How We Die

This is what I know about death.

Admitted to a nursing home with a broken hip-dehydration, my ninety-eight-year-old grandmother awoke from a deep slumber, laughing and clapping her hands when my five-year-old daughter played the violin.

A week later she had a stroke and could not swallow.

We wanted to leap in and save her, but all we could do was swab her lips with lanolin as she lay gasping for water, or food or perhaps air.

It took days for her to die.  A staunch Presbyterian, an even stauncher Republican, she had worked in her garden nearly every day of her life.  Her heart and lungs were so strong they would not stop, even when we wanted them to stop.

An African-American colleague, raised by a grandmother in an old house in Oakland, refers to death as “crossing over.”  Her family could barely afford air conditioning, much assisted living or serial emergency room visits.

Beginning in her childhood and continuing through every decade of her adulthood, she ushered more than a dozen of her caretakers and relatives into death, watching, waiting for the doctor’s footsteps, praying, listening to the sounds of the old house creaking.  By her 40s, she was both traumatized and death-wise in a way that I would never be.

I envied her.  She had a spiritual concept of dying, not a medicalized one.

I know from the controversial PBS documentary Lion in the House that physicians will do almost anything to avoid the “d” word with families whose children have end-stage cancer.  They discuss treatment options and wait for the other shoe to drop, a dance which seems to drive their support staff insane.  However kind, these physicians do not seem to think too much of the parents, considering them naive or uneducated — irresponsible, perhaps, if they are poor and overwhelmed.  Certainly they, the parents, know little about death.

I know that cancer kids and their parents keep asking The Question in different ways, to be met by the Stone Wall.  “We have exhausted all of our treatment options.  We can do one more round of chemotherapy if that is what you want, but we don’t expect results.”  Their best shot:  “You should prepare yourselves . . .”

I know that parents of children with cancer seem unwilling or unable to distinguish death by poisoning (chemotherapy) versus death by the cancer itself.  (Turning swollen and blue-green would seem to be a clue, or perhaps cardiac failure).  Physicians deliberately blur the distinction.  Certainly drug companies don’t advertise the fact that cancer patients die from chemotherapy, like it’s a big secret.

Children in a Buddhist village in Thailand know more about death and dying than most Americans.  The Thai do not pack their elderly off to hospitals and assisted living.  Even royalty do not pack their dead into morgues or coolers.  Family members sit with their loved ones as they die.  The bodies are taken to the Buddhist temple for cremation.

A man brought his elderly father to chat with the abbot of a temple in Northeast Thailand.  “Get a doctor!” I wanted to scream as an old man ran through a litany of medical complaints.  “That is how it is,” the abbot responded calmly.  “Life is suffering.”  Together father and son made an offering, “making merit” (tham bun) for the next life.  The monk chanted blessings.  The pair went away, peaceful and accepting.

Meditation is popular with laymen as well as monks in Thailand.  Buddhist doctrine states that life is suffering and suffering is caused by attachment, in particular, attachment (grasping) to the illusion of permanence.  Depending on the teacher’s judgment, meditation subjects may include a Buddha image (peaceful detachment, control of the mind and senses); a lotus (beauty, impermanence); the entire life cycle (birth, youth, sickness, old age, death); or, for the spiritually intrepid, corpses.

The American approach:  “Listen to Dr. Oz.  Eat salmon.  We can delay aging.”

In cultures less modern than ours, shamans or spiritual specialists usher the dying into the next life, offering knowledge and comfort to those who remain.  The only equivalent in American culture, aside from rabbis and priests and ministers, is hospice care.  I have yet to hear a Protestant minister elaborate on the death rattle, however, and hospice can be miserably difficult to access, even when the dying seems commonsense, obvious.

I was with my mother on her penultimate hospitalization for complications of arthritis-staph infection-heart attack.  The doctor stonewalled when she demanded medicine to take the discomfort away.  She was already on more than a dozen medications, interacting who knows how.  The same when my brother panicked over her toe turning black.  Yet even her rheumatologist, a longtime friend, would not sign off on hospice care.

The staff at assisted living quit answering her call light.

An ambulance was called for her final medical event.  Ignoring the DNR, ER personnel treated her aggressively, seeking to avoid legal complication.  Writhing in pain, fading in and out of consciousness — her nails gleaming with polish (a service of assisted living) — my mother’s last night on earth was one of harsh lights, jarring noise and invasive medical procedures which hurt and humiliated her.

She slipped into a coma and died the next morning.

Sherwin B. Nuland’s eloquent How We Die: Life’s Final Chapter (1994) describes death from heart disease, cancer, accidents, etc.  The book won a National Book Award, yet otherwise savvy people in the medical field have not heard of it.  A surgeon and teacher of medical history, Nuland regretfully recalls trying to “save” his brother from an incurable cancer, in a vain attempt to be a hero, subjecting him to futile treatments, marring his last days with pain.

I know from “Engage with Grace” on e-patients.net and The Health Care Blog that the holidays are a good time to have The Talk about preferred ways of dying.  The Talk surely hastened my daughter’s return to college, yet now I know something new about her, and she about me.  And I know that some god-awful percentage of health care costs in America is expended during the last few weeks of life.

The medicalization of death has left Americans in denial, failing our loved ones as well as ourselves.

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Comments

16 Responses to “How We Die”

  1. Thank you for this beautiful post.

    Personally, I love Dr. Andy Weil’s approach — live a long healthy life, and die quickly. There is no disgrace in that and no need to prolong the end of life as we know it, when quality of life has already gone.

    C~

  2. Deborah Bell says:

    My mother died almost exactly a year ago. She was 85, very lively, not what you would expect to see at 85.

    She had been feeling crummy for 2 weeks – went to 4 doctors – dizzy, fever, just unwell. Then she had chest pain and went to the ER and was admitted early Friday morning with heart arrhythmia and had a drain put in for fluid around her heart.

    I flew in Saturday night – just to help out! – and before I could talk to her or see her Sunday morning, she had a massive stroke – couldn’t talk, lucid, lost the swallow reflex… and then they found cancer. Everywhere. Untreatable when combined with the stroke. The stroke was untreatable because she was already on a lot of heparin for fluid around the heart. A nightmare.

    The following Thursday morning her internist (who had missed the diagnosis… but who knows, so she was tired and a little dizzy?…) told my father we could let her die that night from the stroke, assisted with morphine, or she would die from the cancer within a few weeks. We chose the first option.

    It is the first death I have witnessed, and while it wasn’t peaceful, I know she didn’t suffer pain. The cancer death would not have been so peaceful and would have prolonged her suffering. She gasped for breath for 10 hours and then finally stopped breathing.

    It was a terrible week, especially because she couldn’t talk and could just shake her head yes/no to indicate her wishes. I had no closure, but I am glad I was there to help her leave us.

    I think the hospital and medical system needs a good shaking up. But then… given that 8 weeks before her death she was at a reception with my father, me and my brother, happy, lauging… 2 weeks of illness and 1 week of hospital maybe isn’t so bad.

    Thanks, Chris, for this post.

  3. Christine Gray says:

    Cheryl and Deborah, thanks. Deborah, your response says it all.

    I have no wisdom to offer, except that methinks Baby Boomers need to start wising up, thinking it through.

    Best to you.

    Chris

  4. susanne says:

    Great thinking and even kinder advice. However I am not sure that the american psychological make up could tolerate a Buddhist approach. You have to grow up with it. The medical community needs to find a better way.

  5. Barbara Tunstall says:

    I can really relate to your Dr. Oz comment. I sit here at a whopping 54 with my oxygen on, my hearing aids, my prosthetic leg (it has the universe on it..so cool!), and there are TV shows on with everyone so consumed about how old are they really and how do they look and Oh, No! my boob job failed.

    Somehow they do not live in my world.

  6. Christine Gray says:

    Susanne is exactly right.

    I could meditate while I was doing fieldwork, but my job was to get the job done, so to speak.

    What concerns me is the secularization of American culture and the interface of that culture with the medicalization of death. As you can see from The Health Care Blog (thcb) comments this month, some physicians are preparing to re-think palliative care, etc. as part of overall healthcare reform.

    Perhaps the greatest service the Baby Boomers could do the next generation would be to walk into the prairie and say, “It’s a good day to die.”

  7. Denny Ah-Tye says:

    The Eskimo culture had embraced death. The aged did not want to become a burden on the family and when one’s time came to die, the tradition was to journey into the ice and let nature take you. Nowadays, with the advent of Western medicine and its promoting the preserving of life inculcating native traditions, this may no longer be the norm.

  8. SusannahFox says:

    Admiring how Christine Gray inspires people, this time to talk about How We Die http://tinyurl.com/6ddbhr

  9. Alison Woodman says:

    I particularly liked the way a friend managed her father’s death. He died of kidney failure, and in the Jewish tradition, she moved him to the floor, where she made a sort of soft bed and put candles near him. She waited with him as he breathed his last. The men from the congregation included his grandson (then pre-teen) when they came to the house and washed the body. Then she and her two young children went to the funeral home and spent that next night before the funeral beside him also. All three of them. The children understood the solemnity of the occasion and did well with it. The funeral home was not at all pleased! But they shut up and allowed it anyway. Not everyone manages death badly.

    Also, in Bulgaria, it is the duty of the son(s) to wash their father and prepare him for burial. My friend who told me about it said it was the only time she ever knew her father to cry.

  10. Deborah Bell says:

    I think we spend a lot of time thinking we can “beat” death, “fight” cancer – we use war metaphors continually in this area. We call cancer “the beast” that we fight…

    I think we disregard quality of life, by making patients feel guilty for not continuing treatment. I think it does patients a disservice.

    I don’t know what I would do if my cancer came back, but I have thought long and hard about it. I tend to think I would avoid chemo and radiation, maybe have surgery or simply accept it and have a good time before I died. In the moment, I might change my mind. But I have considered it, quite seriously.

    I have seen people weakened and beaten down by the treatments (poison!) they use to kill the cancer cells. I always hope they aren’t doing it to be heroic.

    It’s one thing to continue treatment with the hope of seeing a child grow up, or to know your grandchildren, to be there for some important life event. It’s another to feel that this is the only option and you would be shunned for saying “this is it, I’m going now”, and quietly letting nature take its course.

    My one other thought for now, is that targeted therapies hold a great deal of promise, and maybe – just maybe – cancer treatment will evolve.

  11. [...] At E-Patients.net, Christing Gray shares a thoughtful and  poignant essay about how the medicalization of death in the Western world has left us a culture in which we no longer underst…. [...]

  12. Roni Balestra says:

    I don’t believe nursing homes are the answer to our last days of life either; however with both spouses needing to work for just about every family sibling it is getting more and more impossible to take care of our elderly in our homes or theirs.

    And that is where we are with our mom…three weeks ago she was going into diabetic shock…and was brought to the hospital by ambulance. Now needing 27/4 care, not one of my nine siblings, including myself are able to take her in, not only for the lack of a person being home, but for the cost it would be to accommodate day care. Her house is a mess because of the onset of mild dementia, and although we tried to help her we were unable to keep up with her medical care, housekeeping, along with our own responsibilities to children, homes, spouse, jobs, you name it. So she is in a nursing home, and hopefully, she will gain her strength and be able to live in an assisted living environment. And I believe my mom is accepting that, since she can no longer take care of herself and her home.

    So, in hopes of avoiding the dilemma of the above scenario, I think the death topic should be much more accessible for families to discuss and we should not be afraid of it. If a person is ready to die, we should have some system built in our medical care facilities to guide us. My mother talked about dying for a long time, but none of us took here seriously, maybe she was readier than we were to let her go.

    I am for less suffering for our loved ones with a peaceful meaning to the end of ones lives whatever age they are. There has got to be a better way. I think the Buddhist doctrine for accepting death is quite healthy. Why can’t we filtrate that into our culture here in America in our Medical and Nursing home facilities.

  13. Carol says:

    I watched my mother struggle the last few months of her life. She had been a nurse who had cared for m many terminal patients back before the day of real home health care. Since she had surgery for cancer twice, she was reasonable sure that she had cancer again when her health failed. She had told all of us that she did not want any heroic efforts,refused a feeding tube when she could no longer eat, and pulled out the fluid IV three times before she finally told them “no more”. She passed peacefully in her sleep, but not before a long lingering slow death as her heart and lungs kept plugging along long after she was ready to go. Thank heavens Hospice kept her as comfortable as possible. I believe in end of life counseling and frank talks with family long before they have to make hard choices unadvised.

  14. Carol says:

    I watched my mother struggle the last few months of her life. She had been a nurse who had cared for many terminal patients back before the day of real home health care. Since she had surgery for cancer twice, she was reasonable sure that she had cancer again when her health failed. She had told all of us that she did not want any heroic efforts,refused a feeding tube when she could no longer eat, and pulled out the fluid IV three times before she finally told them “no more”. She passed peacefully in her sleep, but not before a long lingering slow death as her heart and lungs kept plugging along long after she was ready to go. Thank heavens Hospice kept her as comfortable as possible. I believe in end of life counseling and frank talks with family long before they have to make hard choices unadvised.

  15. Christine says:

    People fight their way out of life the same way they fight to be born. It can be a long and frightening process. Hospice folks are the guardian angels in our culture. Other cultures have shamans and priests and other spiritual death specialists. Our culture has isolated and medicalized the process of dying that we are doubly shocked by death up close. We avoid it, and we can.

    It is irresponsible NOT to have end of life talks with loved ones, which is why the Republican attacks on this portion of the insurance reform bill are so immoral. If you have to chose an issue to distort to protect corporate profits, try another one.

  16. Vernell Kohel says:

    Good day I appreciated your post. I think that it is important when talking about diabetes to at least point out natural therapies that have been shown to be effective in managing high blood sugar. Numerous natural herbs can be including in a diabetics treatment that can help maintain a healthy glucose level.

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