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Sometime in the next few weeks, Karen Nicole Smith will decide her time has come.
Smith, 44, has been on dialysis since 2009. Last year, she learned she has a rare cardiac cancer and decided against treatment. When she decides to die — as she will soon, she says — Smith will simply stop hooking herself up to her home dialysis machine, a process that takes about five hours every two days. Her death will take between three days and a couple of weeks, but she will die, peacefully, and there’s no authority to tell her she can’t do it.
As debate simmers about newly legalized medical assisted dying, Smith knows she is side-stepping the arguments and the bureaucracy in a way many cannot.
It is not considered suicide to stop dialysis treatment, merely a decision that will lead to death.
“I think it’s unfair. I have this clear, well-documented choice,” Smith says. “People withdraw from dialysis every day. I know exactly what I can expect. It’s legal. What if I didn’t have this option? Would I be stockpiling sleeping pills?”
Karen Smith says she’s ready and comfortable with her decision to let her life end.
Ian MacAlpine /The Kingston Whig-Standard
As of Friday morning, 89 people in Ontario have opted for assisted death since it became a legal option, according to figures from this province’s chief coroner. About 160 physicians and nurse practitioners have indicated to the province that they’re willing to perform medically assisted dying through the Clinician Referral Service. (There are about 34,000 active physicians and 3,000 nurse practitioners in Ontario.) There are likely others who willing to assess and perform assisted death, but they are known only to physicians working through their own networks.
Related
“It’s very early days. Everyone is grappling with what this is going to look like — and where and who and how,” says Vanessa Gruben, a University of Ottawa law professor who teaches a course on access to health care.
Among those who qualify under the legislation: clear-headed adults whose illnesses will result in a “reasonably foreseeable” death. For the most part, these are people with terminal cancer and those with rapidly progressing diseases such as ALS.
Among those who don’t qualify: children — even competent teenagers — the mentally ill, people with dementia and those with serious but not life-threatening conditions such as multiple sclerosis, spinal stenosis, Parkinson’s and Huntington’s disease.
Among those who may find it difficult to access services: those who live in remote areas and those whose communities are served by faith-based hospitals and health organizations.
Over the past four months, access to assisted dying has been “a quagmire,” says Dr. Gerald Ashe, a Brockville physician who went public after he assisted in the death of J.P. Campbell, a Smiths Falls man with ALS, on July 27. Since then, Ashe says, he has assisted in three more deaths.
Only physicians can access the province’s central referral service to find doctors willing to help people die. Patients whose doctors refuse to offer referrals have to work through the grapevine. Ashe said he has received several calls with requests for information from people who are not doctors. One woman, a patient in a nursing home, said physicians in her facility weren’t able to provide information. Another call was from a lawyer looking to for a physician willing to do an assessment of a client who was seeking assisted death.
“It’s like voices calling out in the wilderness. I’ve had calls from Toronto and Ottawa from people who want help, who don’t know how to get it.”
Dr. Gerald Ashe has assisted in four deaths since Canada’s new law passed.
The matter of who gets medical help to die is anything but settled.
On June 27, the British Columbia Civil Liberties Association filed a constitutional challenge with Julia Lamb, a 25-year-old woman with spinal muscular atrophy, a progressive neuro-degenerative disease. Lamb told reporters she has lived a full life, but is terrified she could be trapped in a state of physical and mental suffering that could last for months, years or even decades.
Jennifer Chandler, a law professor at the University of Ottawa says a few things could open the door to people who are not currently included in the legislation. The federal government could amend the legislation — the preamble of the legislation opens that door, stating that it “provides for one or more independent reviews relating to requests by mature minors for medical assistance in dying, to advance requests and to requests where mental illness is the sole underlying medical condition.”
The question could also work its way through the court system. Cases such as the civil liberties association’s constitutional challenge, could start in a lower court. If the group wins the challenge, the federal government could appeal. The process could go all the way to the Supreme Court of Canada, which could take years.
Lee Ann Chapman, a lawyer who works pro-bono with children and their families and a spokeswoman for the Canadian Coalition for the Rights of the Child, has argued that mentally competent children should be included in the legislation. In the Netherlands and Belgium, a child as young as 12 can seek assisted dying with parental consent. Chapman further argues that parental consent should not be required.
“If a 15-year-old is going through their third round of chemo, they know what they’re asking for. This is a question of bodily integrity. This is a question of intolerable suffering. Adults can end it, but not children? It’s paternalism at its worst. It’s intentionally cruel,” she says.
“Somehow we can always pretend that there will be a miracle. That there is some magic fairy dust that will keep all children from death.”
Before the assisted dying legislation was passed in June, Chapman says she fielded a couple of inquiries about assisted dying and children. One was from a parent who wanted to now if they could take their child to the Netherlands. Chapman’s response: perhaps, but you would face prosecution when you return to Canada. Another query came from a 16-year-old with a terminal condition that caused him to choke. The teen didn’t necessarily want assisted death, just to know that it would be there as an option.
“This is not something you can defer, like driving or voting. You’ll be dead,” Chapman says.
Meanwhile Chandler, who teaches courses in mental health law, said it will be interesting to see if a plaintiff comes forward to argue that assisted death should be open to those with mental illness.
“We have a tendency to view mental and physical suffering differently. There’s an idea that it’s less serious, and also to question the capacity of people with mental illness,” she says. “Fear, hopelessness, not wanting to be a burden — these are all psychological things.”
The plaintiff might have to prove that there is such a thing as a rational desire to end one’s own life, and mental suffering would have to be recognized as a form of intolerable suffering. Meanwhile, legal challenges are costly and time-consuming, Chandler says.
“You would need a coalition of people.”
Chapman believes it will be a long time before the age threshold will be challenged in the courts. For one, a gravely ill child plaintiff would likely be dead before the matter gets to court. And any parents who choose to do so would be exposing themselves to a firestorm of attention and scorn.
“I assure you that at some point someone is going to go to the Netherlands before they go to court. What might have to happen is that a special interest group would lead a court case.”
On the other end of the spectrum, some are concerned that they will be pushed into actions against their conscience. An online survey of 1,407 physicians by the Canadian Medical Association released in August 2015 found that 29 per cent would consider providing medical assistance in dying, and 63 per cent would refuse. This might not draw an accurate picture of what physicians really think, given the sample size. There are about 65,000 doctors in Canada.
On Oct. 1, the Coalition for Healthcare and Conscience, an umbrella group that represents three faith-based physician groups, filed an application for a judicial review of a College of Physicians and Surgeons of Ontario requirement that physicians directly refer patients who request assisted death to a practitioner who is willing. The coalition argues that in every other province physicians have a “workaround” for the requirement to directly refer, such as by offering a ministry phone line.
“It’s not just us. Many other doctors don’t want to be morally responsible for this,” says Larry Worthen, a spokesman for the group. “We wouldn’t obstruct patients. We just ask that we not be morally implicated. All doctors want to be there for their patients. For evangelicals, Roman Catholic and Orthodox Jewish doctors, the referral itself is participation in the act. It is morally problematic.”
For some, the unwelcome optics of being associated with helping to to end a life are likewise problematic.
Rick Firth, president and CEO of Hospice Palliative Care Ontario, says assisted death is “not a service that is part of the continuum of hospice palliative care.”
About 7,000 people who receive care every year in Ontario hospices. The province announced in its February budget that it was adding another 20 hospices.
Hospices struggle with the idea of assisted death. Firth says 60 to 70 per cent of Ontario’s 43 hospices are adamant that assisted death will not happen on their premises. While about half of hospice funding comes from government, the remainder comes from donors. Many have had family or friends die in hospice care. Any association with assisted death “could alienate the donor base,” he says. “We’re very concerned.”
Still, Firth knows the question will inevitably come up. Hospices have worked with legal advice to come up with a policy and came up with three scenarios: Some hospices are on the grounds of religious orders, and these may opt to decline to allow assisted death on their premises. If there is a rare case where a patient insists, assisted death may have to be performed elsewhere. In the second case, a hospice may object, but will still allow assisted death to be provided by the patient’s doctors rather than abandon the patient. In the third case, some hospices may choose to allow it.
“Our goal is to help people live to the end of their natural lives. When people get good hospice and palliative care, the desire for assisted death disappears,” Firth says. “In other jurisdictions, people will seek assisted death as Plan B. They won’t go there if they get good palliative care.”
Karen Nicole Smith says doctors have told her it’s hard to tell how long she could live with the cardiac cancer. It could be a month, or a year or 10 years. It is the time-consuming dialysis that she finds draining.
“There is a tediousness,” she says. “It’s like that movie Groundhog Day every day.”
A dialysis machine in Karen Smith’s bedroom.
The numbers on assisted dying so far
89 – Assisted deaths in Ontario since June 17, 2016, as of Friday morning;
80 – Proportion of Canadians who said they supported assisted death for patients who are competent at the time of the request, but not when it is carried out, as long as that person has a diagnosis of a grievous and irremediable medical condition;*
63 – Proportion of Canadian doctors who would refuse to consider providing medical aid in dying if requested by a patient;**
29 – Proportion who said they would provide medical aid in dying;
19 – Proportion of those who would provide medical aid in dying who said they would be willing to help end the life of a patient whose suffering was psychological, not physical;
43 – Proportion who said the patient would not have to have a terminal illness.
* Online Ipsos Reid poll of 2,530 people commissioned by Dying with Dignity Canada and conducted in February 2016
** June and July 2015 online survey of 1,407 doctors conducted by the Canadian Medical Association
jlaucius@postmedia.com
查看原文...
Smith, 44, has been on dialysis since 2009. Last year, she learned she has a rare cardiac cancer and decided against treatment. When she decides to die — as she will soon, she says — Smith will simply stop hooking herself up to her home dialysis machine, a process that takes about five hours every two days. Her death will take between three days and a couple of weeks, but she will die, peacefully, and there’s no authority to tell her she can’t do it.
As debate simmers about newly legalized medical assisted dying, Smith knows she is side-stepping the arguments and the bureaucracy in a way many cannot.
It is not considered suicide to stop dialysis treatment, merely a decision that will lead to death.
“I think it’s unfair. I have this clear, well-documented choice,” Smith says. “People withdraw from dialysis every day. I know exactly what I can expect. It’s legal. What if I didn’t have this option? Would I be stockpiling sleeping pills?”
Karen Smith says she’s ready and comfortable with her decision to let her life end.
Ian MacAlpine /The Kingston Whig-Standard
•
Only about 10 per cent of the Canadian population will die suddenly, through an accident or a medical event such a heart attack. For the rest, it can be a long, often protracted and painful process. Less than four months after medical assistance in dying became law in Canada, patients and health care providers are grappling with the question of why some people get to choose the where and how of their own deaths, while other do not.
As of Friday morning, 89 people in Ontario have opted for assisted death since it became a legal option, according to figures from this province’s chief coroner. About 160 physicians and nurse practitioners have indicated to the province that they’re willing to perform medically assisted dying through the Clinician Referral Service. (There are about 34,000 active physicians and 3,000 nurse practitioners in Ontario.) There are likely others who willing to assess and perform assisted death, but they are known only to physicians working through their own networks.
Related
- A 'sacred moment': Brockville doctor talks about why he helps people die
- She helped her dad die on his terms — now she's telling his story
- Choosing to die: 'Even if I had a year or more to live, I wouldn't want that time'
“It’s very early days. Everyone is grappling with what this is going to look like — and where and who and how,” says Vanessa Gruben, a University of Ottawa law professor who teaches a course on access to health care.
Among those who qualify under the legislation: clear-headed adults whose illnesses will result in a “reasonably foreseeable” death. For the most part, these are people with terminal cancer and those with rapidly progressing diseases such as ALS.
Among those who don’t qualify: children — even competent teenagers — the mentally ill, people with dementia and those with serious but not life-threatening conditions such as multiple sclerosis, spinal stenosis, Parkinson’s and Huntington’s disease.
Among those who may find it difficult to access services: those who live in remote areas and those whose communities are served by faith-based hospitals and health organizations.
Over the past four months, access to assisted dying has been “a quagmire,” says Dr. Gerald Ashe, a Brockville physician who went public after he assisted in the death of J.P. Campbell, a Smiths Falls man with ALS, on July 27. Since then, Ashe says, he has assisted in three more deaths.
Only physicians can access the province’s central referral service to find doctors willing to help people die. Patients whose doctors refuse to offer referrals have to work through the grapevine. Ashe said he has received several calls with requests for information from people who are not doctors. One woman, a patient in a nursing home, said physicians in her facility weren’t able to provide information. Another call was from a lawyer looking to for a physician willing to do an assessment of a client who was seeking assisted death.
“It’s like voices calling out in the wilderness. I’ve had calls from Toronto and Ottawa from people who want help, who don’t know how to get it.”
Dr. Gerald Ashe has assisted in four deaths since Canada’s new law passed.
The matter of who gets medical help to die is anything but settled.
On June 27, the British Columbia Civil Liberties Association filed a constitutional challenge with Julia Lamb, a 25-year-old woman with spinal muscular atrophy, a progressive neuro-degenerative disease. Lamb told reporters she has lived a full life, but is terrified she could be trapped in a state of physical and mental suffering that could last for months, years or even decades.
Jennifer Chandler, a law professor at the University of Ottawa says a few things could open the door to people who are not currently included in the legislation. The federal government could amend the legislation — the preamble of the legislation opens that door, stating that it “provides for one or more independent reviews relating to requests by mature minors for medical assistance in dying, to advance requests and to requests where mental illness is the sole underlying medical condition.”
The question could also work its way through the court system. Cases such as the civil liberties association’s constitutional challenge, could start in a lower court. If the group wins the challenge, the federal government could appeal. The process could go all the way to the Supreme Court of Canada, which could take years.
Lee Ann Chapman, a lawyer who works pro-bono with children and their families and a spokeswoman for the Canadian Coalition for the Rights of the Child, has argued that mentally competent children should be included in the legislation. In the Netherlands and Belgium, a child as young as 12 can seek assisted dying with parental consent. Chapman further argues that parental consent should not be required.
“If a 15-year-old is going through their third round of chemo, they know what they’re asking for. This is a question of bodily integrity. This is a question of intolerable suffering. Adults can end it, but not children? It’s paternalism at its worst. It’s intentionally cruel,” she says.
“Somehow we can always pretend that there will be a miracle. That there is some magic fairy dust that will keep all children from death.”
Before the assisted dying legislation was passed in June, Chapman says she fielded a couple of inquiries about assisted dying and children. One was from a parent who wanted to now if they could take their child to the Netherlands. Chapman’s response: perhaps, but you would face prosecution when you return to Canada. Another query came from a 16-year-old with a terminal condition that caused him to choke. The teen didn’t necessarily want assisted death, just to know that it would be there as an option.
“This is not something you can defer, like driving or voting. You’ll be dead,” Chapman says.
Meanwhile Chandler, who teaches courses in mental health law, said it will be interesting to see if a plaintiff comes forward to argue that assisted death should be open to those with mental illness.
“We have a tendency to view mental and physical suffering differently. There’s an idea that it’s less serious, and also to question the capacity of people with mental illness,” she says. “Fear, hopelessness, not wanting to be a burden — these are all psychological things.”
The plaintiff might have to prove that there is such a thing as a rational desire to end one’s own life, and mental suffering would have to be recognized as a form of intolerable suffering. Meanwhile, legal challenges are costly and time-consuming, Chandler says.
“You would need a coalition of people.”
Chapman believes it will be a long time before the age threshold will be challenged in the courts. For one, a gravely ill child plaintiff would likely be dead before the matter gets to court. And any parents who choose to do so would be exposing themselves to a firestorm of attention and scorn.
“I assure you that at some point someone is going to go to the Netherlands before they go to court. What might have to happen is that a special interest group would lead a court case.”
•
On the other end of the spectrum, some are concerned that they will be pushed into actions against their conscience. An online survey of 1,407 physicians by the Canadian Medical Association released in August 2015 found that 29 per cent would consider providing medical assistance in dying, and 63 per cent would refuse. This might not draw an accurate picture of what physicians really think, given the sample size. There are about 65,000 doctors in Canada.
On Oct. 1, the Coalition for Healthcare and Conscience, an umbrella group that represents three faith-based physician groups, filed an application for a judicial review of a College of Physicians and Surgeons of Ontario requirement that physicians directly refer patients who request assisted death to a practitioner who is willing. The coalition argues that in every other province physicians have a “workaround” for the requirement to directly refer, such as by offering a ministry phone line.
“It’s not just us. Many other doctors don’t want to be morally responsible for this,” says Larry Worthen, a spokesman for the group. “We wouldn’t obstruct patients. We just ask that we not be morally implicated. All doctors want to be there for their patients. For evangelicals, Roman Catholic and Orthodox Jewish doctors, the referral itself is participation in the act. It is morally problematic.”
For some, the unwelcome optics of being associated with helping to to end a life are likewise problematic.
Rick Firth, president and CEO of Hospice Palliative Care Ontario, says assisted death is “not a service that is part of the continuum of hospice palliative care.”
About 7,000 people who receive care every year in Ontario hospices. The province announced in its February budget that it was adding another 20 hospices.
Hospices struggle with the idea of assisted death. Firth says 60 to 70 per cent of Ontario’s 43 hospices are adamant that assisted death will not happen on their premises. While about half of hospice funding comes from government, the remainder comes from donors. Many have had family or friends die in hospice care. Any association with assisted death “could alienate the donor base,” he says. “We’re very concerned.”
Still, Firth knows the question will inevitably come up. Hospices have worked with legal advice to come up with a policy and came up with three scenarios: Some hospices are on the grounds of religious orders, and these may opt to decline to allow assisted death on their premises. If there is a rare case where a patient insists, assisted death may have to be performed elsewhere. In the second case, a hospice may object, but will still allow assisted death to be provided by the patient’s doctors rather than abandon the patient. In the third case, some hospices may choose to allow it.
“Our goal is to help people live to the end of their natural lives. When people get good hospice and palliative care, the desire for assisted death disappears,” Firth says. “In other jurisdictions, people will seek assisted death as Plan B. They won’t go there if they get good palliative care.”
Karen Nicole Smith says doctors have told her it’s hard to tell how long she could live with the cardiac cancer. It could be a month, or a year or 10 years. It is the time-consuming dialysis that she finds draining.
“There is a tediousness,” she says. “It’s like that movie Groundhog Day every day.”
A dialysis machine in Karen Smith’s bedroom.
The numbers on assisted dying so far
89 – Assisted deaths in Ontario since June 17, 2016, as of Friday morning;
80 – Proportion of Canadians who said they supported assisted death for patients who are competent at the time of the request, but not when it is carried out, as long as that person has a diagnosis of a grievous and irremediable medical condition;*
63 – Proportion of Canadian doctors who would refuse to consider providing medical aid in dying if requested by a patient;**
29 – Proportion who said they would provide medical aid in dying;
19 – Proportion of those who would provide medical aid in dying who said they would be willing to help end the life of a patient whose suffering was psychological, not physical;
43 – Proportion who said the patient would not have to have a terminal illness.
* Online Ipsos Reid poll of 2,530 people commissioned by Dying with Dignity Canada and conducted in February 2016
** June and July 2015 online survey of 1,407 doctors conducted by the Canadian Medical Association
jlaucius@postmedia.com
查看原文...
