You should not have to win a lottery to die in dignity

From the archives: End-of-life care is a ‘national embarrassment,’ doctors tell federal government

A woman holds the hand of her mother who is dying from cancer during her final hours at a palliative care hospital in Winnipeg

(CP photo)

On February 6, 2015 the Supreme Court struck down Canada’s ban on doctor-assisted suicide. In 2013-14, Maclean’s partnered with the Canadian Medical Association for a series of town hall events across Canada on end-of-life care:

To have the death she wanted, 89-year-old Kathleen (Kay) Carter had to sneak out of her North Vancouver care home, and out of the country, under false pretenses. She was near paralyzed by spinal stenosis and had made it clear to her seven children she did not want “to die inch by inch.” She was a well-read woman of sound mind and strong views. She informed her children of her decision to travel to Switzerland, where euthanasia is legal, and where, after careful medical and psychological vetting, she was accepted by the Dignitas clinic for her date with death.

While she was open with her family, she had to tell her friends and the staff at her care home that she was going to Toronto to visit her sister. She hated the deception and the inability to say farewell, said Lee Carter, her daughter, and one of the family members who accompanied her to the clinic. On Jan. 14, 2010, she wrote a note subsequently sent to 120 friends, saying “I have chosen to die with dignity tomorrow.” That next day, surrounded by family, she drank a lethal drug, nibbled on a Swiss chocolate and drifted off to death.

It was a good death, Lee and Lee’s husband, Hollis Johnson, said many months later as I sat with them in their home in the Fraser Valley. “It was such a positive experience,” Lee would tell me.

Not all Canadians are as lucky to control the manner of their dying, not by a long shot.

On Tuesday in Ottawa, the Canadian Medical Association (CMA) released their report of a national consultation on end-of-life care conducted in conjunction with Maclean’s and based on the results of five town-hall meetings held across the country, and on a spirited online forum.

At its essence, the report is a call for leadership, provincially and territorially, but especially by the federal government. To say our laws and our health care system are ill-prepared to cope with the one inevitability we all face is a gross understatement. As CMA president Dr. Louis Hugo Francescutti, an Edmonton emergency physician, said Tuesday, “It’s a national embarrassment we don’t have a better way of people ending their lives.”

This does not mean that all, or even most, Canadians want to avail themselves of assisted suicide, as Kay Carter did.

I served as moderator at two of the two town halls, in Vancouver and Regina and, as elsewhere in the country, there was a broad spectrum of opinion on all aspects of the complicated business of dying. One young pharmacy student in the audience at the Vancouver hearing announced she could never, in good conscience, fill a prescription for someone intending to end a life. That same evening, an elderly woman in a wheelchair said she considered it a form of “elder abuse” that she was not allowed to have help to end her life when she saw fit.

Mostly, the concern of Canadians boiled down to control, or rather, the lack of control many have experienced as their loved ones lay dying. There were examples of advance-care directives and do-not-resuscitate orders being ignored, and many sad cases of families who had avoided the topic of death until it was too late to know what level of medical intervention a loved one had wanted.

There were many stories shared by the audiences of loved ones who had no access to palliative care services, of people whose final days were spent in acute-care wards—or worse, in the controlled chaos of an emergency room.

It’s a thoroughly unacceptable fact that 70 per cent of Canadians do not have access to palliative care, whether it is delivered at home, in a separate hospital ward or in hospices. Palliation is a sea change from acute care. Palliative doctors and nurses aren’t trying to save the dying; they are there to keep them comfortable, to control their pain, both physically and emotionally, and where the medical intervention is more likely to be a bubble bath than a defibrillator.

Some months back, I spent six weeks at the hospice bedside of a beloved family member. When she was moved there, after difficult and ugly weeks both at her home and in an acute-care ward, she called it “a five-star hotel.” She said she felt as if she’d won the lottery and, in effect, she had. There are only 10 hospice beds in the city where she lived.

You should not have to win a lottery to die in dignity and without pain.

While physician-assisted dying got most of the media attention at the release of the CMA report, End of Life Care: A National Dialogue, most of the town-hall audience had a broader appreciation of the nuances of death. The CMA report accurately reflects what we heard during the forums. Among its recommendations:

All Canadians should discuss end-of-life wishes with their families: Care directives—living wills, some called them—“must be appropriate and binding” for their jurisdiction.

A national palliative care strategy must be developed that gives all Canadians access to such services. Palliative care, properly delivered outside acute-care hospitals and emergency rooms, will probably save the system money, Francescutti said.

Doctor training must improve. All are taught in medical school to deliver babies, but end-of-life care is given short shrift in most curriculums.

The Canadian public, and its doctors, are divided on whether laws banning euthanasia and physician-assisted dying should be maintained. What is lacking, the CMA says, is federal leadership.

The CMA will revisit the issue of physician-assisted dying at its general council in Ottawa in August, but, as Francescutti said, it is society that must ultimately make the decision. “Baby Boomers will not accept the level of care that they see their parents and loved ones are getting right now.”

It was clear from young and old in the consultation that many people are less afraid of death than the circumstances of their dying. They want to die free of pain, and not be a burden to their loved ones. They also want a measure of control. For some, that would include the possibility of a medically assisted death, even if, ultimately, they chose not to use that option.

Highlights of the townhall consultations:

St. John’s: Feb. 20

Vancouver: March 24

Whitehorse: April 16

A “perfect storm” of events may force the federal government to weigh in on a matter it has happily ceded to the provinces, which administer health care.

On June 5, the Quebec government passed a law that allows doctors, with the consent of patients and with many safeguards, to administer drugs to hasten death. The provincial government has said it won’t prosecute doctors who assist in such deaths, but federal Justice Minister Peter MacKay reiterated again on Tuesday that assisting a suicide will remain an offence under the federal Criminal Code of Canada. “It’s certainly not our intention as a Parliament, as a federal government, to reopen the debate.”

Yet, there are other pressures that may force the issue.

Conservative MP Steven Fletcher, a quadriplegic, has tabled a private member’s bill to legalize physician-assisted death under strict conditions. While it has little hope of passing, it’s the first time in years the subject has been broached in the House of Commons.

Listen to an interview with Fletcher here:

And this October, the Supreme Court of Canada will revisit the issue of physician-assisted dying. Two decades ago, it narrowly voted, five to four, to uphold the law banning assisted suicide in the case of Sue Rodriguez, a Vancouver woman dying of ALS.

This time, the top court will hear appeals involving the deaths of two other British Columbians, Gloria Taylor, also stricken with ALS, and Kay Carter. Taylor, after a lower-court victory, was for a time the only person in Canada legally allowed to seek the help of a doctor to die. In fact, she died without exercising that right.
And Carter, of course, travelled to Switzerland to die, at a cost of many thousands of dollars and with a residual worry that her family members might be prosecuted for helping her make the trip. They were not.

These two women may yet alter the future course of death from beyond the grave.

Whatever the court decides on the issue of doctor-assisted death, the federal government will not easily bury the broader issue of end-of-life care. Canadians are not well-served in their last days and, as a CMA national poll has found, the issue is important enough for people to change their support to a party that appreciates the need to make changes.

Kay Carter’s family sees this as her legacy. “She absolutely loved spirited debate,” says her son-in-law, Hollis Johnson. “This would be just perfect for her. She wanted a Canadian conversation around this.”

More on the end-of-life debate:


You should not have to win a lottery to die in dignity

  1. time for the government to plug into public opinion on this. For those that don’t agree they don’t have to elect for assistance with their ending. It is a very personal decision. Look at the experiences that jurisdictions have had that allow assisted suicide with varying conditions – haven’t heard on abuse issues. I want the option of an ending that I can choose – and as I have read many want the option but don’t exercise it. Comforting to know I can die in dignity and in a manner of my choosing..

  2. Quick hide your dignity the prime minister is coming.

    • If this was partisan politics issue, then why didn’t liberals legalise when they had majority?

      Two sides to argument, not easy business.

  3. “That next day…, she drank a lethal drug, nibbled on a Swiss chocolate and drifted off to death.”

    She could have done same thing in her own home in Canada without all the trouble and airfare if she really wanted… combination of two legal items is fatal, and Hollywood stars kill themselves all the time by accident (or intentional) with similar.

    There are ethical considerations with suicide that aren’t touched on here… people sometimes are suicidal but then change their minds and find ways to enjoy life. Sometimes illnesses are considered fatal but then people recover/get better/cured.

    I agree that too much money is spent on extending life and too little on making life worth living/enjoyable, especially with older people.

    • “people sometimes are suicidal but then change their minds and find ways to enjoy life”

      Are you serious? Why would an individual with a terminal illness in intractable, unbearable pain change their mind and “enjoy life”?

      • terminal illness are not always terminal. Unbearable pain sometimes isn’t so unbearable. Lots of shades of grey.

        I personally know of one case where he was told weeks to live from lung cancer and he lived for another year smoking heavily the whole time. Similar person eating healthier, no longer smoking and perhaps taking some new experimental drugs that help immune system detect and destroy cancer cells may have had small chance to live.

        Given a focus on something he really enjoyed, eg computer, he claimed he could block out pain.

        Not easy business to decide and 1000+ different variations of how sick and how depressed a person is. 30 year olds on regular basis try to kill themselves.

        • It is already well known that dentists are obsolete/nearly completely not needed if people at e same diet as 100+ years ago with less food that rots teeth and more green vegies. (Study compared children with same genetic makeup on each diet and those on traditional diet had less than 1/20 cavities, I know personally and from internet, that even broken teeth grow a leather cap and are ok if you eat better diet)

          Possible that with life style changes and experimental drugs that some who are supposedly terminally ill may live for years and perhaps even recover.

          I do agree that doctors focus too much on making people live longer and too little on making life enjoyable. If they worked harder on the enjoyable part possible that some suicidal may feel different.

          • I personally have lived with damaged tooth for 10+ years with no problems except when I eat like other people rather than good diet, tooth is in much better shape then root canal of better tooth from years before.

            Immune system can fight off stuff like cancer, well known that eating certain foods helps. We eat crap food overall. If we could only afford to eat dandelion soup and bulk onions and other vegies and only a few scraps of meat like extremely poor people diseases like cancer, stroke, heart disease, diabetes, organ failures, etc would all be drastically reduced, quality of life might be drastically increased because not almost dead.

            IMO best way to help people is to have more “home care” type care rather than hospital, let them have something useful to do, reason to want to live, healthier diet, etc. Grow a tiny garden if able… nurse can check in and help them go to bathroom if they need that, if they die happy in such situation rather than 24 hours of doctors care, better overall and not paying 1000 a day in hospital bills…. lots of middle ground rather than just stick in hospital or suicide.

  4. We permit the murder of healthy babies prior to birth. Surely we can assist the aged the infirm and the unfortunates further suffering. The decision should be there’s and no one else.

  5. Don’t trust the clowns….the Canadian medical establishment or the Harper government with your end of life care.

    When my time comes, I’m going to seek the professional services of the Dignitas Clinic in Switzerland. But I will be sure to liquidate all my assets in Canada. Then, I’m going to put the entire cost of the trip and procedure on a line of credit and stiff some big bank. I’m also going to stiff CRA by not filing some tax returns leading up to my exit. Good luck chasing me for the money Canada. I estimate the value is approximately $40,000. Multiply this amount by whoever else follows my lead!

    • Why the Harper government, and not also the chretien/Martin government? Why is this partisan politics?

      Why do you need to go to Switzerland when you can buy stuff to put yourself to sleep permanently and painlessly the same way 30 year old hollywood stars kill themselves if no one rescues them in time?

      • “you can buy stuff to put yourself to sleep permanently and painlessly”

        Exactly what “stuff” are you talking about. A do-it-yourself job is a recipe for disaster. I wouldn’t want to take the chance. When you don’t succeed, you’ll be in a real mess. Dignitas method is absolutely quick and painless.

        As far as “partisan” issue, all I know is that it will never happen with Harper. It might happen with Trudeau…but I’m not leaving it up to these clowns or the CMA who have vested economic interests in prolonging suffering.

        • I am not going to explain to all the 20 year old drug addicts who are depressed because off their binge how to simply and easily kill yourself. However if someone wanted to kill themselves they could easily do the research, ask the guys in other parts of world where it is legal, what to take and how much, etc.

          I know from simply remembering what we learned in high school onward what *not to do* in order to not kill yourself accidentally… only way a 30 year old or 100 year old suicidal would be saved is if someone caught it and phoned 911 in time, hollywood young people die all the time.

          All sorts of issues, eg there is incentive for evil kids to create situation where their parents want to kill themselves so that kids inherit faster.

      • David, that’s why the Title of article is “You … to die in dignity” The keyword here is “dignity”.
        The Canadians Gov’t can’t seem to grasp this idea, which in essence, has already been paid for, by every single Canadian Taxpayer.

        And if our future Gov’t still doesn’t get it?, then i agree with DRVONBRAIN’s method wholeheartedly, on this one, and when the time comes, just …. “smile away”. ;)

    • …count me in. !

  6. It would be nice to have a balanced story with arguments from proponents of both sides. Lots of shades of grey in issue such as this. For example, young healthy Hollywood star is unhappy with her life and decides to commit suicide? If she is 80 rather than 30, do we let her?

    If you take the position that a 30 year old has mental illness issues and may want to live later, same issues can come up with 80 year old person.

    “Assisted” means a doctor helps. Anyone can buy a drink that puts them painlessly to sleep forever if they really want and are able to move around enough to buy stuff in store and drink out of a glass. Hollywood stars kill themselves on regular basis, not a secret how.

  7. This is not Quebec vs Canada nonsense that the CMA is trying to pawn off. If a referendum was conducted on the issue, a full 80% of ALL Canadians would favour death with dignity legislation. Yet, the wishes of the majority are subverted by the Harper government catering to a few scary 13th century religionists and a palliative care (death) industry with vested economic interests.

  8. No article should ever be published without reference to :
    (a) the horror story in the Netherlands where over 3000 elder people were euthanized without proper records.
    (b) watching the movie ” Soylent Green”

    PLUS: do you want to die with dignity?
    Then avoid the system and simply follow the dying process without involving others.
    If it is the ” moral core” or a ” faith ethic” that determines your direction ..then a good death does not include asking others to be involved in what may be constituted ” murder” ( the elephant in the room)…
    Death of the body is a natural ending in the cycle of life….

  9. Life is precious….I am the first to agree. However, I feel uniquely qualified to chime in on the issue. My sisters and I provided palliative care at home to two family members, my mother then a few years later my sister. No-one loved life more than these two brave women. But they were stricken with cancer, both diagnosed at Stage 4 and beyond any treatment. I and other loved ones tended to them and watched their illness take them from us a bit every day. We watched them cry in pain as no meds available to them could control it. We watched the look on their faces as we had to diaper and bathe them. We reassured them when they apologized to us for “being a burden”, despite our reassurances that they were not. We witnessed the side effects of their ineffective palliative meds. No-one should have to see their loved ones go through something this horrendous. There is no dignity in leaving the world this way – no joy, no happiness to be prolonged and enjoyed. There is only unrelenting pain, physical for the patients and emotional for the caregivers. More than once they asked us to end it for them, but because of this country’s archaic laws, we were afraid of the legal consequences…..but I admit to thinking long and hard about it. And ironically, because they were both relatively healthy before their cancer (strong hearts etc.), they hung on longer than anticipated, making their final journey even more painful, for them and for us. As I said, life is precious – but the final few weeks/months for a palliative patient is not “life” – it is a biological existence that a patient must have the right to end at a time of their choosing. The Swiss have got it right!

  10. Some religious zealots, claiming to know “God’s will,” force their personal views on abortion, assisted suicide, and more, on the whole country. Well, what do you expect from these backward countries like … oh, wait.

  11. Legalized euthanasia, but marijuana is illegal, perhaps this god blessed elderly folk would like a little vaporized marijuana instead of wanting to die. #THINK 

  12. Just as we sign a consent form on our Drivers’ Licences to donate organs, we should also have the right to sign a consent form for ‘Right to Die’ on our Drivers’ Licences, with or without donating our organs.

    Do you believe that doctors in Canada and the Government want us to die, oh, they love us, if we agree to donate our organs, however, if you take those organs to with you to your grave, you will be tortured in palliative care units all across the land!

  13. During my 16 years in England, I spent three years (1995-98) working as a caregiver – living with and caring for several elderly people suffering from advanced dementia. I saw first-hand how this disease leaves its victims trapped in a truly terrifying, living hell – with no way out except fading slowly and somewhat agonizingly into a merciful death. I often felt my charges were closer to anxious zombies than human beings – and did often wonder about the ethics of prolonging life as long as possible under those circumstances.

    My time as a carer left me decidedly unwilling to experience that kind of ‘life’ myself. As such, I can say hand on heart that the day I’m diagnosed with dementia is the day I start making moves to check out. When it comes that kind of illness, I’m going to quit while I’m ahead.

    In fact, maybe we should be a little more like Latin America – where people appear to embrace and celebrate death rather than attempting to ignore it and lock it away behind closed doors, as westerners seem inclined to do?

    Raising awareness
    This year, I self-published The Carer, a short e-novel based on my time as a live-in geriatric nurse. Described as a “gritty urban thriller with a social conscience”, The Carer offers a “Faustian tale of elder abuse, patricide by proxy and the corrosive effects of power.” You can buy The Carer for USD0.99 from Amazon and all other major ebook retailers.

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