From Karenâs Hospice Journal
Ever since my 2003 ovarian cancer diagnosis, Iâve known that all the decisions I made going forward would be totally up to me. It has been that way since the beginning of our marriage. My husband, John, has always said that decisions about my body are my own. When I had to face the cancer music, I chose chemotherapy, with his blessing and total understanding. It kept me alive for ten years, and weâve never been sorry. Unlike so many other cancer patients, I was fortunate. I tolerated the treatment. Even after several remissions and reentries, I had never been nauseous from the chemicals, but then, at the end of 2012, I noticed I was having a lot of problems. What once kept me alive was now destroying me.
I was not recovering between monthly infusion installments as I used to, and one day I looked down and my fingernails were bleeding. A few days later, they started to turn black and blue and they felt as if Iâd slammed every one of them in some diabolical car door. What is this, some enhanced interrogation technique? âOkay, Karen,â I said to myself. âIf chemo is doing this visibly to your hands, whatâs it doing to your insides? Itâs no wonder your stomach hurts!â One day people will look back on this barbaric chemo treatment and ask, âWhat were we thinking?â
My tipping point came the day after Christmas, when we returned from visiting our old friend Herbert and his family in Connecticut. After a series of mishaps in a pelting snowstorm, we got stuck about fifty yards from our front door. It meant we had to walk the rest of the way uphill to the house. Fatigue piled up, like the snow lining our Vermont driveway. Doggedly following in my husbandâs tracks, I slowly trudged up the hill. I wanted desperately to curl up in the snow. âHypothermiaâplease, just take me!â It was then and there I decided, no more chemo for me. Iâm looking for some quality of life nowâquantity be damned. âI want to get my snowshoes out again.â
But when I told our older son, Joel, about my decision, he said, in a tone I rarely hear from him, âYou made the decision to stop chemotherapy just because you couldnât walk through some snow up to the house?â
That question, with the heavy emphasis on the rising inflection of the final word âhouse,â sums up every family memberâs angst when the one who knows she is dying makes a decision with purpose rather than how it seems: on purpose. The subtext is âYouâre doing this to us! How could you? Why wouldnât you keep on seeing more of those expert âologistsâ? Why not sign up for clinical trials? Surely thereâs something more that can be done.â What is unspoken is âWe love you! We canât let you go!â and âIf you really love us, you wonât give up. You wonât decide to leave!â
But Iâm determined. I will consciously trade the treatment not only for more physical stamina but also for what I hope will be a more wide-awake brain. I want to participate fully in my living until I die. And I want to be conscious enough to grasp some of the finer points of this whole mysterious âdying thing.â
Following infusions, I felt as if I were being pulled into chemo-dementia. I found myself editing a piece of writing, and suddenly I couldnât see the difference between âbreathâ and âbreathe.â Either seemed like a perfectly acceptable word, so my brain stopped caring. This was not a happy place for an editorial mind like mine! And the chemicals accumulating in my system increased the neuropathy in all my fingers and toes so that my body seemed to be dying by inches, from the outer extremities in.
As I slogged through deep snow that post-Christmas night, I moved ever so slowly toward the porch light, which cast a yellow glow across the snow-covered patio. I am home.
Going home. Thatâs how so many have described dying. That is, at least, for the ones who came back and could later articulate and share with others their near-death experiences. âWhy did I return? I liked it there. Why couldnât I stay?â So often the answer was âItâs not your time yet. You have more to do.â
Since that snowy night, Iâve often thought about the question we all ask ourselves from time to time: Whatâs the purpose of all this? I seem to be drawn now to living and dying with purpose. Asking my journal that question in the wee hours of the morning, I write,
Perhaps your purpose now is to help others to be authentic and real. Thatâs the way you can uphold your friends and loved ones. By encouraging real conversation, real dialogue, and to honor and to express, âThis is where I am now and we may be at different spots in this continuum of life. And thatâs okay. Itâs a movable feast. Letâs enjoy it!â The porch light is on!
A Blessed Recognition
The turn toward death is a decision to choose life, to live as fully as possible until the end, and to be an actor in living while dying. We like to call this moment a blessed recognition. Others may call it consciously dying. Itâs choosing to live until we dieâwith the emphasis on living. Taking this turn, then, becomes an authentic journey and a movable feast with unexpected detours and surprising opportunities for giving and receiving love and then giving it all away again. A headline in a recent church newspaper read, âLife Abundant All the Way to the End.â Choosing to participate fully in living toward death can become a grace-filled time, overflowing with new discoveries and love from unexpected sources.
Each individual comes to the moment when it is right to take this turn in their own way. For many, when a treatment no longer works, itâs an opportunity to look for bigger and stronger treatments or additional alternatives. But for Karen, the decision was obvious. The treatment was hurting more than helping. Nothing could change the reality that Karen would die from the illness she had successfully put off for ten years.
Sometimes it is less a choice than a startlingly cold realization that death is near. We simply need to decide how to act in response to what has happened. A sudden, incapacitating illness like a heart attack or a stroke or rapid-onset cancer often means that some decision about continuing treatment will need to be made. Other times, it may be that the medical team has tried one or more experimental procedures without benefit and finally tells the patient and the family that they have exhausted all options. Or it may be that one family member returns home and encourages the rest of the family to decide to âlet Mother die peacefully and without more interventions.â That was what Daniel did.
We Have to Learn What Mom Wants
Herbertâs acquaintance, Daniel
Dorothy, my mom, was fighting cancer. Despite the surgeonâs dire predictions, they scheduled her surgery for November. She was eighty-two. Everyone pretended that she would live to ninety, as planned. So we collected every story we could find of people who had survived what she hadâand there were many.
Mom was scared. Who wouldnât be? She hated what her illness was doing to her, but with great bravery, she continued to fight cancer. By February she couldnât eat or drink. We were all there, beside ourselves, trying to hang on to our positive attitudes in the face of a very poor prognosis.
When I arrived from Boston (and I admit I hadnât seen Mom regularly as the others had), I knew something was wrong. âYou canât do this,â I said to my family. âWe have to begin talking about the reality of what is happening. We have to learn what Mom wants. We canât continue to live in a dream world. We have to let Mom know that we can and will function without her. We must begin to let her know that when she is ready, she can die.â
I guess it was a persuasive speech because everybody began to talk with Mom about her death and tried to figure out how she wanted to die. As a result, we got to read piles of letters from women all around the world for whom Mom had been a role model. She lived long enough to hear from so many people. We were able to cry together, and we grew stronger as a family because our mother had the courage to allow us to walk with her up to the moment of her death. And the funeral in our synagogue was a celebration of Momâs life, lived fully and openly and graciously up to the end.
Honoring Our Choices
The story of Dorothyâs dying is a testimony to the incredibly rich and textured experience that is possible when the person who is gravely ill makes the decision to turn toward death. Dorothy could make that decision because someone in the family was willing to intervene and halt the familyâs fiction of endless treatment. There is, of course, no guarantee in advance that this journey with a loved dying person will be without pain and disappointment and misunderstanding and heartache. But, as with Dorothyâs family, it could be honest, and honesty deepens love.
Our Divine Human Virtue
Faith
Faith is that unseen thing that you hope for; itâs your inner companion when youâre alone. Itâs an unearned gift that reminds you the Divine Source will uphold you long enough for you to accomplish what you set out to do. You are supported now by an assurance that, in spite of how it may seem at times, the world really is a benevolent place with your best interests at heart. When we act in faith, as Dag Hammarskjöld said, âmiracles occur.â
What is the right moment? How will we know when it is time to decide to terminate treatment? If we are anxious about making the wrong decision, we may never choose. In every moment of our lives, we make choicesâto go here or there, to do this or thatâor determine how to hold or frame something. Positively or negatively. Productively or destructively. Do we wish to be filled with love or filled with fear? Itâs always our choice.
Minutes before Irelandâs beloved poet and Nobel laureate Seamus Heaney died at seventy-four, he texted his wife, âNoli Timereâ (Donât be afraid).
Like anyone caught in a death-dealing disease, Karen had her moments of doubt and sadness during the ten years she lived with ovarian cancer, but they didnât last long. âI was too busy,â she said, âand too focused and too preoccupied with other things. I tried not to let cancer define me. I told myself I was more than the disease. And even now, I am still a living person much more than I am a dying person. And I constantly remind myself, âDonât be afraid!ââ
Being free to decide, however, depends in part on the willingness of family and medical practitioners to ascribe to an individual the capacity to be a decider. The dying person is free to exercise their autonomy in deciding and living toward death only if they are perceived to have the competence to decide, particularly by families and physicians. Whether and how people live until they die is partly determined by how much personal authority caregivers encourage them to take.
Two things are true. Life is irrevocable; we cannot give it back or trade it in for a different size once it is given. And choice is also irrevocable; we cannot not decide. And yet the meaning of life and the freedom to choose are shaped by birth and death and are therefore limited. Some would say that the intention of the dying person is not the sole or even primary determinant. So autonomy is not an absolute. We live and die and make choices in the midst of meaningful communities and the constraints of insurance companies and the government. Our freedom to decide is modified by ethnic customs, the cultures we live in, and the families we are a part of. Despite these social factors that form us, we do still have the capacity to make choices. Thatâs what makes us fully human.
Impediments to Deciding
It is not easy to decide to face death head-on. Karenâs son Joel initially thought she needed a better reason than not wanting to trudge through any more snow. Her younger son, Nathan, once asked her whether or not she was a fighter. She said, âNo. I accepted that my body is hosting errant cells, and I donât know why. But I donât fight it. I accept that they are there and Iâve tried, with the help of my terrific medical team, to embrace what is, and I decided to live as long and as comfortably as possible. Two major surgeries later, Iâm still alive, still talking to my body, still asking why the tumor cells keep on growing. But Iâm not âfightingâ them any more than I am now âfightingâ death. Both cancerous and noncancerous cells are a part of me. Living and dying are a part of me. And you know, Dad has said heâll never allow my obituary to read, âShe valiantly fought cancer for ten years.â Instead, heâll write, âShe lived joyously with cancer for ten years.â Do you see the difference?â
This is the way Karen framed her very personal decision to continue or discontinue life-prolonging treatment. Some may choose to do it the way Karen did. Others may not. Individuals with life-threatening illnesses and their families may resist making the decision to suspend treatment even when they know that more treatment may diminish the possibility of living fully while dying. They hope for another, more optimistic, medical opinion or a new magic drug or the possibility of another treatment just around the corner.
Physicians are often the first people blamed for the impulse to postpone death. Most nurses believe that they recognize a patientâs imminent death sooner than most doctors do. As long as death is perceived to be the enemy, medical practitioners feel that they lose when people die. Although this perspective is changing significantlyâparticularly with the advent of palliative careâmedical practitioners are still reluctant to tell patients and their families that death is not just inevitable but imminent. And families like Dorothyâs are reluctant to hear dire predictions from a physician. Instead, they adopt a positive and hopeful attitude, bargaining or negotiating for more time.
The most common impediment to making the decision Karen made is the mistaken perception that if people are told that curative measures are no longer effective, they will give up the hope that humans need to keep living. And so, in order that someone who is irreve...
