Personal Health Navigator

Some patients face barriers accessing assisted death

Holding hands
Written by Paul Taylor

QUESTION: My father has terminal cancer and he asked his family doctor about having an assisted death. But his doctor seems not very knowledgeable about the process and hesitant to do it.  Are other patients having similar problems?

ANSWER: Although it is hard to get a clear picture of what is happening across Canada, anecdotal reports suggest that access to Medical Assistance in Dying (MAID) has been inconsistent since the federal government passed the law in June that established the criteria for its use.

“It really does vary from province to province, and within provinces it varies depending on how ready the local health community is for these kinds of requests,” says Shanaaz Gokool, CEO of the advocacy group Dying With Dignity Canada.

Many hospitals have developed procedures to handle the requests that come from patients under their care, including putting together internal lists of physicians willing to take part in MAID, says Sally Bean, a policy advisor and ethicist at Sunnybrook Health Sciences Centre.

However, Catholic hospitals and health-care institutions have essentially opted out of MAID, citing their objection to assisted death on religious grounds.

In Ontario, the body that regulates the medical profession, the College of Physicians and Surgeons, has said that doctors must make an effective referral to another health-care provider if they are unwilling to be involved. Yet that position is being challenged in court by a group of Christian doctors who argue that just making a referral is morally equivalent to participating in an assisted death.

Meanwhile, doctors in the community are still in need of more guidance to carry out what amounts to a new and demanding responsibility.

“It’s a complicated area and family physicians want to get it right,” says Dr. Sarah Newbery, president of the Ontario College of Family Physicians. “There is a desire to have some robust clinical materials that they can use to make sure that they are doing this in the right way for their patients who want to access MAID.”

So, clearly there have been challenges rolling out MAID in the initial months. Some of those difficulties have been reflected in the experiences of Dr. Eliseo Orrantia, a family physician who practices in the northern Ontario town of Marathon, located on the shores of Lake Superior.

Dr. Orrantia volunteered to be on a list of Ontario health-care providers willing to accept MAID referrals. (Ontario doctors and nurse practitioners who want to use the referral service can phone a support line operated by the province.)

He was tapped twice in July to lend a hand.

The first case involved a Sudbury-area woman and it unfolded successfully. Using video conferencing, set up through the Ontario Telemedicine Network, he provided the second assessment that determined the patient was eligible for MAID – she had a ‘grievous and irremediable medical condition and natural death was reasonably foreseeable’.  (The patient’s palliative-care doctor had done the first assessment – two independent assessments are needed to meet the requirements of the law.)

Dr. Orrantia also ordered the prescription for the lethal dose of medication.  He explained how to take the medication and the patient was able to end her life at the time of her own choosing.

However, the second case – involving a patient in the southern Ontario town of Cayuga – was fraught with problems. A nurse practitioner had done the first assessment and concluded that the patient was eligible for MAID.  But, before she could provide her opinion officially, she needed the approval of her employer, the local Community Care Access Centre. “The administration held a number of meetings to decide whether they would let a member of their staff provide that opinion – even though it was within the nurse practitioner’s scope of practice as a professional,” explained Dr. Orrantia.

To make matters worse, Dr. Orrantia couldn’t find a pharmacy that would supply the medication. He contacted five pharmacies before coming across a pharmacist willing to do so. But the pharmacist was an employee, not the owner of the drug store.  “The owner denied him permission to provide the medication,” says Dr. Orrantia.

As Dr. Orrantia dealt with one delay after another, the patient’s condition steadily deteriorated. Eventually, the patient lost the mental capacity to give informed consent. That meant he no longer qualified for MAID. Patients must be mentally competent up to the moment before they get the lethal dose.

“I was really disappointed that we were unable to provide MAID to the patient,” says Dr. Orrantia. “If we say we have this service, then let’s make sure it is available to people who want it.”

Others expect that the barriers to assisted death will diminish once the procedure becomes a regular part of medical practice. “There is a knowledge gap now and that will change in time,” says Ms. Bean.

The Centre for Effective Practice, with funding from the Ontario Ministry of Health and Long-Term Care, is in the process of developing a step-by-step guide that explains what doctors and nurse practitioners need to consider if a patient requests an assisted death. “It is a comprehensive resource based on the information we have at this time,” says Lena Salach, director of the non-profit group.

Nonetheless, many health-care professionals – particularly those involved in palliative care – still have misgivings about playing an active role in hastening a patient’s death.

After all, palliative-care providers have traditionally focused on easing pain and suffering so that patients can have what might be called “a good death” naturally, explains Dr. Irene Ying, a palliative care physician at Sunnybrook.

Dr. Ying and many of her colleagues hope that the public discussion about death and dying will lead to additional resources for palliative care, which is also hard to access in many parts of Canada.

So, what should patients do if they sense a health-care provider is reluctant to administer MAID? That depends on where they live.

In Alberta, for instance, the patient or a family member can send an email directly to the provincial team that is handling requests for assisted deaths – MAID.careteam@ahs.ca.

In most other parts of the country, patients usually need to get a referral from their doctor to see other care providers who are willing to provide MAID.

Doctors are not obligated to perform a medical service that goes against their conscience.  But, the provincial bodies that regulate the medical profession “have set expectations that patients who inquire about medical assistance in dying are not abandoned and physicians must not act as a barrier to access,” says Kathryn Clarke, a spokesperson for the College of Physicians and Surgeons of Ontario.

Ms. Gokool is concerned that some patients may suffer when they are transferred to a medical institution willing to provide MAID services from a faith-based facility that has opted out. “We are talking about people who are frail and vulnerable,” she says. “If you are in a hospice, or a long-term care facility, that is your home. There is a lot of harm being done moving people back and forth.

It appears that much work still needs to be done to resolve these issues. “Somehow we need to find a balance between being patient-centred in our approach and honouring those who are conscientious objectors,”
 says Dr. Newbery.

She also points out that every effort should be made to ensure that patients who are considering the MAID option continue to receive the best possible medical attention.

“I fear that there will be gaps for a patient, if a physician interprets a referral for medical assistance in dying to be a transfer of care,” she says.  The patients’ doctors, she adds, should “still be responsible for managing everything else about their care, prescribing their medications, alleviating their suffering and supporting them.”

Many patients, she notes, will likely ask for information about medically assisted death, but only a small minority will end up choosing to have it carried out.

About the author

Paul Taylor

Paul Taylor, Sunnybrook’s Patient Navigation Advisor, provides advice and answers questions from patients and their families, relying heavily on medical and health experts. Email your questions to AskPaul@sunnybrook.ca
and follow me on Twitter @epaultaylor