I first met Gerry at his home. Gerry suffered from an incurable progressive lung disease. For a year, he had been increasingly short of breath and desperately hoping for a lung transplant. When he was told he was ineligible, his illness was already at an advanced stage. Without hope of a transplant, he had asked for medical assistance in dying (MAD).

MAID is a procedure in which a patient is given medication to intentionally and safely end their life. Since MAID was legalized in Canada in 2016, more than 21,000 people have used it. In 2020, it was responsible for 2.5% of deaths in Canada. To qualify, an adult must have a “grievous and irremediable medical condition,” meaning they suffer from a serious and incurable illness, disease or disability; be in an advanced state of irreversible decline in capacity; and endure physical or psychological suffering that is intolerable to them and cannot be alleviated. The adult must be able to give informed consent during two independent eligibility assessments conducted by a nurse practitioner or an assessing physician.

The purpose of my first 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 were going and the nature of his suffering. He confided to me that he had already been living with his disease for more than five years and that his shortness of breath was getting worse and worse. He assumed his shortness of breath would get worse until he choked to death. As I listened, I realized that no one had sat down with him to go over the big picture of his illness and what to expect from the beginning, middle, end and end of his illness.

I spent over two hours at Gerry’s that morning. Gerry and his family were surprised to learn that there were ways to treat his shortness of breath. They were surprised to learn that since he hadn’t felt any pain or nausea, it was very unlikely that they would suddenly become problems. They were surprised to learn that he would not die of suffocation if proper care was given to him. They were surprised to learn of the community supports available to him and his family.

To be clear, I wasn’t trying to change Gerry’s mind. My position on MAID is irrelevant. It’s legal and it’s their decision. I just wanted to make sure Gerry had all the information he needed to make the most important decision of his life. Too often, I fear that too few people have this information. As a palliative care physician, who treats people with progressive, life-limiting illnesses, I have specialized training and expertise to have these conversations. However, the problem is that we don’t have enough palliative care specialists to be solely responsible for demystifying death. More specifically, by the time a person requests MAID, their suffering is generally too advanced and the offer of palliative care seems too little, too late.

Therefore, I strongly believe that all health care providers should be trained in the basic skills of a palliative care approach. All doctors and nurses need to know how to incorporate this approach into their skills. For example, all healthcare providers should provide patients and families with information about the big picture of their illness early on, so they can be realistic and prepared throughout the illness journey. They should feel comfortable discussing what natural death looks like and debunking the many misconceptions patients have about death. Furthermore, palliative care should not be reserved for the 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 has been busy with the immediate management of his progressive lung disease. He had many excellent care teams along the way who did their best to slow down the disease or ultimately save him with new lungs. However, a major anchor thread was missing or buried in the turmoil of his illness. This ultimately left Gerry feeling afloat, scared and hopeless.

In the early stages of a progressive, life-limiting disease, patients should be encouraged to understand how their scenario and timeline are likely to unfold; what the different stages of the disease will look like; anticipated hurdles and disease milestones; how to prepare for the disease to change; what natural death looks and does not look like; what supports are and are not available; options for place of death; and the role of palliative care. Only then can someone truly give informed consent for MAID.

Dr. Samantha Winemaker is Clinical Associate Professor in the Department of Family Medicine in the Division of Palliative Care at McMaster University. Dr. Hsien Seow is an Associate Professor in the Department of Oncology at McMaster University and Canada Research Chair in Palliative Care and Health System Innovation. They are co-hosts of the podcast, The Waiting Room Revolution. www.waitingroomrevolution.com For more information or to donate to the Hamilton Council on Aging, please visit www.coahamilton.ca