Rachel Naomi Remen is clinical professor of family and community medicine at the UCSF School of Medicine and the author of two bestsellers, Kitchen Table Wisdom and My Grandfather's Blessings. A pioneering medical reformer, she is the founder and director of the Institute for the Study of Health and Illness at Commonweal and has been a physician to people with cancer for more than 30 years. She was interviewed by Reform Judaism editor Aron Hirt-Manheimer and managing editor Joy Weinberg.
Joy: A lot of attention has been focused recently on our choices at the time of death. This seems to be such a painful and difficult issue.
Rachel: Yes it is. Every death occurs at the intersection of the needs of many people. Let's just imagine a woman who is dying and her family, a husband and two adult children. Each of these people has their own relationship with this dying woman, each has individual needs for recognition and control, and each needs to resolve different issues in order to complete their own relationship. All of this makes it a different experience, a different death for every member of this family. Perhaps the first daughter has always been her mother's confidante, the one who knew what her mother really thought about things. She may believe she alone knows her mother's wishes and needs to be certain they are carried out. That's different than the needs of the second daughter, who has always been her mother's baby and has been treated as a child. She may want to have everything decided by others. Then there are the needs of the husband, who has always seen himself in charge of his wife and her life. He may want to be in control of the time of his wife's death and the way in which she dies. Each of these people may be hoping for something different in the last days of this woman's life, for a different kind of healing for themselves, and their needs will influence their preferences for the way things will go: where she will die, what the time of her dying will be like, how many technical means will be used to prolong her life, and even when she will die. And people outside the immediate family--friends and relatives, hospice workers and doctors--may also have needs and preferences. So a great many often conflicting needs are present, and in this situation the choices of the person who is dying may become lost.
Aron: Would you say that when it comes to making end-of-life choices, the dying person's decisions should be paramount?
Rachel: Yes. I believe that people who are dying have the right to die by their own values--the values that ultimately define who they are and what they stand for. Sometimes this may be our final gift of love: to act on a decision with which we disagree and simply say, "I did this because the person I loved wanted it."
My mother made a number of decisions in the last days of her life that I myself would not have chosen. At the age of eighty-four she decided to have cardiac by-pass surgery, something I never would have done. But she wanted it. It was so risky a procedure that doctor after doctor after doctor was unwilling to operate. Finally she found a surgeon who said that if she wanted the surgery, he would do the operation.
On the day of her surgery I got to the hospital and discovered that the operation had been moved forward by two hours and I was just in time to kiss her before they took her upstairs. I was quite shaken by this, but my mother was absolutely ready, completely in control and at peace. She said to me, "Oh good! I'm so glad you came before I went upstairs. There's something I want you to know: No matter what happens here, I AM SATISFIED, and you need to do whatever you can to be satisfied as well."
Those were my mother's last lucid words to me. I like to think that being supported in her own choices at this important time helped her to feel this way. But I found a great deal more meaning in her final words. Frankly they changed my life, because underneath them I found a question: "How do I live so that at the end of my life I am satisfied, no matter what?" This question is still like a compass to me....
Aron: What about those times when the values of a family caregiver are diametrically opposed to the values of the dying person? I'll tell you my personal experience. My father and mother both survived the Holocaust. During the last years of my father's life, he could hardly breathe and had to be hooked up to a complicated machine which my mother learned to operate. He begged her and begged her to kill him, but she would answer, "Please don't ask this of me because this is one thing I could never do." As much as it hurt her to witness his suffering, she would not pull the plug. Once, near the end of his life, I asked my father to tell me his life story. I turned on the tape recorder, and he said, "When I wanted to live, they wouldn't let me, and when I wanted to die, they wouldn't let me." That was his view of his life.
Rachel: Of helplessness.
Aron: Yes. But in the end, while alone, I believe he somehow managed to pull his own plug.
Rachel: It seems that your mother discerned what made a life worth living for her, and she wished to act by her own values. To her, life was precious on any terms. Your father also wished to live by his own values, his own sense of what makes a life worth keeping. And as you tell this story, it seems to have had a very beautiful resolution. For a long time your father had defined himself as helpless, but his final act is completely self-determined. It's a statement in and of itself. A reclaiming of personal power, of manhood even, at the very end of his life.
Joy: I think too of the last words my father said to me before he died. My father was a consummate organizer. He repeatedly told me all the details I would need to take care of after he died, and every time he discussed this with me I became so anxiety ridden I would forget everything. He would question me and I would fail the test miserably. So the third time we went through this routine I wrote it all down, typed it up, and came in with the full list so he could feel secure, but nonetheless there were certain details that he was concerned about and one of them had to do with his car. He wanted me to get rid of my beat-up car and drive his good car instead, and I wasn't ready to do it. Well one day, he was very weak and he motioned to the aide that he wanted to sit up to say something, so we sat him up and he said, "Joy, take care of the car." And I said, "Dad, I've got the papers now to put it in my name," and I detailed the other ways I had put his papers in order. Then he looked at me and nodded and we laid him back down. A couple of hours later he died. And I felt at peace that I had given him the peace he needed to let go.
Rachel: Joy, when people are dying, what they say often has a symbolic meaning as well as an ordinary everyday meaning. So a car is a way of moving through the world, it's a vehicle, and your father may be trying to leave you his way of moving through the world, whatever that means. That could mean his values, what he stood for, what his life represented. It may have nothing to do with a car. The happenings around a death are filled with symbolism very much like the happenings in the dream world. So when he says to you, "Take care of the car," the car may be a symbol of taking his life and moving it forward through your life. He's telling you, "If I can't be here to help you, I can give you my vehicle, my values, what my life has stood for...take them and use them. "
Joy: Does every death have meaning?
Yes I think that it does. Every death has meaning, and it has a different meaning for each person who is touched by it. Finding the personal meaning in someone's death may transform the experience of it. In my work, I have heard many people express gratitude for the important insights they have gained about themselves and others, and the depth and richness of the time when someone close to them dies. Despite the pain, even despite great loss, the experience may evolve into an experience of gratitude. So I encourage people to be as fully present as they can, to pay attention to what is said and not said, and to listen to themselves and to the dying person carefully, not only with the mind but with the heart.
Aron: In your reactions to both of our stories, you've given us comfort because you're able to see these experiences in a new light.
Rachel: Finding meaning may require taking the largest possible view of things...even seeing things with new eyes. I feel that your father, through his final action, was able to heal a painful issue. You might go even further with this. He was not married to a woman who could pull the plug for him. He was married to the perfect woman who, through being true to herself, enabled him to take control of his life at its very end. And perhaps that's how we serve one another, not necessarily through our deliberate choices but just through being the people we are.
Aron: It's amost as if there are forces at work that are beyond our awareness.
Rachel: Yes. There are mysteries beyond our human capabilities to understand or even to see. We need to accept this. And we also have to accept that our lives may serve a larger purpose that we may never understand. Often we serve others in ways we don't even realize, but we serve perfectly anyway. It's so important to remember to wonder about the deeper meanings of our lives, and to remain open to the possibility of change. When someone is dying, we're in the presence of something unknowable and holy. People may take off their masks and speak a truth they've never said before. In one of my books I tell the story of the daughter of an architect who was estranged from her father, this critical, judgmental, difficult man. The hospice people suggested she fly out to see him because he had less than a day to live. She almost didn't go, but at the last minute she decided to fly to his home and there she met a completely different person than the father she'd known. She spent twenty-four amazing hours talking with him about what's important, what matters, and finally she said to him, "Dad, of all the things that you've done in this world, which is the one thing that you're leaving behind you that you feel makes your life worthwhile?" She was certain he would point to one of his world-famous, award-winning buildings. But without a second's hesitation, he looked her in the eye and said, "You, of course."
Death is often a time when we discover things. Things about people. Things about life. We are not a culture that spends a great deal of time reflecting on things. We are very busy people who often act without stopping to take the time to reflect on our values or even know what they are. Perhaps this is why first-order questions such as "What matters?," "What is really important to me?," or even "What is a human being?" tend to come to mind only when our busy lives are interrupted by some crisis event...like the death of someone we love.
Joy: How do you go about guiding people in thinking about these issues?
Rachel: I listen more than guide. It's my belief that these situations naturally raise deep questions in people, questions they may not have considered before. So I may ask, "What questions come up for you in the setting of your father's dying?" "What dreams have you had?" "What do you wonder about?" I encourage people to reflect, to go deeper. It's not my job to provide answers, and indeed no human being may have answers, but we can wonder together because wondering together enriches the quality of life. I listen to people's stories. And just as I asked you, I ask them: "What if? What if things were different than the way you have seen them in the past?"
Aron: Do you encourage people to write a living will?
In today's world a living will is of great importance, and because people change it should be kept current year by year. And yet, having been in such painful situations many times, I sometimes find that a written living will is not completely adequate. I often suggest that people talk honestly and openly to those who will carry out their choices. I also suggest that they make an audiotape in which they speak directly to their family and friends, the people who love them and will have to make the hard choices if they are incapacitated. I encourage them to speak about their wishes, to explain why these things are important to them, to express their understanding that carrying out these wishes will be difficult, and to express their gratitude to those who will have to do these difficult things. To thank them for doing these things as a final gift of love.
Just imagine having to decide when someone you love most dearly will die. Your doctor has come and said, "We feel there's nothing more we can do and it may be time to pull the plug." Imagine the difference between having a written form that's been filled out by your mother and having your mother there with you on tape, hearing her voice telling you her wishes and asking you to carry them out...out of love for her. It's a very different experience. It strengthens those who have to act. It helps them and other family members to find peace in the choices that are being made. And it allows people to go on.
Joy: Do you believe that making decisions about end-of-life issues is more difficult today than in the past?
Rachel: There's a question that I always carry in my mind: Do we act because we can or do we act because we should? I've been a doctor for forty-two years now. In the early days, there was relatively little one could do to prolong a person's physical existence. What we could do technically, medically, was a small fraction of what we can accomplish today. So we accepted a great deal more and we comforted a great deal and we stood together in the face of unchangeable circumstances.
But today we can do technical things that we could only dream about forty-two years ago. Terry Schiavo was kept going for 15 years--that would not have been remotely possible 40 years ago. So the beautiful saying from Deuteronomy, "I put before you this day the choice between life and death, so therefore choose life" has a new and deeper meaning today. It's not so simple any more. What do we mean by life? What about a person who has no brainwaves but whose body is otherwise functioning because of our awesome technical skills and machinery--does this person have life? And even more difficult: Is this person still here because of the will of God or the will of man?
It has been said that our wisdom lags behind our technology by about fifty years. So our capacity to act may outpace our ability to discern whether or not we should act by several generations. In that time lag, in that gap, we still have to make choices and to live with them.
There's something very humbling about these situations that our technology has put us into. We've come to the limits of our human capacities and we're struggling in the dark. I think it would help to acknowledge this. We are now in an area which is a huge stretch for any human being--whether that's a doctor human being or a daughter human being or even a president human being. I'm humbled by the greatness of the challenge. And it gives me a sense of compassion for everyone involved.