Palliative care is an option

  • August 6, 2009
{mosimage}Michele Chaban doesn’t want the option of asking her doctor to kill her, but she thinks she’s probably going to get it.

Chaban is one of Canada’s leading experts on how we die and the care we provide to the dying. She counsels dying patients and their families and teaches the subject at the University of Toronto and the University of Wales. She has also lived with a spinal cord injury for 26 years.

“I get scared sometimes that somebody is going to say, ‘Well, you’re not really a helpful member of society, and you’re not producing anything, and so we don’t need you any more,’ ” Chaban told The Catholic Register.

Chaban’s fear that legalized euthanasia will create subtle pressure for the disabled and elderly to bow out of life will likely be aired over and over in the coming debate over Bill C-384, a private member’s bill that would remove physician-assisted suicide from Canada’s criminal code. It could come before Parliament as early as this fall.

Even if Canada had adequate, accessible palliative and hospice care, better palliative care wouldn’t mean an end to patients asking for euthanasia or doctors who sincerely believe their patients need the option, said Chaban.

“The request for euthanasia is because people feel that science is pushing the limits of humanness and stretching humanness out over a canvas that’s just causing more suffering,” she said.

Whether it’s C-384 or some other future legislation, Chaban thinks it’s probable Canadians will want the law to acknowledge that sometimes an unnaturally extended life needs a quick, painless end.

Hospice and palliative care might be an option that provides for a good death — an option that would make actively seeking death less attractive. But that’s a theoretical argument. In practice, most Canadians don’t get that kind of end-of-life care.

In Canada, 260,000 of us die every year. By 2020 that number is expected to rise to 330,000. According to the 2000 Senate report “Quality End-of-Life Care: The Right of Every Canadian,” only 15 per cent of Canadians who require palliative care can get it. The Canadian Hospice Palliative Care Association reports there are slightly more than 200 qualified palliative care physicians in the country. That’s one doctor for every 1,300 patients who will die this year. By 2020 it will be one qualified doctor for every 1,650 dying Canadians.

Real palliative care requires more than physicians. It needs nurses, social workers, psychologists and chaplains equipped to work with patients, their families and communities. Those kinds of teams are rare, particularly outside Canada’s largest cities. Certification for hospice palliative care nurses was first offered in 2004.

Ontario came up with an end-of-life care strategy in 2008. It gives $70,000 a year to each of the province’s 14 Local Health Integration Networks to support work in palliative care.

“The majority of (health care) services are actually provided to people at the end of their lives, and yet the system only got funded with $70,000? That’s ridiculous,” one nurse told The Catholic Register.

The Catholic Organization for Life and Family, the pro-life arm of the Canadian Conference of Catholic Bishops, has lobbied for more serious government spending on palliative care as a better answer to attenuated suffering by dying patients.

“Although palliative care cannot eliminate all suffering in all cases, it is an excellent way of affirming the life of the person who is dying. This is what is meant by death with dignity,” said COLF in a 2007 Workshop on Euthanasia and Assisted Suicide. “We need to encourage governments to devote more resources towards palliative care in hospitals, homes and hospices and for the education of health professionals and the public about palliative care.”

“Have we societally done what we can to promote this very important field?” asks Ontario Palliative Care Association president Chris Sherwood. “The answer to that is unequivocally no.”

Too many people go through years of mystifying medical procedures and iatrogenic suffering.

“Iatrogenic suffering is how the system thinks it is delivering health care to people, but without intention they are inducing a state of suffering for people. It happens a lot,” explained Chaban. “It happens because people enter into the culture of health science and are cheer-led into survivorship.”

While the debate is often framed as a question of patient choice, many palliative care professionals question whether patients and families are presented with all the options before the patient enters a suspended state of near-permanent suffering. It’s difficult for a doctor to present the option not to treat a progressive, life-limiting condition. What doctor wants to be accused of waging less than total war against death?

“That’s the primary value in medical care. Like, death as an outcome is a very poor outcome,” said Chaban.

But Chaban warns against demonizing doctors or making simplistic pronouncements about a natural lifespan and a natural death. Medical science has extended her life dramatically. From the moment we receive our first vaccinations, everyone in the industrialized world sees their lifespans extended beyond natural and historic norms by technology.

We can’t just outlaw euthanasia and feel good about it. As a society we have to deal with how people suffer, she said.

Chaban’s research has found that almost 95 per cent of people who say they want to die are not concerned about their own suffering so much as they are worried about the effect their suffering is having on family and caregivers.

“They said they wanted to die because their family members were suffering too much, and the reason they were suffering was because of the care-giving responsibilities,” said Chaban.

Not only does palliative care in Canada rely disproportionately on family members to deliver care, it relies on the dying to finance it.

“When you have to rely on somebody giving a funeral donation in order for you to be able to fund your next case, that’s economics, it’s health care economics,” said Chaban. 

Chaban wants a more sophisticated debate than one that boils down to “euthanasia bad, palliative care good.”

“It’s important we stop fighting and we have dialogues and we bring this last piece of death out of the closet so that people really understand what they’re voting for,” she said.

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