Truly caring for a person at the end of life requires conversations — about love and legacy, about bestowing and receiving blessings, about choosing life versus fighting death.
I am a well-educated man, a rabbi trained and experienced in comforting individuals on their sickbeds. My five younger brothers have equally good educations. Yet when our mother was diagnosed with late stage pancreatic cancer five years ago and told she had 12 weeks to live, neither my family nor I was prepared.
We listened to the oncologist give us survival statistics, chemotherapy protocols, and medical options. Disease was to be fought and hospice perceived as giving up.
Within days of her first treatment, she weakened dramatically while suffering terrible indignities from the chemo’s side effects. It damaged her brain; destroyed her insides, made her voice barely audible and took away any last shred of control she had over her life. She wasn’t really with us any longer and died in a most horrible way — though her family was at her bedside, showering love we hoped she could feel. There was no hospice until four days before she died … one day more than the national average for hospice use.
In my mother’s dying, she gave us the blessing to find our own voices and redefine what it means to choose life as we die. We realized that in fighting for more time — the standard medical approach — we wasted the time we did have. We came to understand that not fighting death takes a ferocious will and much courage and may well be one of the heroic things we can do.
In the five years since, both my father and father-in-law have died in much better circumstances.
When my father’s heart disease worsened, the whole family said, “He’s not dying like Mom.” We brought hospice in much earlier and had the richest last weeks imaginable.
One day, my father was anxious, though he wasn’t afraid to die or in pain. Knowing he believed he was going to see my mother, I got into bed with him and said, “Dad, what are you going to say to Mom when you see her?” He replied, “She will worry about the boys and she’s going to ask me ‘How are they doing?’” Together we went down the list of my brothers one by one and came up with appropriate responses.
The next day he told me, “Yesterday was one of the most intimate days of my life.” He died in my brother David’s arms, peacefully saying the Shema.
When my father-in-law was diagnosed with pancreatic cancer, he underwent chemo combined with remarkable alternative care from my mother-in-law. But we also brought hospice in weeks before his death. The hospice workers dissolved all the fear and pain, allowing my father-in-law to be incredibly present to the very end. On his 80th birthday — six days before he died — we had a party. With a glass of champagne in his hand, as weak as he was, he smiled and said, “I told you I’d make it to 80.”
Knowing he was going to die soon, the family was reluctant to leave. I went into his room and said, “Dad, no one knows how to leave. Can you, like Jacob in the Bible, give each of them a blessing?” Each one of the children and grandchildren went to him and each one came out with tears in their eyes and smiles on their lips.
The next day he said to me, “Yesterday was the best day of my life.” He died five days later. That’s a good death.
For most of human history, there was no way to prolong life. The interval between recognizing you had a life-threatening disease and death was often a matter of days or weeks. Today, medical science has given us incredible capacity to detect, cure and live with disease. Each medical breakthrough gives our culture a sense of immortality and renders obsolete centuries of experience, tradition, and language about death and dying.
It is time to take back dying from the medical, pharmaceutical and political fields, all of whom have a job to do but none of whom advocates for a good death. We need a new cultural conversation. We have to re-imagine what it means to die, and ask: What is the function of medicine? What is a good death? In a culture consumed with the power of “now,” how are we so off at the most important “now” — the end of life? We need a lot more humility in the face of death.
Most of all, hospice care must become normative, natural, and organic to our decision-making. Hospice must be seen as a treatment as aggressive as any chemotherapy.
Fighting fiercely to live includes knowing when not to let go but rather to take hold and live until our last breath…what Jewish wisdom names the divine kiss.
Rabbi Irwin Kula is president of Clal-The National Jewish Center for Learning and Leadership. This article is based on Rabbi Kula’s keynote address at a meeting last spring hosted by The Center for Jewish End of Life Care, a collaboration between Metropolitan Jewish Health System (MJHS) and UJA-Federation of New York.