Only Three Ways To Die

nursing home

Photo: DerrickT

“The absolute truth, Dr. Lickerman?” Emily (not her real name) said to me, tears sliding down her red, swollen cheeks.  “It was a relief.”

She wasn’t referring to being fired from a job she secretly despised or having a divorce finalized from a husband she no longer loved.  She was describing instead how she felt about the death of her mother.

Her mother had been diagnosed with Alzheimer’s dementia ten years earlier and had finally died after a short seven day stretch of refusing to eat or drink.  Emily had debated whether or not to have a feeding tube placed in her mother’s stomach to keep her alive but ultimately decided doing so would only prolong her death rather than provide more meaningful, quality-filled days of life.

And yet, Emily confessed to me, she now felt horrible guilt, not just for having chosen not to prolong her mother’s life, but for feeling relief at her passing.  She’d known she’d feel both before she made her decision but had made it anyway, thinking it truly the most compassionate thing she could do for her mother, whom she loved, who by then had become bed-bound, non-verbal, and entirely dependent on others for every aspect of her care and survival.

As she talked about all the emotions she was feeling, she fleetingly expressed a wish that the end had come abruptly, perhaps in the form of a heart attack, rather than at the end of ten long years of decline with all it had entailed, both for her mother and herself.  After our discussion, her wish got me thinking about which of the three ways we die is actually best.

SUDDENLY

Death comes to many without warning, as a mid-sentence interruption (sometimes literally).  We’re simply here one minute and gone the next.  Though this seems at first glance a horrible fate, there are some benefits to dying this way, including being able to avoid:

  1. The stirring up of the fear of death.  Most of us live by denying the possibility of death or at least by ignoring it.  This enables us to function without fear that might otherwise significantly reduce the quality of our lives.  How lucky to be able to die without having this fear stirred up at all.
  2. Prolonged physical suffering.  Most people seem to fear this more than death itself.  I’ve certainly seen my share of horrible suffering at the end of life and how it tears patients and their families apart almost more than dying itself.
  3. Anticipatory dread of your death on the part of your family and friends.  The shock of losing a loved one suddenly, especially out of turn, is great.  And yet even when anticipated, the shock is rarely diminished.  How much better for your family to be able to avoid the active anticipation of your death.  People often report anticipating something good is often better and anticipating something bad often worse than the actual experience of either.

Unfortunately, the drawbacks are significant and include:

  1. Important work is often left undone.  Certainly, if you remain vital up until the moment of your death, work will always be left undone, but a sudden death may steal from you a wonderful sense of completeness and closure to which a life fully and well lived entitles you.
  2. Important things are often left unsaid.  The greatest drawback, it seems to me, of an unexpected death.
SLOWLY WHILE AWARE

Unfortunately, many become aware of their impending death months or even years in advance of it.  The drawbacks of dying this way are obvious:

  1. Fear of death often compromises the quality of life remaining.  Many of my dying patients seem to navigate this with aplomb far greater than I expect of myself.  And yet some are absolutely overwhelmed by it, unaided by encouragement, religious beliefs, counseling, or medications.
  2. The loss of ability to care for oneself accompanying many types of terminal illnesses is often embarrassing, humiliating, and depressing.  I’ve had more patients complain about this than almost any other aspect of dying.

There is, however, one great benefit:

  1. Being given the opportunity for closure.  Closure with respect to ongoing projects (personal or work-related), with respect to experiences you still want to have, and most importantly, with respect to relationships you want to repair.
SLOWLY WHILE UNAWARE

More and more people are dying either from or with dementia that prevents them from being aware that they’re terminal.  While at first glance this would seem the worst of the three ways to die, like the other two ways to die, some benefit exists:  the patient him or herself doesn’t usually suffer the emotional trauma or fear that accompanies an impending death.  Many patients are in fact what we describe in the medical world as “pleasantly demented”—often quite blissfully unaware and even happy.  The people who suffer most in this situation are the family members and friends who watch it, frequently finding themselves left with memories of their loved one they don’t want, guilt over how they felt and treated their dying loved one (for a more thorough discussion of this topic see Letter To A Widow), and an inability to come to closure regarding rifts in relationships.

The point here of course is that no one can predict or determine which of the three ways they’ll die.  So if you want to die without regret, you must prepare yourself for all three possibilities.  To do so, ask yourself the following questions:

  1. Are you living fully the life you want to live right now?  If you’re given the chance will you find yourself looking back over your life when its end lies in plain sight and regret the way you spent it?  To me this seems the worst fate possible.  I try to summon up a fear of it daily to combat my fear of taking the risks living my dream life entails.
  2. Do you have a will?  Are instructions in place for someone to conclude all your business if you die suddenly and can’t yourself?
  3. Does someone know all your passwords, projects, obligations, and people to contact upon your death?  Do you, for instance, have a blog an audience will miss (hopefully) when you die?
  4. Does your family know your wishes about heroic measures to be taken or not in case of catastrophic illness?  Living Wills are fine and good but the stark reality is that most physicians never read them, and those who do are often not present when decisions about heroic measures are being made (eg, in the emergency room or ICU).  We in the medical profession invariably turn to family first when patients can’t verbalize their wishes themselves.
  5. Will your dependents be secure without you?  And I don’t mean just financially.  Think creatively about what they may need from you in the future (especially if they’re still young now).  Perhaps letters or even video recordings with words of wisdom, encouragement, or support you’d like to impart in anticipation of future struggles they might have to face without you.
  6. Do the people you love know what you want them to know about you and how you feel about them?  Have you said everything you want them to have heard?  This is perhaps the most critical task to accomplish if you want to die without regret.  So, children, speak to your parents.  Parents, speak to your children.  Brothers talk to sisters and sisters talk to brothers.  It may seem awkward and feel uncomfortable to draw attention to the finite aspect of your lives and the state of your relationships with the ones you love.  You may put it off, thinking there will always be time.  But there’s often not.  So say it now.  Say it today.

Emily told me she’d never come to closure regarding certain aspects of her relationship with her mom.  She’d simply never had the discussion before she’d become demented.  “So I had it with her after,” she said.  She’d told her mom she forgave her for all the mean things she’d ever said to her about her weight, that she loved her, flaws and all, and that she’d make sure her own kids remembered the best about her rather than the worst.  The conversation, Emily told me, had taken place in quiet tones, in her mother’s hospital room, the two of them alone.  Her mother, Emily was certain, had understood none of it.

Next weekA Prescription For The Health Care Crisis

24 comments to Only Three Ways To Die

  • Your suggestions about preparations are good ones. Let’s get ‘em mister! :)

  • liana ellison

    I just want to emphasize how important that last point—#6—is. My mother killed herself after we had an extremely unpleasant conversation; she was 89, I was 59, and we had never talked about our very unhappy relationship. I had just hoped to continue trying to conceal my fury at her, when suddenly that day I snapped.

    Five years have passed and the sorrow I feel at her dying—in that way—is still so deep and unbearable. It is not her death that is so unbearable—it was time for her to go, she was in terrible physical pain and depressed, never having gotten over my father’s death a few years before, and she had always said she wanted to take her own life when “the time came.” While I respected—admired—that completely, what is so very painful is her dying so emotionally alone, with her daughter’s last words being angry ones.

    So…it can get too late, don’t wait for that to happen—try to have some sort of honest talking with this person(s). You never know what might come out of a genuine conversation—though I realize perhaps nothing will…my mother was a very angry, critical person who I was very afraid of—even after decades of therapy—and yet I wish I could have gotten over that fear enough to tell her what I was feeling, because whatever I feared, nothing could be worse than what ended up happening (she left an angry note).

    And parents especially are never gone, even long after they are gone.

    Liana: What a heartbreaking story. The only thing that occurs to me to comment is that, though your mom may have thought long about ending her own life, her timing sounds like it was as impulsive as your own angry words. As critical a person as you say your mother was, I can’t help imagine if she were still alive that she’d feel as you do about what you said to her: that she’d want to take it back, and leave you on better terms. I can’t imagine she’d have wanted you to suffer the added grief of regret that you have all this time (maybe in a moment of impulsive spite, but not for this long). The words you and your mom exchanged were only your last ones. They weren’t your only ones and only have received such emphasis in your mind because no others followed them. They certainly didn’t sum up the lifetime of your relationship, no matter how unhappy it may have been. I sincerely hope you find a way to forgive yourself for them.

    Alex

  • Brendalee

    So many times I have walked into a room to see a patient on feeding tubes and life support, never understanding why the family would put them through day after day with no quality of life left, prolonging their death instead of their life. And I still don’t understand it, even after 25 years. Why do we treat our animals more humanely than we do our loved ones? I have made it perfectly clear, verbally and in writing, what to do and not to do if I reach a time in my life where I can’t make those decisions. It’s my greatest fear that my family won’t abide by my wishes because of their own baggage and guilt and fear.

  • Alex,

    What a thoughtful and important post for all of us.

    Having experienced the deaths of 2 parents & 2 in-laws, I’ve seen all the variations—the sudden, the slow aware, the slow unaware.

    The most difficult of all is the slow unaware.

    Both of my parents had long illnesses. My dad had a major disabling stroke at 69, and he lived through additional strokes and seizures until he was 85.

    My mom’s decline began with mini-strokes, a few falls, bone fractures, ending with vascular dementia and a disabling seizure.

    My father-in-law might have been the lucky one. He passed away within a week of a devastating stroke at the too-young-age of 73. He had survived 2 open heart surgeries and a carotid endarterectomy.

    I know too well about managing parents’ daily affairs, finances, medications, doctor visits, emergency room visits, home care, nursing care, middle-of-the-night phone calls, walkers, wheelchairs, incontinence and all the rest of it.

    It’s heartbreaking, challenging, difficult, and one of the hardest things I’ve ever done.

    Worries about my children were “kid’s stuff” compared to worries about aging parents.

    But, even the difficult slow unaware deaths brought with them beautiful gifts and my greatest lessons when I was finally able to just accept the inevitable, concentrate on giving love & care, and making certain not to martyr myself in the effort.

    I’ve written a lot about my experiences this year—with my mother-in-law’s recent (slow but aware) death from cancer.

    “To be able to die in your own home, alert, awake and comfortable to ‘almost’ the very end is a blessing for all of us. A Final Gift.”‘

    The Good Death. She Did It Her Way. At Home, With Family, Without Pain, In Comfort.

    http://www.happyhealthylonglife.com/happy_healthy_long_life/2009/03/endoflife.html

    Healthy Librarian: Thanks for sharing your link. A wonderfully moving story. We should all be so lucky.

    Alex

  • Julia

    Yours is, without a doubt, the most the worthwhile blog I’ve found. I’m glad you went into writing.

  • Joan

    My sister, brother and I are in the throes of an extended death process with our soon to be 95 year-old mother.

    She has for all of our lives abused us emotionally and mentally. Our childhoods can only be described as cruel. Our adult lives have been tormented by her constant venom.

    Still, we have remained connected and supportive, albeit incapable of genuine warmth. At this point, we know that the only emotion we will feel upon her demise is relief.

    She is fighting to stave off the inevitable, although her days are consumed solely with rage at how poorly life has treated her. Any impartial observer would see her’s as a blessed life; indeed, she is still mobile (despite stage 4 colorectal cancer), financially independent, living with family, and adequately alert to engage in activities).

    This feels like an endless torture.

    I don’t know where on your chart of “Ways to Die” this falls.

    I do know that WE feel that we have suffered enough.

    Joan: What a regrettable situation. Certainly, when someone is as unhappy as your mom sounds, it’s difficult to maintain positive feelings for them, especially if you’ve been on the receiving end of their spite and anger for as long as you describe. Finding a way to forgive them their despicable behavior can seem an impossible task.

    Alex

  • Bick

    Alex,

    Having stumbled across your blog several weeks ago, I have come back each Monday to find your reasoned, thought-provoking posts. And today I intend to share your website with my sister and a friend.

    Thank you.

  • And for the one dying (who are all of us), we must remember that only we can die our own death. So the mental preparation for that should be now. That reckoning can be quite liberating for sentient life. It matters not when death actually comes whether one is aware or not if this has been achieved.

  • I knew a priest; we developed a friendship when I became an adult, visiting one another couple of times a year. Then when he turned 82 he told me this would be the last time he would visit me because it was too much to fly across the country at his age.

    Later, I found out that he had Alzheimer’s dementia. Of course I noticed he repeated himself and sometime spoke to me as though I was a still a little girl, but I thought it is just an old age thing.

    I decide to visit him; people told me it was a waste of money since he wouldn’t remember me. But I told them I had enough memory for the both of us and went anyway. Turned out that he was having a “good day” and he remembered me. We stayed up until the early morning talking. What impressed me the most was that he said he was ready to die. Every night he would pray for God to take him. But would wake up the next day to start all over again. He said life is about preparing for one’s death, and when you live a good life you are ready to die.

    Seven months after our visit, God answered his prayers.

  • I think the last one would best describe how my sister passed on. I remember both the good and the bad points as for me the balanced perspective is the most effective way of remembering someone. Not just for the sake of remembering flaws but remembering that we are relative being capable of chosing which paths to take.

  • Jan

    You might want to check out this DVD at http://beingnotdoing.com. She studied with both Elizabeth Kubler-Ross and Mother Teresa, and the short (41 minutes) and inexpensive ($25) film was very helpful to our family and now to hospice volunteers.

  • Barbara Nagpal

    I, too, stumbled upon your blog several weeks ago and each entry has been so relevant. This particular one struck a chord so deep that I felt compelled to write. Each night I struggle with “ending the day” not wanting to go to sleep because I have witnessed members of my family dying with their songs still in them and I don’t want to be in that group. There is a fear of going to sleep and not waking up to continue all the things that I still want to do and to be witness to my children’s lives (who are 27 and 29). My father, who died 2 years ago, a month shy of 99, was the only one who did what he wanted to do but at the expense of others’ needs and was an abusive person. Amazingly, I was his favorite (of 3) and the “accident” and was born on my sister’s 13th birthday. Everyone “abandoned” him in his later years because his behavior was so reprehensible. I hadn’t seen nor talked to him in 5 years when he left me a message that he would kill me if my children didn’t call him. I took out a restraining order which the local police couldn’t believe was necessary since he was 97! Right before his 99th birthday, I was in a therapy session struggling with a part of me wanting to talk to him before he died to tell him how I forgave him and that there were parts of him that I had always admired. It was after this gut-wrenching therapy session where I attempted to call him and trembled so much that I couldn’t even hold the phone that I learned (through my home voice mail) that the city morgue was holding his body and wanted to know what to do with it. I never got my chance to say what I needed to say and your piece today brings home the necessity of making sure we have all our ducks lined up in a row while we are still capable and viable human beings. My 65th birthday comes with the dawn of this day, August 12, and I am going to reread your entry and do what you have so brilliantly outlined to give me peace and clarity. Thank you for such a cogent article.

    Barbara: Your comment, like Joan’s above, movingly demonstrates how many close family relationships are in need of mending that never are. I’m sure telling your father you forgave him for his reprehensible behavior would have helped bring you even more closure, but it strikes me that you accomplished the most important part in simply forgiving him. And if that experience motivates you to prevent such a rift from ever occurring between you and your own children, or if one does, from allowing it to go unaddressed, then your experience with your father has given you an added gift.

    Alex

  • Deanna

    I, too, enjoy you blog. I can relate to most, but this is the first time I’m responding. I was 42 when my father died at the age of 72. He died after a short illness and I was devastated. We had a wonderful relationship, so there were no words left unsaid.

    Five years later my 16 year-old son was diagnosed with malignant melanoma. Now I truly knew what the word “devastated” meant. He said, “Mom, I don’t want to die.” I said, “Peter, you’re not going to die, we’ll get treatment, and if you die, I’ll die too.” I honestly meant that, because I didn’t think I could survive after losing my child. After many, many surgeries and a bone marrow transplant, he died. The greatest tragedy in life is to outlive your child. It has been 20 years and the hole in my heart has not healed.

    My mother age 95 has always been a thorn in my side, being an angry, selfish person. She wasn’t there for me or my child, but several years later she apologized and I forgave her. She’s in a nursing home and is fairly healthy and seems happy. My last words to her a few days ago were, “I love you mother.” I will never forget her angry words when my son was ill, but I forgave her.

    My sister, on the other hand, was always my best friend until my son passed away. She became verbally abusive and we haven’t had a relationship in 20 years. I told her if she had lost a child, I would hold her in my arms and never let go. How can someone forgive a person when they have never apologized or showed remorse? I just don’t want to stir up those memories. Don’t I owe it to myself to protect myself from people whose behavior is injurious to my well being?

    Deanna: How does one console a mother who’s lost a child? I could point you to some other posts like The Double-Edged Sword Of Attachment, Letter To A Widow and Changing Poison Into Medicine, if you haven’t already read them. But when I think of losing my own 17 month-old son, no amount of encouragement seems like it would have the power to alleviate the pain that would accompany that kind of loss. I can only say how sorry I am to know you lost your son.

    How do you forgive someone who’s shown no remorse? It’s extremely difficult. But maintaining ill will towards them, in my view, harms you more than it does them. Forgiving, also, does not mean forgetting. But your sister is human as well. Who knows (and maybe you do) what motivated her to turn on you just when you needed her support most. Perhaps if you haven’t already you might find reading The True Cause Of Cruelty useful in at least helping you to perceive your sister as someone who suffers (after all, what else but suffering could ultimately explain her reprehensible behavior towards you?). But I do agree sometimes some people are so toxic in their behavior toward us that we must detach from them (hopefully with love) if our attempts to reach them with genuine compassion fail.

    Alex

  • Juli

    Having just experienced the death of my father accompanied by the self centered behavior of my mother, this blog and comments hit home.

    I had the honor of physically caring for my father, although he was unaware of it and would not have wanted me to “see him that way.” His last moments were scary for me, but I also felt blessed to have been there with him and draw comfort in those moments.

    My mother, who is not married to my father, behaved abominably during his brief illness and after his death, and I had some very harsh words to say to her. I am not ready to forgive her, and I’m not even sure I know how to. I’ve always been a believer that time takes care of a lot of misunderstandings in families; I only hope she and I have this time.

    Thank you for your blog. It is thought provoking and I enjoy that.

  • cecilia

    Thank you, Alex, for your suggestions about getting one’s affairs and wishes in order before dying, because none of us knows the time of our death. Too often, thinking that we still have time left, we put this off in the hurry and distractions of our lives.

  • Anthony

    Hi, Alex—I just discovered your blog last week and it has brought a great joy to my life and I thank you for that. There’s a lot of good blogs out there (my favorite being Zen Habits by Leo Babtua) but yours is so beautifully written and really gets to the heart of the human condition. Reading this article in particular really reminds me to live every day like it’s my last. That is very very hard to do especially when you have to be responsible for your finances and you have to be patient about certain things. This upcoming Monday will mark the 1 year anniversary of the suicide of a friend of mine. A lot of things were left unsaid between us. I was so saddened not just by her death but by the way she died, so alone and so cold. However, it was a wake up call to me that life is so precious and so worth living. The small troubles in life you just have to laugh about and shrug off and always be aware of the greater picture in life. To me, dying suddenly would be the worst way to die so I make it a point to live without regret. Keep up the great work, Alex!

    -Anthony

  • There are as many ways to die “slowly while aware” as there are people. However, it would be difficult to think of a finer example than that set in 1993 by the brilliant Slovakian soprano, Lucia Popp.

    Here is her last operatic recording, of Mozart’s “Non Più di Fiore” (No More Flowers) from his final opera, La Clemenza di Tito.

    It is undoubtedly the finest recording ever made of this incomparably beautiful aria. Yet, when Lucia Popp gave us this incredible performance, she was suffering from the incurable brain cancer that would take her life within just a few months. She fully realized what was coming, but chose to spend her remaining time and strength continuing to do what she did best—and, in the process, leaving us this priceless gift.

  • Rhonda

    Alex,
    I got caught up in too many details over the past two weeks and did not get back to your site until today. Thanks so much for sharing the results of your ruminations on end of life decisions. What comes through, in part, is the idea that no matter how much we have worked (meditated) to relinquish control throughout our lives (a lovely Buddhist paradox, I know), at long last we must give over. Thanks again!

  • Steven Markell

    Brilliant! Ram Das, Elizabeth Kubler-Ross, Steven & Ondrea Levine, Marty Rossman, and the rest of the best could not have said it better. THANK YOU.

  • Lil Gluckstern

    I really liked this entry because it blends the practical with the emotional, both of which are so important. I have a friend who said to speak as many of the words that we can while we can. I just checked in with my daughter, and asked if it was okay to get rid of years of cards, she, her sister, and the children have sent me. I live in a small space, and I have to clean up. In passing, but not really, we touch on so many of the things we loved together, the charm of the children, and how much we really love, and worry about each other. I don’t think everything will be said, but there is always a little dust left in the corners. I am not planning on dying really soon, but I’d like to think that we hashed a lot of the “stuff” out while we could.

  • I’ve watched both my parents go through having their parents pass on. One went the slow, long route of extending every possible little day (tracheotomy, lines, etc). The other just went into the hospital and refused any external nutrients. From what I witnessed, the first is the easier way in the sense of an easier choice for the family. The second was definitely the harder to refuse care. But I know the second way led to a death with dignity and the family left without being exhausted by months of watching a loved one suffer wretchedly. Feeding tubes, tracheotomies, etc. did little to extend any quality of life. It only prolonged and allowed the increase in suffering. I can only hope that when it comes time for me, I have the courage to say “enough” and go with dignity.

    Isaac: You and me both.

    Alex

  • VerseZ

    I want to pass on like my mother-in-law. It was so perfect, I couldn’t picture any other way for myself or my loved ones. She suffered with one ailment after another, from diabetes to paralysis of the throat, in a span of 10 years. And in the end, after we brought her home from the hospital leaving her tubes and needles and medicines behind, she hugged me close as she lay there on the bed. No one knows about it. Those minutes, that warmth, that glow on her face knowing she was going Home from home. It was enough to make me smile through my tears. I was, I think, actually happy for her and for myself that I was with her.

    The Azaan for the evening prayers at the mosque had just begun when she died. What could be more perfect for a lady so devoted to God. The entire—and i mean the ENTIRE—family was at her bedside. Thirty or forty people including kids and babies from both her husband’s side (my father-in-law’s brothers and their families), and her sisters and their families too. The room was tiny and crammed tight. But I’ll never forget the look of contentment on her round face. That she was going to Heaven with everyone bidding her goodbye…

    VerseZ: What a wonderful story.

    Alex

  • [...] die. She was afraid but wanted to know. To be prepared for unprepared. I read then this excellent essay by Alex Lickerman. I was strongly influenced by his thinking. I would tell this story and put some [...]

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