Making peace with mortality – delving into Medical Assistance in Dying

LETHBRIDGE —  Many patients are very close to death already by the time they start looking for information about Medical Assistance in Dying (MAID). Others, upon learning they have a terminal illness, make inquiries at the outset to determine what options they have nearer to the end.

Men and women who choose this route all have one thing in common — a terminal illness. They are or will be suffering, depleted and in pain. And, while they understand the inevitability of their death, they would prefer to have it happen on their own terms.

In the South Zone of Alberta Health Services (AHS), the first point of contact in the MAID process is Navigator Rachel McGean, who can be reached through an e-mail address on the AHS MAID website. People can also make the request by calling Health Link (811), through the Palliative Care team or through their physician.

“It’s my role to walk you through the process,” says McGean, a Registered Nurse. “I would meet with you and provide you with a package of information that allows you to be able to make an informed decision. We also want to know if there are any vulnerabilities. Who’s asking for this? Is it you, is it your spouse, is it a family member? What brought you to this point today? What other treatments have you sought? Have you had the opportunity for a palliative consultant to meet with you? Have you had symptom management? What has been your journey to date?

“We don’t want people picking this as their first choice. We want to make sure that they’re aware of all the options. Whether they choose those options is still their choice, but they need to know that they’re there.”

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Next, an official Record of Request is filled out by the patient and signed by two independent witnesses (who are at least 18 years old and cannot benefit from the person’s death in any way). When the request is received, McGean connects with MAID’s medical lead in the zone, Dr. Dionne Walsh. Dr. Walsh arranges for two physician assessments to determine whether the patient’s condition meets the MAID criteria. If the patient meets the MAID criteria, a 10-day reflection period follows.

“This provides an opportunity for people to reflect on what they’re asking for,” McGean says. “They can change their mind about it, any time, right up to the very moment the medications are to be started.”

Once the patient has chosen a day and location, arrangements are made for a providing physician to administer the medications, and for a nurse to assist. If the provision takes place in an AHS facility, an AHS pharmacist will dispense the medications. If it happens in the community, AHS has partnerships with community pharmacies to dispense. The physician provider must pick up the drugs and bring back the empty containers afterward.

Just as patients have the right to choose MAID, AHS policy and the MAID legislation protects the rights of others who are opposed to it (they are called conscientious objectors). MAID cannot be provided in Covenant Health facilities, which are managed by a Catholic organization with religious principles that do not support the concept. If McGean has a request from a patient in a Covenant facility, she arranges for a non-ambulance transfer van to transport them offsite for the provision.

Many patients have chosen to have MAID provided in their home. “That works really well,” McGean explains, “because they have their own comfortable, familiar surroundings and their family all around them.

“The most amazing piece for me, through this whole process, is that when a patient has decided this is what they want, they’ve allowed themselves to be assessed and they are deemed eligible — they are so at peace with their decision. It truly amazes me every time. They do get the opportunity at any time to withdraw from the process, to change their mind, but it’s not happening. I can’t even imagine what it’s taken to bring them to that point, to ask to have their death arranged. They have to be suffering.”

The factors which compel people to seek MAID can be complex and very personal.

“Some people say ‘I don’t want my family to have to make the decision to take me off life support,’ or ‘I don’t want my family to be burdened by my neediness,’” says McGean. “They foresee the level of care accelerating as their disease process moves forward and they don’t want that. We try not to let that be the reason why they’re asking. We will delve into what is bringing them to this decision.

“We often bring Social Work in for support, and they’re very skilled at having those conversations. We have very, very compassionate people in the program who have been in healthcare for a long time. They’ve seen people suffer and now there is an opportunity for patients to have the choice. They don’t have to suffer until the very end; they can guide their death if they fit the criteria.”

McGean’s career has included many years in Seniors Health, and working in and managing an Intensive Care Unit.

“It’s the patient’s response — they’re so, so grateful. It’s heartwarming, yet heart-breaking. When you’ve been called someone’s angel because you’ve come to their rescue, it leaves a mark. You meet families who are so grateful that their loved one got to do things on their terms,” she says.

“At the same time, it’s hard, because there’s a connection that I seem to make with each and every one of them. As an ICU nurse, I’m used to being around dying and critical care, and grieving families of the dying. I was always able to maintain a certain distance from it. I find that I’m not able to maintain the same distance in this role as I had in the ICU. It’s hard not to get attached to these patients; each one is special.”

She is mindful of the importance of self-care. “I have a wonderful husband who travels with me and I have him for support. I have grandchildren, and being with them removes me from everything. And I have a wonderful team, and they help keep it real for me.”

MAID began June 17, 2016 in Alberta. Nine patients in the South Zone chose MAID in the first year. From January through December in 2017 there were 21 patients — and up to November of 2018, there have been 36.

There are seven Physician Providers in the zone, and McGean says there’s a need for more.

“We try our best to accommodate last-minute wishes as far as little things they might want to have,” she says. “Bring in a bottle of champagne. Play music they love. There have been times when that medication is being initiated and Amazing Grace is played.

“I’ve had my share of tears.”