2 February

Talking About Death. We Don’t Cry Anymore. How Do We Learn How To Die?

by Jon Katz

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.

16 Comments

  1. Thank you again for an honest and heartfelt post. I am 54 and my husband is 69, and we have an 11 year old daughter, so I can relate to many of the points you made.

  2. I’ve had this same discussion with my son. I , too, have a DNR and my son has my POA.
    My one prayer is that all States fully discuss right-to-die issues and pass the laws that people are asking for. I would rest more easily if I knew that I could call my own shots at the end and have a pill I could swallow when I’m ready.

    1. I so agree with you…it should be our right to make that final decision and to go in a respectable and peaceful way-of our choosing, and when we choose. My biggest fear is having something that renders me incapable of making the decision, but thankfully my medical wishes (DNR in place, Living Will, etc.) are known, and my (sister) POA knows as well-no heroic efforts, not artificial means, etc.-but where do we get the magic pill? Hospice is as close as we can get until the laws get changed/passed to give us other options. Medically assisted death should be a right if we choose it. Being a pretty fit 71 yr old and a widow, being alone makes it even more daunting, but I pray we can find a way!

  3. I really LOVE this piece. We are a death-denying, grief-illiterate society. My husband is 76 and I am 73, we are both relatively healthy and look after ourselves. We have had many conversations about death and dying, the practical, emotional and spiritual considerations and we agree with you and Maria. I have a binder that contains our wills, POA, final wishes, Finacial stuff and so much more. It’s all in one place. I have even filled in the top portion of our Death Certificates as they require our parents’ names and places of birth. In Canada, we have Medical Assistance in Dying (MAiD) and we are both prepared to consider that. I have read Being Mortal several times and think you would enjoy When Breath Becomes Air by Paul Kalanithi. Please write more in the future about this topic and thank you.

  4. This is just wonderful. I was there for my mother in her last days. She was so depressed. When she was no longer communicating the hospice worker told me to tell her to let go. I did, and within a couple of minutes she passed. She died in her apartment which was a good thing. But I can’t say the situation doesn’t haunt me. In many families there seems to be one caregiver of parents. It was me. I have all the necessary paperwork for my death and I have health problems including MS. I don’t want to linger. Yes, there should be a pill one can swallow when they are ready.

  5. This is a timely, insightful, and even lyrical post, thank you. My own POLST form (in NY State it’s called a MOLST) is hanging on the fridge with a copy in my knapsack and another in my permanent electronic medical record and another in the binder that I carry to medical procedures. The neighbors are briefed too. It’s good to have a plan B.

  6. What I want most of all is to know what my loved ones want (in detail) when they are near death and what I can do for them and to have started talking about it early in life, in the late 20s for loved family members.

    And vice versa: they know what I want.

    There would be less guilt more contentment.

  7. Thank you for the thoughtful and intimate sharing of your conversations with Maria, doctors, and yourself! I am 70 and have begun talking about the end of life, which is guaranteed as soon as we are born.
    Unfortunately our culture tries to deny death rather than embrace it.
    Reading your piece I thought about my parents and their deaths and the mystery of it. My mom died as she wished. Instantly from a massive heart attack, relaxing in her easy chair at home after enjoying a snack and a little wine with Dad. She was 77 and they had just celebrated 55 years of marriage.
    Dad’s death was different but not prolonged. He nodded off and fell head first out of a chair while talking with myself and his second wife. His neck was broken, he had surgery the following morning, and died within 24 hours.
    It was not the peaceful death I had imagined for him, but it was HIS death, not mine.
    All I know is that for sure I will die, and I don’t want to die in pain, after living with chronic pain for more than 40 years. So no, I don’t want to live a lot longer, and I wish I could have help if needed (I was born in Canada but don’t live there).
    I’m grateful for the people, like you and Maria, who are able to talk about death and not deny or resist it’s reality. I feel comforted by that.

  8. Thank you for sharing your journey with life . The legal and medical decisions being made have distracted me from much needed time to reflect on what my heart and soul needs, peace !!! The expense and rules of legal and medical care are challenging…your words reminded me what matters most, more time embracing peace and love that comes from serious soul searching on my part . Your comments were a much needed wake-up call for me, thank you .

  9. I’m finding your piece, and all the responses, so important. I am 71 and my husband is 10 years younger (go me!) so we’re in a little different position, but we are also having the talks about how we’d wish our final days to be addressed. Our fathers have been gone for many/several years, but we have both lost our mothers over the past two years. Both at the age of 93, mine to physical issues after fracturing hips two years in a row, and his to a long decline from dementia. Both moms were so diminished by the end, and it broke our hearts that there was nothing we could do but make them comfortable. My husband and his siblings are in the process of settling his mom’s estate this month, and then we’re off to the attorney to update our wills and all the necessary documents that go with them. We have no children, so our biggest concern is who will be there to care for us as we age…it’s a sobering thought for sure.

  10. How splendid that folks are at last becoming more aware of the passing years in their lives. I am now 96 years upon this earth. Many years ago I made up my mind to be in charge of my life and my death and have not been sorry. It has been a good decision and has relieved me and my dear ones of any obligation or final decision. I have just read “Being Mortal” and heartedly recommend it.

  11. I look at death as my last trip to a new and exciting destination. I have all the necessary documents in a folder and my doctors and friends are aware of my wishes. I have prepaid my burial and the cemetery plot with a headstone is ready except for my death date.
    It angers me when people use the term”passed” instead of “died”. Birth and death are everyone’s book ends and the words are strong and dignified. If people “pass” instead of died” then babies should be “pushed”. Van you imagine singing Happy Pushday to you????

    Great peace thank you.

  12. What a lovely, well written piece. Having lost my amazing husband to ALS I certainly understand your thoughts.

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