Commentaries

Oct/04 Not so Merciful Killings - Proliferation of legal euthanasia around the world is a threat to us all

July/00 In Search of a Good Death A new Senate report warns we are not providing dying Canadians with consistent and effective care

http://news.telegraph.co.uk/news/main.jhtml?xml=/news/2005/02/06/nchap06.xml

'Doctors said they could do no more and sent me home to die – I'm still waiting'
By Melissa Kite
(Filed: 06/02/2005)

The Government's Mental Capacity Bill continues through the House of Lords this week, where it will meet staunch opposition from Baroness Chapman of Leeds. Melissa Kite meets her

Baroness Chapman of Leeds is holding court in her House of Lords office. She is bold, assertive, brimming with humour and thoroughly enjoying her newfound status as a peer of the realm.

Baroness Chapman: the House of Lords is the most egalitarian place she has ever worked in

It is difficult to imagine that when she was born with brittle bone disease, doctors feared that her disability would limit her existence to such a degree that her life would not be worth living.

"When I was born, the medical people said I would be blind, I would be deaf, I would be unable to communicate and I would have no noticeable mental function. Forget it. My life was worth nothing," she said. She cast a look around her red-carpeted office, at the leather chairs emblazoned with the House of Lords portcullis, the piles of embossed stationery and her personal assistant organising her schedule, and added: "That is a little bit different from what I have managed to achieve and where I am today."

Nicky Chapman became the first person with a congenital disability to be appointed to the House of Lords under the People's Peers initiative when she took up her seat in October last year. Her maiden speech was unforgettable, causing a storm in the Upper House as she condemned the Government's Mental Capacity Bill because "if this Bill had been passed 43 years ago, I would not be here".

Lady Chapman argued that, as a sufferer of brittle bone disease, the proposal for living wills could have led to her having been denied life-saving treatment. The Bill, which allows an appointed relative or friend to make medical decisions on a patient's behalf could become a "licence to kill", she said.

Labelled euthanasia by the back door, it continues its committee stage in the Lords on Tuesday and opponents are hopeful that ministers are preparing concessions. It then returns to the Commons where it was passed only by a knife-edge vote in December.

Lady Chapman said she would continue to vote against it unless loopholes are closed that could allow patients to have treatment withdrawn against their wishes. "I can see areas where this law could be used and abused. It could open up doors for people who are very frail to be allowed to die. However, I do think concessions will be made. This is not like any other Bill when you can change it again if it's wrong. We have got to get it right now. I won't be happy until I can see the concessions on the table."

As the baroness manoeuvred her electric wheelchair around the plush corridors of the Lords, exchanging witty small talk with fellow peers, it was chilling to think of that doctor's long-distant diagnosis that she had "no noticeable mental function". But Lady Chapman does not blame the doctors. In 1961, she was one of the first people with brittle bones to survive birth. People with such disabilities were often put into a home or given up for adoption, but her parents simply would not take the doctors' word for it. They insisted that their daughter was neither blind, nor deaf, nor was she mentally beyond hope. "That Christmas they brought me a teddy bear and I reached out for it. Their view was that even if I was blind and deaf there were still ways I could be treated so that I could enjoy life. People talk about such disabilities as if they are unbearable but how do they know how it feels?

"When I was a few months old the doctors said there was nothing more they could do for me, they sent me home to die – and I'm still waiting.

"I'm sorry," she adds, laughing. "I do have a very strange sense of humour."

The sheer energy of Lady Chapman's conversation belies the fact that she is only 2ft 9in tall. Her personality is so large that her tiny form seems to dominate the room as she talks movingly about the clear parallels between her own experience and that of Charlotte Wyatt, the baby from Portsmouth whose parents have been fighting to overturn a "do not resuscitate" order. "I really feel for her parents. If they say they can see an improvement in their child, which is what they have been saying, then they should be listened to.

"I think that in any situation a person should be given every chance to survive."

Lady Chapman also finds chilling the case of an acquaintance recently advised by doctors to give up her newborn son because he had Down's syndrome. "They said put him in a home, forget about him. He is doing very well now. The parents are bringing him up with the rest of the family."

Lady Chapman is astonished that she was chosen for elevation to the Lords. She was "not the acceptable face of disability", she told me. "In a lot of ways, being this different makes it easier for me. I can't hide it. People have to confront my disability as soon as they meet me. One of my earliest memories is being three or four and my mum saying: `Well, Nicky, you have got to get used to people laughing at you or you will never go out'."

Has she got used to it? "Yeah, it's strange," she said in her distinctive, high-pitched Yorkshire accent. "You develop a shell. If I'm having a bad day it might upset me. If I'm with family or friends I get upset for them."

However, that does not make her a fan of political correctness. She prefers people who get sincere and honest words wrong to those who use the right language and then "stab you in the back".

Her conversation is peppered with jokes, many at her own expense. It is this humour that has served her well through the years. She came into the world with 50 fractures. ("The midwife," she adds, "was not impressed"). She has suffered 600 fractures in all and countless incidents of eye-watering discrimination. Every now and then, people point and laugh at her in the street. "You think things have progressed and then something like that happens and you realise that nothing's changed."

As a child, no school would accept her and so her parents taught her to read. At five, the local authority provided a tutor for two hours a week. When she was eight, she won a place at the John Jamieson school for the physically disabled. A further education college in Leeds followed and a degree in mathematics and management. Employers, however, refused to give her a chance. Eventually she taught computing to young offenders and began a career helping the most disadvantaged in society, work that the independent panel on peers appointments described as "inspiring". She is the chairman of the management committee of Leeds Centre for Integrated Living. A passionate Leeds United fan, she also chairs the Leeds United Disabled Organisation which campaigns for access for disabled fans.

Lady Chapman was forced to give up paid employment after breaking a leg so badly that it did not heal. She now depends on benefits and fears that the clampdown on incapacity benefit proposed by ministers last week could have a serious effect on people like herself. "I worry," she admitted. "I could find myself in this trap. At the end of the day, the scroungers will get away with it. The people who are vulnerable and need the money are those who are filling in the forms honestly and not exaggerating – and they will be the ones who suffer."

She said that she may well oppose such legislation. She also intends to campaign for integrated education – "special schools are really good at teaching people to be disabled".

Lady Chapman describes the House of Lords as the most egalitarian place she has ever worked in. "I didn't expect it to be this accessible. Everywhere else I have had to go in there and change attitudes. Here, people assume that because I am a peer, I must have done something to deserve it. Everyone has made me feel welcome."

She spends three days a week in the Lords, then it is back to being Nicky Chapman, living in a bungalow on benefits and going to watch Leeds United at Elland Road on Saturdays.

"I'm living two lives. I feel like two Nicky Chapmans. My family are very proud of me, but they treat me just the same.

"On the day of my induction, I was dressed up in the red ceremonial robes and my brother said `you look like something escaping from Santa's sack'. That made me laugh." And this time, I take my lead from Lady Chapman and allow myself to laugh, too.

TOP

Calgary Sun, October 10, 2004

Not-so-merciful killings

Proliferation of legal euthanasia around the world is a threat to us all

By Licia Corbella

In two days Marielle Houle will be back in a Montreal courtroom where she stands accused of aiding and abetting her ill son's suicide.

The 59-year-old woman was arrested Sept. 26 after she allegedly called police to her home where her 36-year-old son, Charles Fariala, was found dead.

He had been suffering from multiple sclerosis.

Montreal artist Dulcinea Langfelder, who is a close friend of the family, described Fariala, who worked as an orderly in a psychiatric hospital, as a very "intense" man who lived like a "hermit."

"When things looked good, they were very, very good, and when things looked bad, they were very, very bad," she said, adding Fariala was bleak about his prognosis after having seen the worst cases during his hospital job.

Was he in physical pain yet? Apparently not. Was he terminally ill? Nope. So why the death sentence?

It sounds like he may have been depressed and frankly, it sounds like his mother may have been, too, since Judge Raymonde Verreault ordered her to take her medication and see her psychiatrist before he released her.

I have friends with MS who have been living very vibrant, productive and happy lives for 20 years. In fact, thanks to the use of medicinal marijuana, they actually live pain-free, but that's another issue altogether.

I wrote about euthanasia last week and over and over again, people wrote me with nonsensical statements like this: "Anybody should be able to be killed whenever they want by whoever they want," which, of course, is pure and utter idiocy not to mention a serial killer's dream.

Then there's this comment by a young woman who said: "What's it to you if some of us want the right to physician-assisted suicide? It's my life and my body, I can do what I want."

Well, actually, no you can't, but that's a whole other column.

What's it to me? Well that's just it.

The problem with euthanasia -- and this is proven without a doubt -- is that very soon the so-called right to die not only turns into the duty to die but it turns into other people deciding when and how you should die, without ever consulting you at all.

Between the years of 1997 -- when the U.S. state of Oregon allowed "terminally ill" patients to request a lethal dose of drugs from their physicians -- and 2000, 91 people took advantage of that law.

According to opinion polls, public support is highest for assisted suicide in the case of "uncontrollable pain," which really just means that the patient is not getting the right pain killers.

However, according to Oregon's own mandated annual reports on these deaths, NONE of the 91 people who killed themselves said uncontrollable pain was their main motive.

Rather, not wanting to be a burden to family members was a significant motivating factor for those who "chose" physician- assisted suicide (PAS). Had that motivating factor remained static or even slightly the same over the years, then we could feel somewhat comfortable knowing that a societal expectation or pressure was not forming. But that's not the case.

In 1998, 12% of PAS patients in Oregon said they chose this permanent course of action because they didn't want to burden their family. That rose to 26% in 1999 and 63% in 2000.

That's called exponential growth. If that were a company's bottom line, champagne corks would be popping.

This sense of being a burden has become very real for the elderly and infirm in Holland, where euthanasia was legalized -- appropriately on April Fool's Day, 2002 -- but has been in practice since the 1980s.

Studies show that the elderly and infirm in Holland "feel guilty" if they want to live and have virtually no access to palliative care.

But even if they are adamant that they do not want to be put to death prematurely, that is exactly what happens to many of them against their wishes. This is all documented in Dutch government studies.

Tens of thousands of Dutch people now carry cards around with them, essentially stating that they do not want to be "killed" should they find themselves in hospital.

In Holland, teenagers between the ages of 16-18 may receive euthanasia without the agreement of a parent or guardian and children between the ages of 12-16 years old can be killed legally with the agreement of a parent or guardian.

What's more, the patient need not be terminally ill. Claims of mental anguish are enough to exonerate the doctor involved, should they be called to account, which has only ever happened once in Holland in more than 20 years of the practice.

Also, when euthanasia was first advocated in Holland back in the 1980s, advocates were adamant it was only for terminally ill elderly people in severe pain.

Now, 8% of the infants who die in the Netherlands are killed by their doctors. Infants deemed eligible for death included not only those who were terminally ill, but children who were mentally retarded or faced the prospect of living with a chronic illness and the doctors don't have to receive permission from the parents to kill the infant.

So, what's it to me? Why do I care what someone else wants to do with their own body?

I have many answers to that question, but in terms of how this affects me personally I think the answer is obvious.

If euthanasia is ever allowed in Canada, I may be put to death against my will, as is the case in Holland.

Many Canadians believe euthanasia should be available in special cases only--with strict safeguards in place. But it is clear from the Dutch experience that safeguards do not work. The Netherlands has gone from euthanasia for terminal illness to chronic illness to psychological distress to no illness at all.

Vancouver palliative care physician, Dr. Margaret Cottle, questions, "Who will provide these so-called "safeguards"--ie. laws? The government seems the only viable possibility to most citizens. Ergo... the folks who brought us Canada Post and Revenue Canada would be administering and enforcing the regulations which may determine if we live or die. This thought should be sobering."

Rotterdam physician Dr. Karel Gunning is a leader in Dutch resistance to euthanasia. He does not believe the world will follow the Dutch example any time soon. "I think the Dutch example will show too clearly that it is impossible to allow killing patients who want to be killed without taking away the protection of patients who don't want to be killed.. That is too high a price for the 'luxury' of being able to choose euthanasia."

All these reasons and developments argue against legalising euthanasia, but they do not address the main issue. Even if safeguards could be put in place to protect the vulnerable from the unscrupulous, there is a more profound objection to mercy killing. A compassionate society cares for and loves each disabled, sick and dying member of its community. Compassion means literally "to suffer alongside". We have to ask ourselves, "Are we a compassionate society?" If we are, we do not kill weak, disabled, sick people. We do not allow anyone to extinguish the life of another. JL - EPC BC

This legalization is a significant step on the path towards the acceptance of euthanasia as part of medical practice. Since 1994, a legal regulation has existed for dealing with cases of euthanasia and assisted suicide in which the courts accepted these actions as long as certain conditions were met.

The proposal accepted by the Second Chamber essentially contains the following provisions:

1) In order to be deemed legal, acts of euthanasia must be performed according to "careful medical practice." Requests for euthanasia must be voluntary, well considered and persistent, and be made by patients who are experiencing unbearable suffering without hope of improvement. More than one physician must be involved in the decision, and both patient and physician must agree that euthanasia is the only reasonable option.

2) All cases of euthanasia must be reported to and evaluated by regional committees composed of a lawyer, physician and an ethicist/philosopher. Each position also has a deputy member.

3) Acts of euthanasia and assisted suicide will not be punishable if performed by a physician who has complied with the conditions in (1) and has reported the action to the coroner.

4) The coroner attending to a euthanasia case must send his or her report to the Public Prosecutor, as well as to the regional euthanasia committee. The report must demonstrate that all the requirements for legal euthanasia have been observed. In the event of severe infraction, the Prosecutor will not give consent for burial or cremation until further investigations have been conducted.

5) Also minors between the age of 12 and 16 can request and receive euthanasia or assisted suicide provided their parents consent to it.

6) The proposal also establishes a legal basis for advance euthanasia declarations via a type of "living will" in which a patient would request euthanasia in the event he or she became mentally incompetent. Though such a statement does not imply that a physician has a duty to perform euthanasia at any moment, it provides the legal opening to intentionally end the life of an incompetent patient who had signed such a document.

A number of objections can be raised against this ominous proposal for legalizing euthanasia.

First, the proposal does not adequately safeguard the public. The depenalization of intentional killing by physicians constitutes, in itself, a serious violation of the legal protection of the life of all citizens.

Moreover, whenever the committee rules favourably on a case by deeming an act of killing legal, the Public Prosecutor's ability to monitor physician conduct will be compromised, because the Prosecutor will not even see the report of the physician involved in the case. Furthermore, it is likely that cases in which the legal requirements have not been fulfilled will go unreported, since that precedent has already been set. Data on reported cases are provided by the physician who performed the euthanasia; therefore, determinations of whether the legal requirements have been met may very often be biased as well. Adequate control will be impossible.

Second, such legalization will lead to a broader acceptance and increased practice of euthanasia, which will dramatically change the nature of the patient-physician relationship and terminal/palliative care. Once euthanasia becomes a legal option, a patient afflicted with terminal illness or unbearable suffering may have to justify not asking to be euthanized. The recent case of Mr. Brongersma demonstrates the elasticity of the requirement of unbearable suffering, implying that a substantial group of people could become vulnerable to such pressure. (Brongersma was an 86 year old person who wanted and received help in committing suicide because he felt his life had become meaningless and too heavy a burden. The physician was acquitted by the court; see British Medical Journal 2000; 321:1174 [http://www.bmj.org/cgi/content/full/321/7270/1174/a]). At the same time, legalization will undermine the efforts and creativity of those committed to providing palliative care to a terminal patient. Such unintended outcomes seem inevitable in a health care system characterized by increasing costs and the need to make choices regarding resource allocation.

Third, legalized euthanasia is incompatible with the fundamental role of the physician as healer. Since this role and the extent of the physician’s competence is regulated by law, such a fundamental change in the physicians competence concerns society as a whole and cannot be considered as a private matter for only patients and physicians.

Fourth, accepting the euthanasia of minors 12-18 years of age seriously overestimates the capacity of such persons to evaluate the meaning and consequences of a request to be killed. It places an unacceptable burden on these young people.

Fifth, legalizing the euthanasia declaration designed to permit a competent patient to request euthanasia in advance, should he or she later become incompetent, is likely to foster a broadening of the requirement of `unbearable suffering' to `loss of dignity'. Furthermore it is likely to increase the pressure on the physician to terminate a patient’s life when a patient has become severely demented, especially when the patient's family insists on doing that. Such a practice may likely lead to a blurring of the distinction between voluntary and involuntary euthanasia. It is no wonder that the Dutch Association of Nursing Care Physicians has voiced their unhappiness with this part of the proposal.

Finally, although the responsible ministers have admitted during the debate in parliament that a physician who does not want to perform euthanasia to a patient insisting on having it is not obliged to formally refer to a colleague who may be willing to do so, in practice physicians will feel pressured to either perform euthanasia themselves or refer to a colleague. If they refuse to do either, they may run into trouble unless they have indicated in an early stage of the terminal phase of the disease that they object to performing euthanasia. Furthermore, health care professionals who reject euthanasia will likely find it difficult to obtain jobs in certain areas of the health care field.

Henk Jochemsen, Ph.D. is Director of the Lindeboom Institute for Medical Ethics in Ede, The Netherlands and holder of the Lindeboom Chair for Medical Ethics in Amsterdam.

Could Canada ever go the way of the Netherlands -- and legalize some form of euthanasia or assisted suicide? The answer is that it is certainly within the realm of possibility. In fact, at one point in its recent history, Canada came dangerously close to becoming a world leader in sanctioning so-called "death with dignity."

On September 30, 1993, the Supreme Court of Canada came within just one vote of declaring that the federal law prohibiting assisted suicide was unconstitutional. By a vote of 5-4, it rejected an appeal by Sue Rodriguez, a 42-year-old British Columbia resident, that it was her Charter right to decide for herself when to die, and to have a doctor's help in taking her own life. At the time, Rodriguez was slowly succumbing to amyotrophic lateral sclerosis (ALS), a degenerative muscle disorder. Writing for the majority, Justice John Sopinka stated that Parliament was justified in denying her that right. "The prohibition," he stated, "relates to the state's interest in protecting the vulnerable and is reflective of fundamental values at play in our society."¹

But Rodriguez was not deterred. The following February -- after her physical condition had begun to deteriorate rapidly -- she committed suicide. (According to New Democrat MP Svend Robinson, who was with her when she died, Rodriguez was aided by a doctor.)

In the months following her death, it appeared that Rodriguez would accomplish more for the cause of euthanasia than when she had been alive. In response to a widespread call for action, the Senate responded by naming a special committee to study euthanasia and assisted suicide. And Prime Minister Jean Chretien promised that once it presented its findings, the House of Commons would hold a debate and a free vote on the issue.

In June 1995, the committee released a report entitled Of Life and Death. Most senators recommended that the ban on assisted suicide not be eased -- and instead urged the federal and provincial governments to give "top priority" to improving end-of-life care for the terminally ill. But they also proposed that the Criminal Code be amended to allow for "a less severe penalty" for those who commit murder "where there is the essential element of compassion or mercy."²

But the government never acted on the report, let alone keep its promise to allow Members of Parliament to debate its findings. A campaign in late 1995 and early 1996 by 52-year-old Windsor, Ontario, activist Austin Bastable to lobby Parliament to change the law fell largely on deaf ears.³ On the other hand, on March 25, 1998, MPs overwhelmingly rejected a motion by Svend Robinson calling on the government to create its own special committee to "review the provisions of the Criminal Code dealing with euthanasia and physician-assisted suicide."⁴

On June 6, 2000, a Senate subcommittee released a five-year "update" on caring for the terminally ill. This time, there was no suggestion that people who murdered out of love or compassion deserved a lighter sentence. Instead, it addressed solely the urgent need to enhance "quality" end-of-life care. It estimated that thanks to government inaction, about 90% of those who need palliative care are denied it.⁵

Yet surveys consistently show strong support among Canadians for some form of legalized euthanasia. An Angus Reid Group poll released in November 1997 found that 76% agreed with giving the terminally ill the legal right to die at a time of their choosing. These results were virtually unchanged from a survey done four years earlier.⁶ A month later, a Pollara survey found 70% of Canadians believed physician-assisted suicide would be "acceptable in some circumstances," while 60% said it should be legalized.⁷

However, among those most personally affected -- the doctors and the terminally ill -- their views on the subject are not nearly as firm. A national survey of 2,010 physicians published last year revealed some mixed feelings on assisted suicide. While 47% agreed that it should be legalized, 57% said they would refuse to practice it personally. Even fewer said they would "accept" an assisted death either for themselves (40%) or for themselves and their close relatives (38%).⁸ (But as the experience with abortion has shown, it would only take a few doctors willing to practice euthanasia for many deaths to occur.)

A new study of 70 terminal cancer patients in Ottawa uncovered a similar ambivalence. While 73% said they supported legalizing euthanasia or physician-assisted suicide, only 58% said they "might personally make a future request for a hastened death . . . ."⁹ An earlier study of 168 terminal cancer patients in Winnipeg found that in fact their will to live could fluctuate wildly in the space of 12 hours, depending on their level of distress.¹⁰

As the average age of Canadians continues to rise -- placing an ever greater strain on healthcare services and budgets -- there is little doubt that legalized euthanasia or assisted suicide will be seen by some as a "solution" to the problem. The debate may be dormant for now, but it will not go away.

In fact, the Supreme Court of Canada could address the subject when it hands down its decision in the Latimer case, expected in the next few months. Robert Latimer has twice been found guilty of second-degree murder in the October 1993 death of his severely handicapped 12-year-old daughter, Tracy. All along Latimer has maintained that he killed her out of love, because there was no other way to end her pain and suffering.

" The prohibition [on assisted suicide] relates to the state's
interest in protecting the vulnerable and is reflective of
fundamental values at play in our society."

One issue for the Supreme Court is the two year sentence the judge handed him at the conclusion of his second trial in November 1997, on grounds that anything more would be "cruel and unusual punishment." Disabled-rights groups and pro lifers fear that if this sentence is allowed to stand, the life of every handicapped person in Canada will be at risk.

And if "mercy killing" for the disabled were ever to become accepted practice, who would be next? Would "compassionate death" for the elderly, the mentally ill, the depressed -- indeed, ultimately anyone -- be far behind?

Frank Stirk is managing editor of Focus on the Family Canada Citizen. Reprinted with permission.

In Search of a Good Death A new Senate report warns we are not providing dying Canadians with consistent and effective care

Imagine you’re diagnosed with a terminal illness. If you’re like most Canadians, your first response is, "Do I really want to think about this?"

None of us like to ponder dying and its inevitability. Also, if you’re like most Canadians, you probably assume that when your time comes, good end-of-life care will somehow accompany you as a matter of due course.

But according to the report tabled last month by the Senate Social Affairs Subcommittee, Quality End-of-Life Care: The Right of Every Canadian, you’d better not count on it.

"In the five years since [the first Senate report] we have made little progress in the area of quality end-of-life care." Senator Sharon Carstairs, the Senate subcommittee chair, has said. Canadians are still dying in needless pain and without adequare palliative care."

Death itself seems indifferent to our lack of preparedness for its arrival. More than 220,000 Canadians die each year, 75 per cent of them in hospitals and long-term care facilities. But perhaps the most startling fact is that only an estimated 5 per cent will receive integrated, interdisciplinary palliative careC that is, care aimed at lessening physical, emotional, psychosocial, and spiritual suffering —rather than care that targets cure.

Since the Senate’s last report, the number of institutional palliative-care beds across the country has actually fallen as result of health-care restructuring. Few provinces have designated palliative care as a core service with a specific budget.

I'm a psychiatrist and end-of-life care researcher working in a Winnipeg palliative care unit. I am constantly in awe of my clinical colleagues and their incredible ability to alleviate pain and suffering in patients nearing death. I’ve often seen them sit at the bedside of someone in a pain crisis and not leave that patient’s side until the crisis has passed. For them, attending to the dying is not an occasional or reluctantly undertaken task, and their successful management of patients’ suffering is measured not in days of life endured, but rather quality of life lived. Their skill, knowledge and therapeutic effectiveness always leaves me feeling humbled. I know that suffering can often be diminished by appropriate care.

I recall one cancer patient, a woman in her 40s, who told us she wanted to die because of her unbearable pain. After our team managed to get her pain under control, she was able to live her last days at her family ranch, near her beloved horses. She told us about the intense joy of sitting on her back deck, drinking coffee and basking in sunlight. There are hundreds of similar stories; what’s terrifying is that the majority of them are not like this.

What’s the likelihood of getting this kind of expert care? How skilled are your health-care providers at managing symptoms of pain and discomfort? How aware are they of different therapeutic techniques, or of advances and multidisciplinary approaches?

According to the Senate report, there’s no consistency in whether undergraduate medical students receive any palliative care education whatsoever. Few postgraduate medical programs have made palliative care rotations mandatory and teaching is inconsistent. As for continuing medical education, there are some (largely underfunded) palliative-care programs, but the initiative to enroll in them is left to individual discretion. The Senate report urges that training and education of all professionals involved in end-of-life care should be made a priority.

Holes in the home-care safety net may force some terminally ill patients to check into hospital, where they may die in unfamiliar surroundings. We don’t make home care easy enough. If someone you love is dying, and you need to take time away from work, do you have any assurances that your income will be protected, or that your job will remain secure in your absence? While provincial health plans pay for selected aspects of home-based palliative care, these plans don't always include the cost of drugs and equipment, such as pumps for pain medication, oxygen, and commodes. To care for patients at home, you may need private insurance, personal savings, or contributions from social agencies and service clubs to cover costs.

Women, in particular, often shoulder the major portion of care, and make tremendous sacrifices to attend their dying parents, in-laws and siblings. But what we're asking of them is to be superhuman. We should support them by funding drug coverage, and professional and non-professional care services such as home nurses. Ottawa should offer income security and job protection for family members who care for the dying. We should have in place 24-hour pain-management teams and support for families, such as respite care and bereavement counselling.

Like every other area of medicine, developing good quality end-of-life care requires research and knowledge based on carefully conducted studies. Yet despite the fact that we all die, there’s a disturbing lack of research in Canada in this area, such as research into the effectiveness of medical and non-medical interventions and measures of appropriate, cost-effective, health-care services. We’ll need to fund more research on dying if we want to make the best, must cost-effective decisions about care for the dying. And for their families.

Not long ago I worked with a terminally ill man who had clinical depression: What was the point of living another day? After I treated his depression he was able to enjoy his remaining days with his wife of 50 years. Good palliative care benefits not only the patients, it has a ripple effect for those near to them.

Life is most vulnerable at its beginning and its ending. Sadly, the Senate report reads like an indictment of how little has been done to meet the needs of Canadians nearing death. Clearly, Ottawa and the provinces should act now to develop a national strategy for end-of-life care.

Yes, it may cost money, but as Senator Carstairs puts it, "As Canadians, we will afford what we value." We can’t afford to ignore end-of-life care: Some day each of us will need it.

Dr. Harvey Chochinov, a witness at the Senate Committee hearings in 1995 and again in 2000, is a Professor of Psychiatry and Family Medicine at the University of Manitoba, and a Soros Faculty Scholar, Project on Death in America. He chairs the research committee of the Canadian Palliative Care Association.

The June 2000 Senate Subcommittee Report QUALITY END-OF-LIFE CARE: THE RIGHT OF EVERY CANADIAN is available on-line at: