COVER

'Everyone knows it happens'

SHARON DOYLE DRIEDGER March 9 1998
COVER

'Everyone knows it happens'

SHARON DOYLE DRIEDGER March 9 1998

'Everyone knows it happens'

COVER

SHARON DOYLE DRIEDGER

There is still remarkable beauty in Joanna Chan’s face: the almond eyes highlighted by the stroke of eyeliner, the sculpted cheekbones, the rosebud mouth. But when she looks in the mirror, Chan sees a horrible parody of herself, a wraith with skin stretched taut across a bony face, a sallow complexion and parched lips. A living skeleton. “I cannot face myself, all these bones,” she laments. Chan, 42, the mother of two boys, aged 12 and 14, is dying. She has renal cell carcinoma, which has spread to her liver. Her stomach is distended by a huge tumor, like a gruesome mock pregnancy. She can barely walk and can only swallow soft foods. Chan, who once ran a thriving interior design firm, is spending her last days at home. Doctors do not know how much longer she will live and Chan is impatient to get the dying over with. She can barely read any more, but she does try to write in a small journal, her handwriting faint and crabbed by her difficulty holding a pen. “Dear God, allow me, allow me please,” reads one entry. “I am waiting, just waiting, just waiting.”

Until God answers Chan’s prayers, a palliative care team keeps her comfortable with the powerful synthetic painkiller Dilaudid. The law does not allow doctors to play God. Last May, police in Halifax charged physician Nancy Morrison with murder, accusing her of hastening the death of a terminally ill cancer patient by injecting him

with a lethal dose of potassium chloride and nitroglycerine. But last week, in a decision that dismayed disabled rights activists across North America, a Nova Scotia judge dismissed the charge against Morrison. The last people who should be given the authority to help people kill themselves are “those we train to heal,” asserts Woody Osburn, 46, a quadriplegic and founder of Not Dead Yet, an aggressive Ohio-based lobby group. “It endangers anyone with a disability anytime they check into a hospital.”

On the other side of the great debate, right-to-die advocates are campaigning for the decriminalization of euthanasia and physician-assisted suicide—or at least more leniency towards those who help, out of compassion, to end a life. “Under current Canadian law, the act of helping someone to die is treated the same as marching into a corner store and shooting the man behind the counter for a bag of money,” asserts Russel Ogden, a Britishbased expert on the subject. That may be only a mild exaggeration. In Winnipeg, 79-year-old Bert Doerksen faces a charge of assisting in the death of his wife, Susan, 78, whose body was found last November in the family car, inside a garage sealed with duct tape. Saskatchewan farmer Robert Latimer, 44, convicted twice of second-degree murder in the carbon monoxide death in 1993 of his severely disabled daughter, Tracy, 12, has asked for a constitutional exemption from the mandatory life sentence. The Crown is appealing the two-year sentence issued to Latimer last year.

In other separate cases, a surgeon in Timmins, Ont., and a nurse in Toronto both pleaded guilty to reduced charges of administering a noxious substance (potassium chloride) after terminally ill patients died in their care in 1992. One of the most publicized Canadian suicides, of Sue Rodriguez in Saanich, B.C., in 1994, has never reached the courts. Severely disabled by the degenerative nerve disorder ALS, she died after taking substances w provided by a doctor who has never been identified.

8 One young man in Moncton, N.B., in an advanced stage of I AIDS, takes hope from last week’s decision. Daniel, who asks for I anonymity, lives in a province where only three physicians treat g AIDS patients. Bedridden with extreme fatigue and joint pain, his £ emaciated body marked with skin lesions from Kaposi’s sarco-

Taking sides on the right to end life

ma, Daniel has been unable to obtain drugs strong enough to alleviate his suffering. “Doctors in this region are afraid to prescribe or administer potent painkillers, especially in a home setting,” he says. “There is a fear of being reprimanded and the name of Dr. Morrison is often mentioned.” Daniel has survived three bouts of AIDS-related pneumonia, but he has lost interest in living. “I am not depressed,” he insists. “I just feel that the quality of life is more important than the quantity.” Daniel

knows AIDS victims who have jumped off bridges and tried to overdose on drugs. Daniel hopes for the assistance of a compassionate doctor. “But I think in the end I will have to do this on my own,” he says with resignation. “The laws are not there yet. Until then, people like me will suffer and botched suicide attempts will continue.”

In fact, many—on both sides of the argument—believe that assisted suicide is widespread across the country. “Everyone knows it happens a great many times,” says Ruth von Fuchs, who heads the Toronto chapter of the Right to Die Society of Canada. “It is usually done by increasing doses of medicine the person is already getting, such as morphine.” That may be the case in hospitals, where three out of every four Canadians die. But Ogden, who conducted a controversial study in 1994 of 34 assisted suicides in the Vancouver AIDS population that took place between 1980 and 1992, found that the underground attempts—using everything from street heroin to insulin—often lead to “very unpleasant” deaths. In one interview, Ogden reports, he learned the details of a botched effort to end a woman’s life with barbiturates—a job that had to be completed by asphyxiation with a plastic bag after she vomited the drugs. He also notes that most of the deaths were induced by non-medical practitioners.

The medical profession, in fact, is not eager to embrace euthanasia. In a Canada-wide survey of 2,010 doctors, which will appear in an upcoming issue of the Canadian Medical Association Journal, Douglas Kinsella, a physician and ethicist at the University of Calgary, found that 21 per cent of physicians would agree to assist in a suicide, about 30 per cent were unsure—and the rest said they would refuse. Physicians in British Columbia and Quebec showed a much more permissive attitude towards euthanasia than their counterparts in other regions. The survey also revealed a

direct correlation between a strong religious involvement and opposition to assisted suicide. The Canadian Medical Association firmly opposes euthanasia. “It is not for us to judge people who choose suicide,” says Dr. John Scott, head of the Ottawa Regional Palliative Care Centre. “But it’s a different thing to ask that the healthcare system offer this as an alternative.”

Specialists in palliative care say the euthanasia movement would wither away if the public had a more realistic view of death. “Most people have never seen a real death, so they assume it is scary, when often it is not,” says Scott. “People would be surprised at how often death is peaceful and gentle—a quiet sleep and, finally, a breath is not taken.”

Ken Howard remembers the final hours of his wife, Mildred, with a wistful joy: “She passed away quietly in my arms last November. She couldn’t talk, but I could understand every word she told me with her eyes. She said, ‘I

love you, but I am tired____Goodbye.’ ” Now, Howard is

facing his own imminent death with equanimity. The 87year-old former retail executive has terminal prostate cancer that has spread to his spine and he is no longer able to walk. “Mildred was my entire life, so what do I have to live for?” asks Howard. Yet he has no interest in hastening his departure. “I’m not trying to rush anything,” he says. “I believe in God’s will.” Before his wife’s death, doctors asked Howard to agree to a “do not resuscitate” order, in the event that her heart failed. But he refused, even though she was so ill she could not speak or even swallow a drop of water. His reasoning: “I don’t think any person has a legitimate right to take anyone’s life.”

Death may be the great leveller. But Canadians do not

have equal access to palliative care. (The term, meaning to treat symptoms, refers primarily to efforts to relieve pain and make dying patients and those close to them more comfortable.) “I’m lucky—if you can call having cancer lucky,” says Howard, who receives round-the-clock support from nurse Nancy Fabro and her team at We Care, a private, national home-care firm. Although Canada is considered a world leader in palliative care—and many major hospitals run model programs—it is not readily available in many smaller centres and rural areas. Many doctors argue that calls for assisted suicide would diminish if access to palliative care was improved. “There is all this emphasis on assisted suicide and nobody pays attention to palliative care, which may in some cases solve the problem,” says Dr. Larry Librach, head of palliative care at Mount Sinai Hospital in Toronto. “Fear of pain, for example, is something that pushes some patients to consider that option.” Checks and balances are built into life-support decisions, notes Dr. Richard Johnston, head of ICU at Royal Alexandra Hospital in Edmonton, because doctors and nurses consult with the family at each stage and try to determine what the patient would want. ‘Written procedures are not necessarily the answer,” he notes, “because the circumstances in each case are wildly different.” If there are disagreements on what to do, most hospitals have bio-ethical review committees. “We don’t give people drugs to die,” he says. We don’t kill them. But we don’t have a problem with discontinuing active therapy.”

Less than five hours after 83-year-old Kay Seaton slipped into a coma in December, physicians at a suburban Toronto hospital told her two sons that, on arrival, she had instructed them to take her off a respirator within 48 hours if she lost consciousness. The deadline would fall on Christmas Day, and the doctors said she had a 10-per-cent chance of survival on her own. “She was semi-conscious and delirious,” recalls her son George, an executive. “I said, ‘Don’t be absurd.’

You don’t kill a grandmother on Christmas Day.” But over her sons’ objection, she was taken off life support, with doctors revising their survival prognosis to 50-50. Fortunately, she regained consciousness three days later. By Jan. 11, she was out of the hospital. The experience “shook the liver and lights out of me,” says Kay Seaton, who has no recollection of giving such an instruction to the doctors. “They should have listened to my sons.”

Other patients tell of being let down by the medical profession’s assurances that pain can be managed. Elaine Thompson was diagnosed with a brain tumor on April 26, 1995—her 37th birthday. Since then, the Calgary woman has not experienced a day without pain—a constant, chronic headache that can flare agonizingly after movement or exertion. Thompson had surgery to remove part of the tumor in June, 1995, but doctors say it will kill her some time—in five, 10, possibly 15 years. “The drugs reduce the pain, but it never goes away,” she says. “Each time I get a new drug and feel better for a while. Maybe I have to learn to be happy with 80 per cent.”

In Toronto, a 72-year-old former social worker named Jean saw her husband die a painful, lingering death in 1987 from stomach cancer and its complications. “He had morphine, but the pain was not always controlled,” she recalls, “and the nausea was difficult.” Now, she insists she wants to make her own decisions about how to die—“I don’t want others to make those decisions for me.” She has told her family she does not want any heroic life-saving procedures, and now, she says, “they have the comfort of knowing they are carrying out my wishes.” No one can avoid death, but many are planning to meet it on their own terms.

JENNIFER HUNTER

NOMI MORRIS

With JENNIFER HUNTER in Vancouver and NOMI MORRIS in Toronto