Donation guidelines start needed conversation

Special to Western NewsSchulich School of Medicine and Dentistry professor Ian Ball was part of a published article in the New England Journal of Medicine that raises ethical questions and challenges for organ donation in cases where a patient has elected Medical Assistance in Dying (MAiD), also known as voluntary euthanasia.

Three years after its legalization, medical assistance in dying – known as MAiD – remains a murky subject for health-care providers and patients to navigate. However, some of that confusion has been gaining clarity in recent weeks thanks to new guidelines regarding organ donation for patients opting to end their lives.

It’s the start of a conversation we are long overdue in having, according to Ian Ball, a Schulich School of Medicine & Dentistry professor and an expert in critical-care medicine.

In February 2015, the Supreme Court of Canada ruled in Carter v. Canada that parts of the Criminal Code prohibiting medical assistance in dying would need to change to satisfy the Canadian Charter of Rights and Freedoms. In June 2016, the Parliament of Canada passed federal legislation that allows eligible Canadian adults to request medical assistance in dying.

MAiD allows patients 18 years or older who are capable of making health-care decisions and have a grievous and irremediable medical condition to obtain a physician-assisted suicide (in which lethal medications are prescribed by the physician and administered by the patient) or voluntary euthanasia (in which lethal medications are administered by the physician).

This legal clarity, however, has not meant the end of the discussion. In fact, in many ways, the conversation is just beginning.

“People tend to resist and change or anything new,” Ball said. “There are still people opposed to it – and that is up to them. Everyone is entitled to their own beliefs. But what does surprise me, though, is there is still a significant percentage of the population who are not aware this is even an option. That blows my mind.

“It’s a doctor’s obligation to offer medical assistance in dying. Even if they don’t necessarily agree with it, offer it as a therapeutic option. If someone says they are totally opposed to medical assistance in dying, you say, ‘OK, understood, I’m sorry I brought it up, but it’s important you understand all your options.’ I don’t think it’s appropriate to never even mention it.”

Soon as the legislation passed, patients started asking about organ donation when they opt for MAiD. Caught somewhat off guard, Canadian health-care professionals requested guidance.

“When MAiD became legal there was not a lot of guidance from federal or provincial governments, and there was a huge stigma at the time,” Ball said. “People (doctors) were doing this secretly, including me, because we were worried about what the public perception would be. The last thing you’re going to do is tell somebody, through a medical journal or talk about this in the doctors’ lounge, so no one knew what everyone else was doing. It was different from doctor to doctor.”

In response to the confusion, Canadian Blood Services worked in consultation with the Canadian Neurological Sciences Federation, Canadian Critical Care Society, Canadian Society of Transplantation, and Canadian Association of Critical Care Nurses to develop ethical, legal and clinical guidance for policies about managing deceased organ donation in conscious, competent donors.

Last month, those guidelines were published in the Canadian Medical Association Journal.

Among the panel’s recommendations:

  • The decision whether to have medical assistance in dying or withdrawal of life-sustaining measures must occur before any discussion of organ donation. This mitigates the risk that the desire to donate organs would influence the type of end-of-life care that the patient requests;
  • Medically suitable, conscious, competent patients who provide first-person consent to end-of-life procedures should be given the opportunity to donate organs and tissues;
  • The patient must be able to provide first-person consent and be able to withdraw consent for medical assistance in dying or donation at any time;
  • Physicians, transplant teams and other staff should try to minimize the impact and disruption of donating, such as testing, for the patient;
  • The ‘dead donor rule’ must be respected, meaning vital organs can only be removed from deceased donors after determination of death according to accepted criteria; and
  • Health-care professionals may choose not to participate in medical assistance in dying or withdrawal of life-sustaining measures. But they should work to support the patient’s wishes to donate.

“The Canadian Blood Services guidelines are a positive way of acknowledging national support for MAiD patients who want to be organ donors, for standardizing the approach to this practice and for highlighting the need for future research and quality improvement in this area that is still in its infancy in Canada,” said Ball, who became involved with the medical assistance in dying program at London Health Sciences Centre because of his donation work.

“We still need to improve access to MAiD for patients and have a better understanding of current national practices in order to inform future research that will improve patient care. It may also be important to ensure we are taking care of providers’ mental health, as well.”

Ball noted of the 3,000 or so medical assistance in dying deaths so far in Canada, about 30 have made organ donations. Three of those were in London.

These guidelines are just the opening of a longer conversation, Ball stressed.

Last year, Ball published a paper in the New England Journal of Medicine introducing the idea if organs could, or should, be removed from the medical assistance in dying patient before they die. In it, he and his co-authors suggested there should be separate clinical protocols in place for donors who choose medical assistance in dying in order to allow their organs to be preserved in the best possible way for donation.

“It’s something we need to talk about,” Ball said. “I’m not advocating we’re ready for that or should move to that. I am suggesting we need to reconsider. Out of convenience, we’ve lumped medical assistance in dying donations into the after cardiac death process – but they’re different. In the context of medical assistance in dying, I wonder if we should be a little more flexible? This was all done before medical assistance in dying was legal.

“They (federal government) would need to change legislation – not a small thing. The question would be, ‘Is this what the patient wants?’ You need to respect the morals and ethics of people on the health-care teams. Some won’t participate in medical assistance in dying, as it is, and we need to respect that.”