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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:


 

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