Bioethics, Health, recent

Choosing a Good Death

As a doctor working in palliative care, I treat people who have a terminal illness, in a healthcare system that favours more, rather than less, clinical intervention. Of course, when you go to a hospital, you expect investigations and treatments. You expect the right balance to be struck between finding out if something is wrong, and hopefully not having to return for test after test, procedure after procedure, to the point where your ailment takes over your entire life. Medicine’s goal is, after all, to extend life, and patients will often sacrifice life quality today for the chance of gaining time or feeling better later. Healthcare professionals are rightfully trained to treat first and ask questions later.

But what about the last years of life, when, with the benefit of hindsight, too much time appears to have been spent in hospitals and in clinical areas? Opportunities for holidays and weekends away or family dinners are exchanged for the multiple scars of clinical intrusions visible all over a frail body: cuts, bruises, cannulae, tubes. This is something that relatives of patients I have looked after come back to me about, later, after their loved one has died. Well-intentioned over-treatment, that silent epidemic.

I once received a late afternoon phone call to my office. It was the wife of a man we had treated eight years previously. And she had so many questions that had been going round her mind for years. The biggest, however, was how she/we might have kept him out of hospitals more in the last two years of his life. Like many, he hated being an inpatient, and she felt he had been let down. We talked for a long time, without finding solutions, but agreeing on many points.

As a jobbing palliative care doctor, these sorts of questions come up daily on hospital rounds. My patients and their loved ones are often confused about the next steps they should take. Severe fatigue and pain can sometimes add to the burden of decision making, so quite frequently they may defer to their doctor. A patient once admitted that she tended to nod her head by default when speaking to medical professionals; she did not want to appear stupid. But often she struggled to take it all in, and she said she would not be someone to challenge any proposals made by the medics.

I sometimes ask medical, nursing, and art college students to imagine themselves in their dying days, and I task them with commenting on what they see and hear. Many find themselves in a clinical setting although some picture a sunset, a warm beach, friends surrounding them, and an ice cold drink at hand! But how can we move from imagining a good death to actually realising it? The first step is to acknowledge the concept of our mortality, however far away it may appear. Then, perhaps guided by those who have experience in this area, we can talk about our profound wishes and fears.

One of the first steps is to be more comfortable talking about the end of our lives. I sometimes try to bring a different topic, like music, into these conversations. What tune would you want to hear in your final hours? The answers are surprising. Family, friends, loved ones, and healthcare professionals should be drawn into these conversations where possible. But I still see questions like this one shut down very quickly, often by a younger family member: “Oh, don’t talk like that now, you’ll be fine, just keep taking the chemo, Dad.”

Is there an inherent problem with the word “treatment”? It implies something is “being done.” Perhaps it is too closely aligned with the word “cure,” in some people’s vocabulary. But surely, a treatment that alleviates pain or nausea, whilst not curing the underlying condition, remains a treatment nonetheless. Worse still, is the phrase “active treatment.” It usually implies that the alternative is inactive non-treatment, and I can assure you that palliative care doctors and nurses have many active treatments up their sleeves. I can also state categorically that maintaining someone’s mobility, so they can get around without breathlessness, fatigue, pain and/or nausea requires lots of treatment approaches (yes, they all tick my “active” box), that are no less complex than your average course of immunotherapy. And both can work alongside each other, of course.

We spend a lot of time and energy on tests, investigations, and hospital stays in the last year of life. We follow the stats from trials and big pharma, prescribe drugs that have helped some live a few weeks longer, but not others. Perhaps more time should be spent talking about not doing a test or not administering a chemical “treatment” that may in fact lead to deterioration and death more quickly, if unlucky.

Remember the miracle cancer cure that your favourite newspaper promised eight years ago? No? That’s because it did not cure the cancer. Despite the big headline and the myriad cancer patients clutching their copy and asking why they were being denied, it appears trials did not bear out the big claims. There are many false hopes out there that claim to be treatments and cures. Crowdfunding campaigns try to achieve what has yet to be achieved. Some have been shown to be expensive distractions, at best leaving patients and healthcare out of pocket, at worst costing people precious time that they might have spent doing more meaningful things.

Many relatives and carers of patients who have died, tell me that had they known it was the last year, they would have done more to challenge the seemingly endless onslaught of tests, therapy regimens, and hospital visits. They might have avoided that radiotherapy to the brain, for instance, which was followed by weeks of fatigue, nausea, and hair loss. Instead, perhaps they would have spent many more days at home or enjoyed the beautiful autumnal outdoors, filling their lungs with cold, fresh air and feeling alive. But, in the end, they just went with the flow of “what the doctors and nurses ordered.” The conveyor belt of clinical medicine has many allures. Increasingly, I feel people get pressured into it, by well-meaning relatives, friends, and healthcare professionals.

More patients are starting to turn this around, and I know many who have challenged their medical teams, armed with statistics, forms, and information, to have more of a two-way discussion and dialogue about their personal wishes. Good. Topics that you may want to discuss frankly with your family, friends, loved ones, and healthcare professionals if you have a life-limiting illness include what treatments you would accept and which are less acceptable to you, the individual. It’s called advance care planning. In Wales, we have created an information website with explanatory videos about options like Advance Decisions to Reduce Treatment (ADRTs), and advising how you might go about sitting with a healthcare professional to get it all written down and made available on your health records, if you feel strongly about some things.

We can all benefit from hitting the pause button from time to time on the rollercoaster of interventional medicine. For patients and their families, it is very hard to know when to say yes and no, and some have even told me they just do what the doctor says, so as not to seem ungrateful or querulous. Ask some tough questions of your healthcare professionals, but also of yourself. That is a starting point. The Choosing Wisely partnership has set out three questions as part of a Making Choices Together campaign here in Wales: What are my options? What are the benefits and risks? What can I do to help myself?

The second question highlights the unspoken principle that the treatments that are sometimes offered in diseases like advanced cancer, can be so intensive that they may (for some) even be life shortening, compared with the patient opting instead for a conservative quality of life approach. “Doing nothing” is a phrase I dislike in this situation, because there is always a lot of hard work, activity, and care required in providing good symptom control and quality in the last years of life. “Doing without treatment interventions that may make me worse,” is a strategy that can not increase quality, but perhaps also quantity, of life.

 

Mark Taubert is National Strategic Lead for Advance Future Care Planning in Wales. He works as a palliative care physician in a cancer hospital. You can follow him on Twitter @DrMarkTaubert

Photo by Laura Bilger on Unsplash

Comments

  1. I see most responses to this were on the website and have now moved here, but I felt compelled to reply with my two-pence.

    In 2017, I lost my Grandad to Mesothelioma. We were given his diagnosis in January 2017 and told he had around one year. (He died in the November.) Those 11 months gave me much time to think and reflect on life, death and dying. (It is during this time I discovered Jordan Peterson and has what has ultimately led me to this forum, I suppose.)

    Now, watching someone who you love more than anything in the world be slowly consumed by a painful and unforgiving disease is the most gut-wrenching and draining experience I think one could ever feel. More tortuous, I would suggest, than losing someone instantly, say in a car accident. Anyway, it was suggested in the early days that chemotherapy may be an option. My immediate thought on this was “no - what is the point?” which I think was, at least in part, informed by having read Atul Gawande’s book: Being Mortal. Why prolong the life of an 84 year old man by pumping him full of chemicals which would probably have killed him before the disease? In his own words, when he found out he had terminal cancer: “Oh well, I’ve had a good run!”. And I think this is perhaps what the argument comes down to and why I have found so much in Dr Peterson’s words - the onus is on us to live a good life, to do everything within our immediate power to improve something we are not happy with, to change something for the better. The world does not owe us anything and getting hit with the news that someone you love has a terminal illness proves it.

    I am certainly an advocate for treatment when the person is strong enough to handle such treatment and the potential future benefits outweigh the current costs - younger people, specifically. But when it comes to the elderly, how much should we really intervene? Some may want their loved one to cling on and “fight” for what sliver of life remains and some cannot understand why you would “give up”. I would suggest effort should be made to ensure the person is free of pain and in an environment where they want to be - whether that’s at home, hospital, beach, sky-diving…

    Families may disagree with their loved one’s choice, but I think they would do well to remember that their day will come and it is our last right as a cognitive being on this planet, to decide how we wish to leave it.

Continue the discussion in Quillette Circle

Participants

Comments have moved to our forum

39 Comments

  1. Marty says

    And, in the final stages, assisted suicide is a “treatment”, in fact, a cure. It relieves pain and suffering altogether.

    We offer the kindness to our pets, yet recoil at relieving the suffering of our human family.

    To be clear, I am not advocating euthanasia for people. Simply that an opportunity to end your life with dignity and comfort should be available.

    Having said that, I watched my 15 year old nephew die of a brain tumour. His last two weeks were in a vegetative state. Would that we had the wisdom to be sure to do the right thing at the right time.

    • To be clear, I am not advocating euthanasia for people.

      I thought this article was going to be about euthanasia, considering the headline.

      “Euthanasia” means “Good Death” in Greek.

    • David of Kirkland says

      Yes, the human suffering inflicted by others who demand we suffer is bizarre, not to mention the extreme waste of medical resources and money to fund “healthcare” that will not make them healthy again.
      My mother was effectively tortured by the medical system while billing insurance more money than she used in healthcare in all her prior years.

    • The language of doctors needs to change. An excellent example is in Ken Hillmans book ‘A Good Life To The End’..,and similarly good practical tips/questions are suggested in Dr Charlie Corkes book,’Letting Go’. Compassionate Community groups in Australia are actively educating the public towards better death experiences. Planning ahead, having conversations and choice are all very important to empower you BEFORE you get to the hospital and will hopefully make death less traumatic for all involved. See our facebook site.

  2. “Many relatives and carers of patients who have died, [sic] tell me that had they known it was the last year, they would have done more to challenge the seemingly endless onslaught of tests, therapy regimens, and hospital visits. They might have avoided that radiotherapy to the brain, for instance, which was followed by weeks of fatigue, nausea, and hair loss. Instead, perhaps they would have spent many more days at home or enjoyed the beautiful autumnal outdoors, filling their lungs with cold, fresh air and feeling alive. But, in the end, they just went with the flow of “what the doctors and nurses ordered.” The conveyor belt of clinical medicine has many allures. Increasingly, I feel people get pressured into it, by well-meaning relatives, friends, and healthcare professionals.”

    I don’t think people are ‘pressured’ into it so much as the outcome is largely unknowable. Even if the chances of survival are 20%, many people would consider it worth it to suffer the treatment with the hope they will, say, see their grandchildren grow up, or see their children grow up, or have children. The hospital is obligated to try to cure the person even if chances of survival are low. The only time I think patients are ‘pressured’ is if the chances of survival are pretty much nil and they still, say, do the extra round of chemo. Even then I’m not sure the right word is ‘pressured’ as that they are human and can’t avoid hoping. And given that very few outcomes are knowable, it is very understandable people want to do everything they can to avoid death. In the case of a foregone death – eg the death is certain within x months – yes, then there needs to be a rigorous discussion of palliative care. But death is often not foregone; usually it’s very mirky and unknowable at the time; even the examples the author gives aren’t necessarily those cases.

    My mother died of Parkinson’s at age 56, after about a decade of pain and two years of outright terrible suffering I would not wish on my worst enemy. The pain was undertreated – the doctors were afraid she would get ‘addicted,” I kid you not – and toward the end, she couldn’t move; she couldn’t even open her eyes. But she was still there.

    The thing about ‘what -ifs’ – if she had known how she’d suffer the last two years, I doubt she’d have wanted to extend her life – is that it is a what-if. What the author here doesn’t acknowledge is that very often we just do not know what the final year(s) is like. Sure, in retrospect, if it involved suffering and then death, we might have changed things. Although I doubt my mother would have: she wanted to live, period. She had a strong desire to live despite everything.

    But what if instead my mother had been cured? Or her life extended 10 years, say, in time to see her grandchildren grow? Then would I still be in agony about whether she should have lived? So what’s the difference–10 years versus 2? What are the criteria for knowing whether it’s worth not treating or being in agony about treatment? We don’t know. It also varies from person to person.

    This isn’t an experiment; it is simply using anecdotes of foregone situations and in retrospect, knowing they ended in death anyway, saying we should have not treated them. But the thing is, we almost never know, going in, what treatment is effective and what not, and what the chances are, and whether we should apply that to our loved ones or ourselves.

    My point is that it’s a whole lot more complex than simply “our hospitals pressure patients to extend their lives and palliative doctors swoop to the rescue.” I do think palliative care is very important. But it needs to be acknowledged that there is a huge murky area where it’s simply not clear what the right decision is, and either way has negatives and positives, and therefore to look back 8 years as the author’s client does, and beat yourself up for it, is really fruitless. And going in, it also needs to be acknowledged that the advice is not straightforward at all–with the exception of certain fatal illnesses, some patients will be cured with 10% chance of survival, and others will die with 95% of survival. Only in retrospect would we know if it’s been worth it.

    • Fran says

      You have put your finger on the central problem – we really do not know the future: is it possible that one more treatment can give some more good time? The only answer the doctor can give is ‘likely’ or ‘unlikely’. Some of us would choose to proceed even if the answer is ‘unlikely’, because that includes ‘possible’.

      For myself, the loss of mental function would be critical in a decision. However, I recognise that once I have lost mental function, I can no longer make decisions. At this point, good palliative care is what I would hope I would receive.

      Forty years ago, my 89 y/o grandfather in his lucid moments was adamant that he did not want to go back to hospital. My aunt, a nurse, was left with morphine to give him for cardiac pain (he had had a series of heart attacks in addition to dementia). When the next heart attack came, she gave him the morphine and wondered if she should call the ambulance. Instead she held his hand until he died and then called the doctor. I have never ceased to admire her courage. I am not confident that I would not have called for help, and once the ambulance arrived, I can fully understand that the goal would have been to ‘resuscitate’.

      Having worked on research into pain and analgesia all my life, the fear of addicting a person near the end of life to opioids is a puzzle. My father was one of the lucky ones who had fentanyl patches, increased over the last few years of his life from 25 to 100 ug/hour. This had no effect on his intellect and ability to get around. Unfortunately, the physicians where I live think moderate to severe pain warrants a prescription of 30 mg codeine with 300 mg acetaminophen twice daily, and a request for a repeat is treated as evidence of addiction.

      In regard to the ‘epidemic’ of prescription analgesic abuse, the addicts that I have actually seen were all individuals with drug habits predating the painful incident that led to the oxycontin prescription. After receiving this, the socially acceptable excuse for being an opioid addict is the medical prescription, and the doctor can be blamed. The consequence is that doctors are instructed to avoid strong pain medications at all costs by the Canadian Health authorities. Those who suffer most are those who die with pain.

  3. Morgan Foster says

    “Many relatives and carers of patients who have died, tell me that had they known it was the last year, they would have done more to challenge the seemingly endless onslaught of tests, therapy regimens, and hospital visits.”

    In many cases they do know that it’s the last year. The human capacity for denial can be endless.

    There are a few individuals, however, despite the weakness, fatigue and haze of medication are able to see clearly enough past the entreaties of family and medical staff.

    My mother-in-law was such a person. She was also one of the most iron-willed and controlling individuals I had ever known, and no physician on the face of the earth could match her.

    She calculated the speed of the progression of her illness and weighed the cost in suffering of continuing her treatments and when she recognized that allowing her physicians to continue treatment would likely give her no more than a year of bed-ridden pain, she stopped treatment.

    Most people in her place would have given up taking responsibility for their fate, and allowed their physicians to do what they thought was best. They would have allowed family members to make treatment decisions – and what family member would want to be personally responsible for “killing Mom”? They would have refused agency and accepted another year of suffering before death.

    I consider my mother-in-law to have been an inspiring figure in my life, and when I reach the end, she may well be my guide.

  4. John Savage says

    This article fails to address the self-interest of the system in promoting high intensity care in the closing months of life. In Canada’s socialized medical system, some vast proportion of the budget is expended in final months of life. When my parents, now both deceased, were in their final years and months, I was struck by how much pressure the system placed on the family to allow it to intervene. Our family closed ranks and both my parents enjoyed peaceful deaths in their late eighties without excessive tubes and machines. But there was a definite sense of resentment within the system that we did not play by the rules. The state actors wanted to play the lead roles in the final stages of their lives. If more families like ours pushed them away, they would have no work.

    • Morgan Foster says

      @John Savage

      There is no question that hospital administrators put great pressure on medical staff to bring in revenue. A dying patient with good insurance is a cash-cow.

      • Ray Andrews says

        @Morgan Foster

        Except that in Canada almost everyone has exactly the same insurance and the administrator’s job is to keep costs down. Revenue comes only from the government and the government naturally would rather spend the money where it might better signal their virtue — anything to do with the Indians or refugees or the rainbow.

        • David of Kirkland says

          @Ray – If the government provides the insurance and overspends for end of life “treatment,” then they don’t want to spend the money elsewhere. They like it just as it is, centrally planned tyranny, waste, fraud and misery for the dying.

  5. Lightning Rose says

    One big question that ALWAYS needs to be asked before another test, another procedure is this:
    What does this DO for ME? Too often, it serves the doctor’s need to indemnify himself from liability by having that needless and painful test in the file, even redundantly; it serves the financial mandates of his affiliated hospital group, which demands he fulfill a quota for MRI, CT etc. use; and it gets rubber-stamped by Medicare simply because it’s “standard of care.” Hence terminal patients in their 90’s still being sent for mammograms, and other absurdities.

    People will get the medicine they demand. It’s complicated, but it’s also simple. We need to stop looking at medicine as magic distributed by some untouchable priesthood, and take command of our own life process. Right now the system is more exploitative of suffering than palliative. Worse yet, the “care” often causes far more suffering than the actual disease, and for no gain at all.

    • Ray Andrews says

      @Lightning Rose

      “Too often, it serves the doctor’s need to indemnify himself from liability”

      This is surely a huge problem and an absolute drain on resources.

  6. bumble bee says

    Having taken care of an older brother and my father through their end stages of life, palliative care is so important. Luckily we had hospice for an extended period of time, not the last two weeks some have had the misfortune of receiving where it is far too late to prepare and give comfort. Hospice care is not about dying tomorrow, but is about giving support to all involved so when the really hard time come, everyone is prepared and has dealt with the inevitable.

    When my brother was diagnosed with cancer at 43, I would accompany him to his appointments and when I would bring up what kind of time factor we are looking at, I was looked at and treated like I was a monster for asking. The Dr would never give any inkling as to whether my brother was looking at a month, a year. While I understand it is difficult to put a time limit on something like this, it would have been quite beneficial for my brother, his family, friends, to take advantage of the time we had left.

    What I will say about palliative care is that being able to take care of someone you love in their time of diminishment, is one of the most grace filled experiences I have ever encountered. To be able to express the love one has for another, to know that they do not have to face this alone, that they are surrounded by loved ones is one of the most fulfilling experiences. For me, it made the grieving bearable. I did not have the guilt or doubts of not doing enough for them of wishing they new how important they were to me. They both went knowing they were loved.

    I hope the medical profession will reevaluate unneeded procedures, etc. I hope there is enough services like hospice to provide not only the terminal, but those caregivers the support and guidance they need. We all want to do what is best for the one in need, and having a medical professional there to reassure that while death is coming we are still doing our best to provide comfort and support. When my brother was unconscious the day before he died, I was afraid that I was giving him too much/too little morphine for his pain, but thanks to the hospice nurse, he assured me that what I was giving was just right. It allowed me to continue his final moments of care knowing I was doing what was best for him.

    • Gordon Fiala says

      Palliative Care is criminal.
      The detain the elderly against their will and bill them.
      Not to mention that the recipients defecated in the Great Lakes until Jean Crestien put bill in place, and yet we still dump sewage in Lake Superior

      It’s not really treated. Overflow.

      My father locked up his dad and his mom.
      And no one there was glad to be there. The people that were getting paid, said “No, you aren’t going home.”
      Not to mention my friend who broke himself quadding and completely deteriorated while servants wiped his ass while his body contorted in agony.

      • bumble bee says

        Do you understand hospice care? My family members died at home. They were never in the hospital in their final months.

    • Rob says

      Thank you for sharing your story. You seem to have made the best of an awful situation.

  7. IAN says

    My elderly mother has just been starved to death in Queen Alexandra Hospital, Portsmouth, UK, on the instructions of the doctor in charge of her case, Dr Jackie Carter, without my consent and without me even being aware of it until I complained to Dr Carter about the lack of treatment my mother was being given.

    When I asked for a feeding tube Dr Carter falsely claimed my mum was dying – completely untrue : she was her usual self when she was admitted and had been eating normally at home. She wasn’t even unwell when she went in – she was only admitted for observations.

    Dr Carter then told me directly that she was refusing to allow my mum a feeding tube because her “Quality of Life” was too low, and that she had the right to make that decision and I had no say in the matter.

    Mum was 93, frail, and in long term decline and not communicating much, but she was calm and content and being kept comfortable at home peacefully living out whatever time she had left, and that was taken away from her by an arrogant professional who decided that her life should be ended.

    Mum was in good physical health for her age – all her functions were normal and she wasn’t even on any medication apart from a weak steroid, she could well have lived another year or two if they had fed her.

    She was sufficiently strong that it took 6 days of them starving her before she finally succumbed.

    Her death is currently under investigation by the Coroner since there was no clear cause of death.

    • bumble bee says

      My condolences to you and your family. What a horrific situation to have to endure. Since when are health professionals given the ability to over ride what the patient and family want done for treatment and care. They should never have the right to go against what the patient and family decide is best. I hope the person responsible loses their license to practice and the hospital penalized. Personally, I no longer trust the medical profession and have learned that what they recommend does not mean it’s in my best interests.

      • IAN says

        Bumble Bee

        I am copy-pasting an excerpt from the Wikipedia entry on the “Liverpool Care Pathway” a scandal in the UK a few years ago where a protocol for the terminally ill within days or hours of death was extended to include the frail elderly while giving them procedural cover to hide behind. It was officially abolished after the scandal became public but it was simply re-branded and it is in essence what they did to my mother.

  8. IAN says

    Dear Bumblebee, thank you for your kind thoughts. I was naive and assumed my mum was only going in to be looked after for a few days and that she would then come home to live out her time; it never occurred to me I was sending her to die. I could have just said no and kept her at home but I had no idea what they could do once they got her in their control.

    I don’t know if my mum will ever get justice, I just have to hope that the Coroner does the right thing.

    • bumble bee says

      @Ian,

      I know too well how doctors can lead people down a path they never wanted to go, and the devastating consequences of not knowing where those paths will lead. Often, they lead to something even worse. Now I question everything medical professionals put forth with an eye to how this will effect the person involved, and the family members.

      Even today, my mother is is rehab and I had to contradict the staff on their so called rehab plan for her. Where they believed that she would need a bedside commode, and be bed ridden when she is capable of walking the rehab halls in physical therapy. I pissed off the pulmonary manager by stating if she is able to walk the halls, she is able to get up and go to the bathroom and by not providing proper physical therapy of having her regain confidence and strength, including using the bathroom in her rehab room they were not doing their jobs. It is learned helplessness. Then of course we have to look at the other issues of her being able to be independent which they were not doing. Well they implemented her using the bathroom, which she does with no problems. If I did not speak up and speak frankly, my mother would come home so far diminished one would wonder what her time in rehab was for.

      So yes, when ever a treatment, or what have you is given by the medical community never assume it is the right course of treatment, find out what the outcomes may be, is it best for the patient, plausible, and does it provide the proper environment that they need. After all, it is not the medical profession that will have to live daily with their decisions, it is the person involved and family. If it does not make logical sense, or the long term outcome is not right, then do not do it.

  9. Like Wales, Canada has a (mostly) single payer (government) medical system. The doctors have more than enough work, and we have long wait times for most medical service. Doctors won’t make more money (once they reach their billing limit) by pushing more services at patients. The profit motive is largely gone. So if doctors pressure a patient to take more treatments even if it won’t prolong life with any reasonable quality it is not for money, but for personal philosophies of treatment and perhaps a bit of hubris.

  10. Sarah says

    d Thanks particularly for your excellent comment.

    How do you learn to be ok with giving up that precious chance of recovery for ‘sunsets’ and such, especially since so many treatments are as painful as the disease?

    The article poses very painful questions, with no simple solutions. I understand but deeply dislike the cynicism of blaming Doctors, ‘big Pharma’ and greedy hospital administration for giving hope & offering treatment. What would you prefer? Denial of hope? Denial of treatment? An end of life palliative expert to decide what will and won’t be paid for by the government? It’s not easy to bear responsibility for making these decisions. It’s actually horrible. But still better than being completely powerless.

    It’s far more proactive and life affirming to discuss these issues with loved ones while we are healthy.

  11. Elwood wulf says

    A missing component might be the spiritual side of things. How can I be sure I will go to heaven and see my parents there? What about the guilt I feel because of the mistakes I’ve made? Most doctors will be materialists and have no idea how to address anxieties around topics like these.

  12. Cynical Old Biologist says

    I am troubled by the idea of spending any accumulated wealth to eek out a few more painful months with little quality of life when I could, instead, end my long, interesting, and productive life while not yet in daily great pain without prospect of significant improvement. The added benefit of ending fairly well and early is the passing on of said moderate accumulated wealth to my children for their greater happiness and success (rather than on to an enthusiastic aged care/medical system). As someone who understands biology, nobody can stand in my way if I have the courage, when the time comes, to act on this ideal.

    To quote from Life of Brian, “You know, you come from nothing, you’re going back to nothing. What have you lost? Nothing!”

  13. Andrew Roman says

    In Canada we now have medically assisted death by injection in cases where the patient requesting it has a terminal illness with death being reasonably foreseeable. There are safeguards to avoid abuse. This way a patient can die with some dignity and choice over timing. I would certainly choose this if I become terminally ill.

  14. Carl Geier says

    This essay touches on some of the points of Being Mortal by Atul Garwande which was the only book my men’s book club read that was unanimously praised. The prime question we all need to ask is if time gets short, what is important to us.
    As a retired physician, I share the concerns and criticism of those of you who are outraged at the frequent insensitivity of the hospital setting. The most misnamed person in the hospital system is the so called “patient advocate”.

  15. Julie Farkas says

    I can’t get into palliative or hospice care because my doctor can’t guarantee I’ll die within six months. I understand that it’s a difficult call to make, but I am so very tired of making the rounds of doctors, treatments, and tests. But I have to continue this kabukki dance so that I can keep receiving the drugs I take that make the pain bearable. Please tell me why I can’t choose palliative care without a referral from one of my doctors?

  16. ianl says

    Nembutal on the request of the patient. This is the very best of palliative care. I nursed my wife of 35 years at home until her death (almost a year) with an incurable CNS disease that was so cruel and despicable in its’ relentless progress that her heart just broke.

    She was perfectly cognisant until the last week or so and had many times wished for nembutal. I could not comply because I had no access to aquire it and if I had, a charge of murder would result for me.

    No palliative doctor with “tricks up their sleeve” will even admit to this point. The palliative team was for the most part like a team of ministering angels, but they could really do nothing more than administer the increasing doses of morphine.

  17. Stephanie says

    Without the benefit of hindsight how are you to know you are in the final year of life? My grandmother has been facing medical issues for 10 years now that could have been signals of end of life. She hates that she has to spend 3 hours, 3 times a week at the hospital, and that something goes wrong every few months that requires an urgent ambulance ride and several weeks in the hospital.

    She’s wanted to give up before, but if we had let her go when those miserable thoughts took over, she would have missed out on seeing her grandson become an engineer, her granddaughter get married, her first great-grandchildren. I’m 6 months pregnant now and my mom keeps her motivated with thoughts of seeing my daughter. My grandfather is healthy and strong, but after 65 years of marriage his wife’s passing will mean the end for him, too. When you don’t know how long you have, expecting people to just give up and die is horrible. Yes, life is hard, especially when facing death, but that’s no excuse for suicide, no matter how sanitized.

    Our trouble in countries with socialised health care is increasingly going to be that services are withheld, not that doctors are overzealous on treatment. The last time my grandmother was in the hospital, in Quebec, a doctor urged her to sign a do-not-resuscitate at 9pm while she was alone. As budgets get squeezed in this unsustainable system, it will be the sickly old whose care gets cut first.

  18. Brian Villanueva says

    I read Being Mortal by Atul Gawade about 3 years ago. It’s a wonderful resource for those trying to navigate the “when to accept the end” question of long-term illness. Specifically, he’s helped me understand what hospice care is.

    Hospitals exist to make you briefly miserable now in order for you to have lots of good days in the future. Hospice exists to give you your best day today, even if it means your life might be a little shorter.

    The trick of dealing with long term acute illness is knowing when to transition from one to the other.

  19. johno says

    Hindsight is always so clear… it’s simple to say treatment was futile, if you already know that the person has died.

    What you characterize as ‘lost opportunity’ is in reality the human nature to survive and not quit. Who are you to say that in giving up, the person ‘lives a better life’? It is not in the nature of a human to give up. And very ill people certainly don’t need primary care givers encouraging them to give up.

    As for assisted suicide… I have grave misgivings. Suicide isn’t illegal to protect the dying. It is illegal to protect the living from death. For every incurable disease, there is at least one case of greedy relatives pressuring an infirm person, or a doctor in a socialized medicine organization with tight budgets.

    Killing yourself shouldn’t be easy.

  20. GregS says

    My uncle died of cancer in his living room. His family had moved his bed downstairs so he could spend the last few weeks of his life looking out on the neighborhood he loved.

    A week before he died, his sons and grandsons gathered on a Sunday morning and marched as a group to the local barbershop where he went once a week to have his flat-top haircut sharpened up. The barber opened the shop for an hour after church, just for them, and gave each one a flat-top cut. It was their way of honoring the old man.

  21. Pingback: True but Forbidden 35: From 1964 to Eternity - American Digest

Comments are closed.