’s passing was extremely painful physically, emotionally and spiritually, and while he died 34 years ago, the memories and irreconcilable conditions around his death linger. That was before hospice 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, 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 that knew her. She was the sole survivor of her family – youngest of 11 children and one of 44 grandchildren – plus 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 God.
Life changed with a diagnosis of colon cancer but we learned cancer does not necessarily equal a death sentence. You can live with and manage life-limiting illnesses with the right care, enabling continuity of a meaningful high quality life.
As she weakened, she needed more care but was unwilling to go back to the hospital or continue aggressive treatments. Gently and compassionately, her doctor explained new treatments that could be tried, but also explained the side effects and consequences that could arise.
My mother, as all Holocaust survivors, had already faced unnatural death and survived – at this stage she was not afraid of death – but 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 it 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 already lived my life and have nachas from my children.’
She lived for 10 more months and every day was a blessing. We had hospice in my home and what I initially dreaded, I slowly came to appreciate.
My children, husband, siblings and friends all participated in caring for her. Sure, we questioned and challenged. As children of Holocaust survivors we had an overarching need to protect our mother and it was very unsettling to be told that if anything happens we should not call Hatzolah or my mother’s doctor – just call the hospice nurse. But through it all, hospice provided what was needed when it was needed and surrounded us with support.
Hospice has evolved over the years. For example, it’s no longer required to sign a Do Not Resuscitate 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 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 be a burden to them. Also, 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.
One of the lessons learned was how critical it is that Holocaust survivors’ voices be heard and that the clinicians and caregivers exercise a language of listening because that is how trust is built.
Another was the importance of educating third parties such as social workers and other professional caregivers to facilitate these difficult conversations so care plans can be tailored to Holocaust survivor needs – assuring control over choice, and meeting them where they are religiously and spiritually.
These lessons are incorporated into a guidebook, Caring for Holocaust Survivors with Sensitivity at End of Life, that was developed with funding from MJHS Foundation and Targum Shlishi.
Caring for Holocaust survivors through life’s final journey is an unparalleled gift and inspiring lesson of faith. In hospice there is a great deal of trust placed in 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 knew and loved them.
Toby Weiss is director of cultural sensitivity and Jewish programming, MJHS Hospice and Palliative Care. The Center for Jewish End of Life Care is collaboration between MJHS (mjhs.org) and UJA-Federation of New York (ujafedny.org), dedicated to facilitating conversations about the physical, emotional and spiritual needs of Jewish people affected by life-limiting conditions. This column and other resources, including the guidebook mentioned above, are available through the Center website at www.centerforjewishendoflifecare.org.