I’m 17 years old than Maria, and I have two chronic diseases. I feel good and am busy and engaged, and fulfilled in life.
I expect to live a long time.
But I’m no ostrich. I accept life as it is, not as I wish it to be. Maria is healthy and robust. I imagine she will live a long time in her remarkable life. I’m approaching the end of mine.
You don’t need to be an insurance actuary to assume I am likely to die before she does. In my hospice and Mansion work, I’ve learned some critical lessons about mortality and dying well. It doesn’t just happen. I must think about it, work on it, and prepare for it.
I want Maria to prepare for it; also, it’s something we are doing together. I believe our love will never really die. I’m entering a new and perhaps final chapter in my life, and I dont want to blow it.
In my hospice and elder care work, I’ve learned that the people who deny death die hard, often without dignity or peace of mind, alone and with tubes breathing for them in hospitals or nursing homes. The medical world brags about how long it is keeping us alive. They should be ashamed of how they are doing.
The people who deny death and hide from talking about it often suffer significantly from never getting closure or death’s wonderful and mysterious meaning. As a society, we have pretty much abandoned the dying and left them to overwhelmed family members or overwhelmed and underfunded institutions. Medicine claims to work miracles. It also creates horror stories.
As we try to decide how we will die most, there is little help from our doctors. Our physicians are well-trained to fix what is fixable and never to accept death, no matter how much suffering their patient experiences. Doctors and family members are trained never to let go and to see death as a failure or weakness.
There is always something for them to try, something to make us hope.
Many family members have embraced this failed philosophy. I remember the sons and daughters. I met in hospice who begged their very ill parents to “hang on” and “not be quitters.”
The hospice social workers learned to sit down with their gravely ill and suffering patients, hold their hands, and tell them it was all right to go if they needed to, and within minutes, they would be gone. So many family members I saw could never let go, and everyone suffered for it.
In his compelling book Being Mortal, Dr. Atul Gawande wrote, “death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things.” Doctors have no answers to give people on the edge of life. If the patient’s condition is not fixable, he writes, “the fact that we have had no adequate answers is troubling and has caused callousness, inhumanity, and extraordinary suffering.”
The question for me is not what the doctors think but what I think: when will I let go? When and how can Maria help me let go if the time comes? What will this mean for her? I’ve spent many nights with those thoughts.
My spiritual work has been a Godsend as I approach this issue by turning inward and asking myself what I want. How do I wish to die? It was inside of me that I found the answers. And it is a solitary process; the culture and society around us don’t want to face up and talk about it.
I believe the way I leave the world is perhaps the most important legacy to leave behind.
Families are often the worst well meaning offenders when it comes to facing death. No one ever spoke to them about letting go.
Beyond my selfish interests, there are practical considerations. Our population is aging and dying. Health care for the elderly can keep people alive for decades longer than was possible, even a few years ago. But they often cannot give them lives of meaning and comfort or free of suffering and pain.
We are a greedy capitalist country; with us, everything comes down to money, even death.
The system that keeps the elderly alive is going broke, too much even for the Corporate Nation. I don’t wish to be a part of that. I want to have some perspective on how long I should live and how well.
The people who learn to talk about death with the people they love die well, often very beautifully, with closure and a sense of self and dignity.
It isn’t that dying isn’t sad for them. But the secret of death is that it can be profoundly beautiful, meaningful, and painful. The Corporate Nation promotes and sells the idea of a soft and gentle death. They work day and night on new pills and machines that will miraculously prolong our lives.
Doctors never give up.
But what kind of life are they saving? Gawande says that after working in hospitals with the dying, he isn’t sure what the word “dying” even means anymore. “In the past few years,” he writes, “medical science has rendered centuries of experience, tradition, and language about our mortality obsolete and created a new difficulty for mankind: how to die.”
They are trained only to fix, not to quit.
I can’t change the system, but I still can control how I die and not let that decision fall into the hands of strangers.
Over the past year or two, I’ve brought up the subject of my death and how Maria will live beyond me. Sometimes she cried during these days, and sometimes I do. But we’ve continued the conversation.
Maria lives in reality; she has scrambled for meaning her whole life, and she never runs from things; she is tough, resourceful, and resilient, even as I can see the pain and sorrow in her eyes when the subject comes up. I am fortunate to have a partner who is strong enough and loves me enough to support me in dying the way I wish to die.
I am determined to die well and with dignity and love. I want to leave my wife with as little of the messes I’ve made in life. I’m working hard to clean things up. And I know that she can take care of herself.
I’ve seen her do it.
I’m not always sure what dying well means, but I am sure what it doesn’t mean. There is no hiding, denial, illusions, hospitals, pills, needles, miracle cures, or treatments that will erode the quality of my life and send me off into this horrible morass of suffering, dependence, and loss of control.
I have time to do this right, I expect to be around, but I also understand and have seen that the longer people wait to have these conversations, the more difficult it is to retain control over how it is to leave this world in a meaningful way.
I turned 75 this year, and when I see my doctors now, we talk about how I wish to die. Most men refuse even to consider the talk, blowing me off with jolly cliches about how anything will be possible in a few years, and I’m too young and healthy to think about it.
I fear that’s the problem, not the solution. Doctors are scientists. They believe in the future. Letting go is a failure.
In the past, we didn’t have to deal with this new, out-of-control, insanely expensive dying process.
Not too long ago, says Gawande, people got sick and died in days or weeks. Today, it takes five or six years for people who get sick to die, their comfort and quality of life receding in direct proportion to our ability to keep them alive.
George Washington developed a throat infection at home on December 13, 1799, that killed him the following evening. Imagine how long our hospitals and doctors and machines would keep him alive today.
But that’s the core issue regarding health care – just because we can doesn’t mean we should.
Gawande writes compassionately that “people with serious illness have priorities besides simply prolonging their lives.” Surveys find that their primary concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not burdening others, and achieving a complete life.
“Our system of medical care,” he writes, “has utterly failed to meet this needs, and the cost of this failure is measured in far more than dollars…how can we build a health care system that will help people achieve what’s most important to them at the end of their lives?”
I don’t know if we can build such a system, but I know I won’t be around to see it. My new rationale is this: I don’t want to do it if Governor DeSantis, his new Desantisism, and his many supporters approve of it. I don’t want to be asleep through the process.
So the challenge for me, and every other “woke” person, is to figure out how to do this death thing ourselves.
We can’t expect politicians or doctors to help us, not now.
So what does this mean for me at this time in my life?
Earlier this week, I wrote about a problem I was having with a gum infection. It was thought it would cost up to $6,000 to repair it while keeping the tooth. I told the doctors that I was at a different point in my life. I would no longer spend $6000 on my teeth or one of them; I had to think about our future, Maria’s, and our feelings about growing older.
We would have to find another way. We did. I’m losing the tooth for $333.
“I want to be honest with you,” I told Doctor Gleck, my new Periodontist. “I’m 75, I’m older than my wife, and I won’t leave a huge pile of debt behind me, especially if I’m not looking at decades of life ahead of me. I need to question every medical procedure and cost and not just assume it can or should be fixed.”
I told him my idea of the quality of life now did not include operation after operation or procedures that drained me and made aging much harder.
I’ve benefited from the health care that fixes things – the open heart surgery changed my life, and new orthotic technologies may soon enable me to return to hiking or even going to the gym. But all around me, I see people not much older than me, unable to stand up, move about, enjoy their lives, or live without pain.
Doctors are not going to make quality-of-life decisions for me. The process moves along on its own unless I stop it.
That’s my responsibility. I like the way the Quakers do it. There are no massive operations at an older age and a memorial service that celebrates life, not just mourning its passing.
Dr. Gletz nodded. “I thank you for telling me that,” he said, “I think it’s very responsible of you.”
This is a conversation I will be having with each of my doctors now and forever into the future. I would be very reluctant to accept extensive heart surgery or treatment for incurable cancer. I am not afraid of dying. I am so scared of living poorly.
I’m entering a new chapter in my life, and I want to be thoughtful and careful about it. The good news about death is that I can end my life with empathy, compassion, and dignity for myself and the people I love.
I’m telling my doctors that treatment for me is no longer automatic at any price. Each illness or problem will need to be carefully considered. Despite my chronic diseases, I am conscious of being both happy and healthy. If I feel that way, I will continue this cycle of examinations, tests, and medications.
I don’t know what the point is where I will stop; it depends on the circumstances. The doctors have all been good about this and praised me for thinking ahead and being honest.
I tell them I learned many lessons from my life with dogs. Of all things, I am proudest that I never permitted one to suffer one day more than necessary to keep them with me. I intend to do the same thing. I have the DNR, etc., and Maria has power of attorney over me should I get very sick. I do not wish to be kept alive by any means for as long as possible.
I want to go sitting up, at least.
Maria knows that and feels the same way about herself and me.
So we enter this new chapter together. It is not a dreadful thing; it is a beautiful thing as well as a sad thing.
I have years, I am told, to work it out, think it through, and talk about how I wish to die. I am blessed to have a partner who will have this conversation with me. This morning, we talked about it as we drove into town together.
Maria teared up a bit and said, “I feel sad.”
“I know,” I said. “Me too. Think how awful it would be if you didn’t care about this…Think how beautiful it is that you do.”
I asked her to read this piece this afternoon, and she did. Her eyes teared up. Maria is not afraid to cry; it is sometimes her way of talking. I love her for it.
It’s okay to cry, I tell myself. It just means I am human.