By Samantha Winemaker & Hsien Seow
I met Gerry for the first time in his home. Gerry suffered from a non-curable progressive lung condition. For the past year, he was becoming increasingly breathless and was desperately hoping for a lung transplant. When he was told he was ineligible, his disease was already at an advanced stage. Without the hope of a transplant, he had requested Medical Assistance in Dying (MAID).
MAID is a procedure in which a patient is given medications to intentionally and safely end their life. Since MAID was legalized in Canada in 2016, over 21,000 people have utilized it. In 2020, it was responsible for 2.5 per cent of deaths in Canada. To qualify, an adult must have a “grievous and irremediable medical condition,” meaning they have a serious and incurable illness, disease, or disability; be in an advanced state of irreversible decline in capability; and endure physical or psychological suffering that is intolerable to them and cannot be relieved. The adult must be able to give informed consent during two independent assessments for eligibility done by a nurse practitioner or doctor assessor.
The purpose of my initial meeting with Gerry was to provide his second MAID assessment. I sought to understand his motivation for wanting to die. I asked him what he understood about his illness, his understanding of how things would unfold, and nature of his suffering. He shared with me that he had lived with his disease for over five years already and his breathlessness was getting worse and worse. He assumed his breathlessness would worsen until he would suffocate to death. As I listened, I realized no one had sat with him to review the big picture of his illness and what to expect from the beginning, middle, late, and end stage of his disease.
I spent more than two hours in Gerry’s home that morning. Gerry and his family were surprised to learn there were ways to treat his breathlessness. They were surprised to learn that since he had not experienced pain or nausea, they were very unlikely to suddenly become issues. They were surprised to learn that he would not suffocate to death, if appropriate care was offered. They were surprised to learn of the community supports available to him and his family.
To be clear, I was not trying to change Gerry’s mind. My position on MAID is not relevant. It’s legal and it’s their decision. I simply wanted to ensure that Gerry had full information to make the most consequential decision of his life. Too often I worry that not enough people have this information. As a palliative care doctor, who treats people with life-limiting, progressive diseases, I have specialized training and expertise in having these conversations. The issue however is that we do not have enough palliative care specialists to be solely responsible to demystify dying. More to the point, by the time a person is requesting MAID, their suffering is typically too advanced, and the offer of palliative care feels too little, too late.
Accordingly, I strongly believe all health care providers need to be trained in basic skills of a palliative care approach. All doctors and nurses need to know how to integrate this approach into their skill set. For instance, all health care providers should provide patients and families with information about the big picture of their illness early on, so they can be realistically hopeful and prepared along the entire illness journey. They should become comfortable with discussing what natural dying looks like and demystifying the many misconceptions that patients have about dying. Moreover, palliative care should not be reserved for end of life or as an alternative to MAID. For some people, even with early palliative care, they may still want to pursue MAID.
Gerry’s five-year illness journey was busy with the immediate management of his progressive lung condition. He had many excellent care teams along the way who tried their hardest to slow the illness or ultimately save him with new lungs. However, a major anchoring thread was either missing or buried in the hustle and bustle of his illness. This ultimately left Gerry feeling afloat, scared and desperate.
In the earlier stages of a progressive life-limiting illness, patients should be invited to understand how their storyline and timeline is likely to unfold; what the various stages of the illness will look like; the anticipated hurdles and illness milestones; how to prepare for the illness to change; what natural death does and does not looks like; what supports are and are not available; options for place of death; and the role of palliative care. Only then can someone truly provide informed consent for MAID.