For some patients the harm is not in dying, but in being kept alive

It’s been five years since my grandmother died, and I still remember how sterile, cold, and distant her hospital room felt, no matter my family’s loving efforts to make it look more like home.

I still remember the guilt-feeling too, of having to work up the nerve to visit her there. You see, some days were better than others for her; she experienced a lot of physical and psychological suffering during the last years of her life. There were good days, when she accepted her condition with ease, grace, and humor. And, I’m happy to say, there were a lot of these days.

But there were also days when she resented, and was traumatized by, being stuck in a bed, only to be moved back and forth between an emergency room and a long-term-care facility until the day she died ‘naturally,’ in-hospital.

I was recently reminded of the suffering Nan endured during her declining years, when I read the story of Susan Griffiths; a Canadian citizen who was assisted to die in Zurich, Switzerland on April 25. Susan suffered from multiple systems atrophy. Before her death, she gave voice to her personal belief that a prolonged and medicalized death is unduly painful, undignified… futile even. She regarded the legally-accepted Canadian practices of palliative care and withdrawal/withholding of life-sustaining interventions not as options, but rather the cruelest of death sentences. Her only recourse was to travel to Switzerland in order to die on her own terms, and she considered herself fortunate that she and her family could afford to do so.

What people like Susan and my grandmother show us is that the way a person dies may be of so much significance to her that it can profoundly affect her life-structure – the meaning she has created, her identity, accomplishments, and her core interests – in tragic ways… in ways that far exceed the physical deterioration of the body. Knowing this, and knowing that our society has the technology to enable a pain-free death, gives rise to the issue of whether physician-assisted dying should be part of Canadian medical practice for terminally-ill patients.

It is my belief that what should be weighted in end-of-life care is not merely the presence of life itself and the state of the body, but also the value of that life for the patient. When the law hamstrings physicians to act on the basis that more life is always better, some terminally ill patients are left suffering, held hostage by a life that they do not want. An individual should not be forced to let a terminal illness reduce her to a shadow of her former self. She should be free to end a life she no longer wants in a way that is not violent, and does not involve discovery by friends and family.

I want to be clear that I am not arguing for physicians to help people to end their lives for any reason whatsoever, but rather to regard suffering as a legitimate medical condition and thereby broaden what it is we mean by the medical principles of mercy and non-abandonment. These principles must extend to treating persons, not just their bodies.

When the law only enforces one kind of value – when it only cares whether a person’s heart is beating – we leave little, if any, room for a person’s overall best interests at the end of life. Our current law’s focus on the patient as an object to be treated, cured, and restored to ‘normalcy’ is coming at the expense of other dimensions of human existence. More focus must be devoted to patient experience and choice.

Terminally ill patients who are not depressed, who are competent, and who have formed enduring decisions should have the power to choose if, when, and how to use the medical technology that is supposed to be for their good, to determine for themselves what they are willing to endure.

For some patients the harm is not in dying, but in being kept alive.

The comments section is closed.

  • sam plover says:

    Such a well written, insightful article.

    I keep reading similar statements in many articles. Statements such as “as long as they are not depressed”. Illness often ‘looks’ like depression and acts what the general public thinks depression is. It’s also a convenient tool to be used not to validate a persons physical suffering. It can not just become an obstacle, but an intentful or accidental obstruction. Not just to MAID but also to healthcare and even palliative. There are a lot of non linear diseases that apply for MAID, refused and they die, only to be swept under the rug of well kept secrets. After all, the responsible persons only need to say 4 words. Did not meet criteria. But no one is the wiser, the public knows not the struggle of the person with the disease, how indeed they qualified.
    ‘Depression’ and depression from your body disease are definitely not one and the same. Of course I am from the school that believes the head is part of the body. And I’m also from the school that thinks the word anxiety and depression is still conveniently used instead of words like Hysteria. Distress, often looks like something mental. But it is the most natural action reaction to threat. Have you ever seen antidepressants, morphine or antinxiety meds thrown to a drowning victim?
    Well why not, because he can certainly act and behave in anger, rage, fear, distress and if not helped, probably drowns in deep sadness.
    We should be utmost on guard to use the words anxiety or depression in people with diseases we have tests for.
    And the rest of that body? Well, so far we are watching monkeys for strange behaviour and putting a name to it.
    Now we just have to find a normal and define it on a legal level and anyone that strays outside of that, good luck.

    Bottom line, assisted dying should be about suffering and that suffering should be defined by the patient, not a judgmental medical person who is just not quite sure or confident in their role.
    The fear is, what if the medical provider has not seen a lot of people, hundreds of people with the same disease? They have to listen to the patient, first and foremost. Why ask your child how they are feeling if you will decide for them in the end anyway?

  • Alan Boucher says:

    When an otherwise life-loving person makes a rational decision based on the hopelessness of an intolerably painful situation that they are in then unless there is something concrete to be done to improve their condition, the patient’s decision should be respected.

    %featured%If a person is in an irreversible state that is for them worse than being dead, then why would we interfere with their need to exit life?%featured%

    Is it because they might change their mind? Is it because we believe that they are wrong about their condition being worse than being dead? Is it because we do not believe that they are mentally healthy enough to make such a decision? Or is it because our religious or moral senses are offended by the concept?

    Certainly we must ensure that the patient is steadfast in and reasonably cognizant of their decision and that their condition does meet a standard of medical suffering and futility. The patient, family, and health care professionals should be able to evaluate and decide this with reference to established guidelines. Controls must be in place to prevent abuse.

    In the case where the objections are related to issue of moral sensibility, religious or other personal values, these objections are invalid in a progressive civilization where freedom from such impositions are or should be a legal right.

    • Sharon Wilton, Project Share says:


      For many of us the religious or moral senses are not offended by “only” the concept of destruction of a life……. it is the choice to make it an event that involves the lives of others in assisting with the process.

  • irene ogrizek says:

    The problem I had with my elderly mother was different. She was very ill but did not want to die. The momentum in her acute care hospital, however, was headed in the opposite direction. While she was unconscious, I signed a DNR. Against expectation, she recovered and that’s when I had to battle to have the DNR reversed. The paperwork itself wasn’t a problem, but getting medical professionals to actually treat her was: after a few days, it became clear they were studiously avoiding our family. I was certain they were hoping my mother would die of an attrition in care.

    So I don’t see that there is a lot of difficulty when it comes to allowing patients to die. It’s not policy, but I saw a lot of tacit understandings of this sort unfolding all around me — patients and their families were deciding against medical intervention all the time — and so apart from the kind of death Susan Griffiths wanted, I’m not sure what the problem is.

    The truth is people are already making decisions to end their lives and doctors are allowing it to happen. I don’t have a problem with that, and I don’t have a problem with Susan Griffith’s choice either. It’s the kind of problem my family had that worries me. My wishes and my mother’s didn’t seem to make a difference in her acute care hospital and I suspect that our experience is not unusual. Quite frankly, I find that far more troubling.

  • Sharon Wilton, Project Share says:

    Elizabeth et al…..

    I am greatly interested in the focus placed upon the emotional , mental, physical, democratic, status of the patient in the process of dying ( and identified as such by some technical means) I would like to see more emphasis (even a mention would do )on the spiritual ramifications.

    RE: Considering the role of the physician:

    As one,who lay dying ,once upon a time, I can guarantee you they are emotionally flat near the point of death and it is often the compassion and passionate efforts of medical, spiritual, interventions that turn the tide.

    Q-Is the value and quality of life age-segregated?
    Q-Is the cost to the system a driver ( e.g. Liverpool pathway)?
    Q-Is historical precedent on unilateral decision making relevant?
    ( remember the scandal of several thousand euthanized without record of permission? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC479159/ )
    Q-Is debility /disability a driver?
    [If cost of care or physical debility is a risk factor then who decides is a Stephen Hawking is to be spared?]
    Q- is the livelihood of the physician jeopardized by refusal or is that offset by having palliative care in it’s own setting?

    Since surviving the ” dying experience” I have added at least 2 pages to my C.V. after both prayer and medical helps. That certainly added value for me …. and possibly for others. :)

    RE: Tacit knowledge:

    Having exposure to multiple settings where people lay dying ( critical care and longterm care ) I have never experienced anyone asking to be killed…… and there is the difference.
    Q-When is dying natural .. and when is it considered killing?

    Q-Does the assignation of advocacy rights over ” physical” decisions constitute the same rights over ” legal” decisions ?

    Q-Can euthanasia be considered at the same level as abortion when the individual slated for euthanasia is considered a ” person”?

    If we are the ultimate deciders of that then it is all 1 to 1 and preconditioning can make the idea palatable and ?apparently real even if presented under the guise of ” learned helplessness” from longterm illness and dependence ( or possibly even despair from abandonment )

    RE: The request for Intervention and experienced interpretation

    Having said all of the above it is apparent that a decision on the ” democratic” answer to the ” right to live” is also close at hand and the one ” undefended hill” in the discussion and application is the ability of the individual to still speak for themselves in the third arena.

    1. The medical arena
    is one and presently promotes a type of palliation that is palatable to the living.

    2. The family and selected “intervenors”( family, friends, or public guardian)
    may be biased or not skilled to advocate.

    3. An Ombudsperson

    A possible suggestion for third party in the request for an ” intervention ” is the internal AND external Ombudsman role [ e.g. in LTC the role is declared but not yet properly formed so the resident can speak through their peer representative ( NOT staff rep) ]
    I am assuming this role would have the skillbase to identify the difference between someone wanting to die because they were overwhelmed by crushing “need” ( in self or others) OR inspired by fervent “want” .
    Needs may be a medical argument for mercy ( like shooting a wounded soldier which still can result in court martial ).
    Wants may be a personal argument which begs the question:
    Q- then why involve anyone else?

    Something you may have heard before:

    You may consider a breakfast of bacon & eggs as simply a nice combination for a meal placing equal value on the components.
    However ..the “ balance” emerges when you understand (a) the chicken ( who only made a contribution ) can live another day …..and .. (b) the pig ( who made a commitment ) cannot .

  • Andrew Holt says:

    Hello Elizabeth
    I think that your experiences and observations reflect the very real struggle within healthcare and society regarding end of life. In the absence of agreement we tend to fall back on the tangibles – a beating heart, brain-wave activity, legal, regulatory and professional precedent … We struggle with the more subtle, quieter, more personal values … particularly when there are significant differences or even an outright clash of values regarding life, death, who actually decides … etc. In society we tend to default to ever higher levels of authority for these very real personal decisions … where does the balance between personal choices and societal norms fall at the end of life?Much like Marks earlier opinion blog on Values … %featured%you raise a very complex, and very important discussion that will require a thoughtful and comprehensive reassessment of how society has decided to view, support, regulate and ultimately support individuals and their loved ones …%featured% as well as the health professionals, regulators and political leaders that are stewards of the organizations and agencies that strive to compassionately support the health needs of all people throughout their life journey … from our conception until after our death…

  • andreas laupacis says:

    Hi Elizabeth. The story of your grandmother being “….moved back and forth between an emergency room and a long-term-care facility until the day she died ‘naturally,’ in-hospital” happens too often in our health care system.

    My dad had advanced dementia when he died, and we were very fortunate to have his long-term family physician direct his care in the chronic care facility in which he lived, so he didn’t have to undergo the mutiple transfers between institutions that you describe.

    I think %featured%we need to do a better job ensuring that people who have decided that they no longer wish aggressive medical treatment can receive appropriate management in their long-term care facility. %featured%This can involve active management of symptoms like breathlessness, pain and confusion, and requires professionals who have the skills and time to provide those treatments.

    • Kathy Kastner says:

      Dr Laupacis,

      To your excellent point about the need for ‘active management of symptoms like breathlessness…’ what you’ve described is Palliative Care – which changes the focus to comfort, instead of aggressive medical treatment toward ‘cure’ (although studies show that Palliative Care often extends life)

      Would that Palliative Care was Standard Protocol. However, many people still (wrongly) interpret Palliative as ‘nothing left to do but die’ and many healthcare professionals seem to feel that bringing Palliative professionals into the medical mix means they’ve failed in their area of expertise, and therefore have failed the patient.

      To Elizabeth Doyle’s point about giving patient’s control <> this is based on the assumption that patients have suffiient knowledge, understanding and imagination to determine what’s often un-determinable: what we are willing to endure.

      I am grateful for the opportunity for discourse on this hugely important topic.
      Kathy Kastner

    • Linda Murphy says:

      I am very grateful for the Healthy Debate forum which has started the debate on many key issues. I consider this topic very important for us all – whether we are providing support to parents and older friends or as we consider our own future with the health system.

      My parents are turning 87 this year and they have been living in assisted living arrangements for the last four years – on LTC placement lists for the last 16 months. We were fortunate to have a superb geriatric psychiatrist willing to lead a phenomenal (and heart-rending) conversation with them and other family members about their wishes with respect to end-of life issues a few years ago.

      I remember well the moment when Dad concluded with: “I have lived a good life, I do not want my life extended. I am not afraid of death and my only concern is ensuring that Madeleine (Mom) is looked after if I die first”.

      Mom had been very quiet throughout the conversation until this point and to be honest, I wasn’t quite sure that my Mom was any longer capable of participating in the discussion. However, she looked at the doctor at this point and piped up: “What about me? I have my answers ready”. And did she ever! She did not want to have her life extended by CPR or any machinery; she was not afraid of death and if “her body decided to stop … then it it had done its work and it was time” … she just wished that “we (Dad and her) could stop living at the same time” though she understood that this would not happen. After over 60 years together, their only considerations were for their partner. We completed this amazing conversation with a very emotional hug let me tell you.

      So on one level I feel very prepared for the tough decisions that may lie ahead for my parents and I even though they are no longer able to express their feelings so clearly. However, I remain a little less sanguine that these wishes are captured in an official form that is recognized and accepted by the variety of players and organizations that become involved at the time of a health crisis. In my opinion, it is past time for leadership to address these issues formally in our systems and to develop a single form that can capture a person’s wishes in a manner that satisfies the needs of the various players (individual and institutional) potentially involved.


Elizabeth Doyle


Elizabeth Doyle is a graduate student at York University.

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