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 who was trained and has experience in comforting individuals on their sickbeds.? My five younger brothers, also have good educations, some of us have multiple degrees.? Yet when my 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 who gave us survival statistics, chemotherapy protocol, and medical options.? Disease was to be fought and hospice was perceived as giving up to the act of dying.
Within a week or so of her first treatment, she weakened dramatically while suffering the terrible indignities of the side effects of chemo. But heeding the oncologist’s advice, with a family shocked by the suddenness of life upended and dropped into a foreign medical culture with its own language, beliefs, and norms, my mother “decided” to undergo a second round of chemo. The chemo damaged her brain; it 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 over the last few weeks died in a most horrible way – though her family was at her bedside, present and showering love we hope she could feel. There was no hospice until four days before she died… one day more than the national average for hospice use.
But 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 – standard medicine sacrifices quality of life now for a chance of better life later – we wasted the time we did have. We came to understand that not fighting death takes as ferocious a will and as much courage as fighting death and may well be one of the heroic things we can do.
In five years since, both my father and father-in-law have passed 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 weeks earlier and with their doctors, nurses, and social workers – angels of life – had the richest last weeks of the life of a loved one imaginable.?? A week before my father died, I could tell he 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? And he said, “She is going to be worried about the boys and she’s going to ask me ‘How are they doing?’ “? Obviously this was his worry.? So together we went down the list of my brothers one by one – the bachelor brother he worried wouldn’t get married.? I said, he’s dating a wonderful girl, don’t worry, they’ll get married. (And within the year, they did and God willing in the next few months his wife is having a baby!) The brother he worried works too hard.? I said, it’s ok; he is actually coming home earlier these days. And so on.
The next day, I came into his room and he said to me, “Yesterday was one of the most intimate days of my life.”? And 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 the most remarkable alternative care from my mother-in-law but we also brought hospice in weeks before his death. The hospice workers literally dissolved all the fear revolving around death as well as the pain allowing my father-in-law to be incredibly present to the very end. Six days before he died?- on his 80th birthday?- we had a party and 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.”
But the family who was there that Sunday afternoon knew from the hospice workers?- who combine medical know how with profound wisdom about death – that he was going to die in the coming days and didn’t know how to leave the house the last time they would see him.? Hospice had encouraged us to have any and all conversations.? So I went into his room and said, “Dad, no one knows how to leave. Can you, like Jacob in the Bible, just give each of them a blessing?” Each one of the children and grandchildren went into him and each one came out with tears in their eyes and smiles on their lips.
The day after that he said to me, “Yesterday was the best day of my life.”? He died four 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. George Washington developed a throat infection and died the next evening!? 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 has rendered obsolete centuries of experience, tradition, and language about death and dying.
It is time to take back dying from the medical, pharmaceutical, and political industries all of whom have a job to do but none of whom have the strong interest in advocating for a good death. We need a new cultural conversation: We have to re-imagine what it means to die.? How we want to die? What is the function of medicine? What is a good death? How in a culture consumed with living for and the power of Now are we so off at one of the most important Now’s in our life – the end of life? Of course there is no one size fits all when it comes to dying. But if our public conversation is limited to Kevorkian on the one side and Terry Schiavo on the other, fighting to the bitter end or surrendering, we will allow ideology, fear and the marketplace rather than ourselves, to make one of the most important choices we will ever make in our life.
We need a lot more humility in the face of death.
Ask anyone how he or she wants to die and they’ll say; “In my sleep,” yet no one actually gets to make that choice.? What they really mean is “I don’t want pain. I don’t want to die alone. I want to die with dignity with a sense of awareness that I won’t be forgotten and that my work is done.”? It means fully living to the end of life, rather than dying at the end of life.? Those are choices that we can – and must – give to all.
Hospice care must become normative, natural, and organic to our end of life decision-making. Hospice must be seen as aggressive a treatment as any chemotherapy. Fighting fiercely to live must include knowing when not to let go but rather to take hold and die living. Death as the enemy to be fought is only a partial truth as the battle is not with death but to have as meaningful and flourishing life until our last breath…what Jewish wisdom names the divine kiss.
Rabbi Irwin Kula is a 7th generation rabbi and a disruptive spiritual innovator. A rogue thinker, author of the award-winning book, Yearnings: Embracing the Sacred Messiness of Life, and President-Emeritus of Clal – The National Jewish Center for Learning and Leadership, he works at the intersection of religion, innovation, and human flourishing. A popular commentator in both new and traditional media, he is co-founder with Craig Hatkoff and the late Professor Clay Christensen of The Disruptor Foundation whose mission is to advance disruptive innovation theory and its application in societal critical domains. He serves as a consultant to a wide range of foundations, organizations, think tanks, and businesses and is on the leadership team of Coburn Ventures, where he offers uncommon inputs on cultural and societal change to institutional investors across sectors and companies worldwide.