How do you want to die? It’s a difficult question but nearly everyone has an answer.
A tougher question is, does your family know what your end of life preferences are?
It’s not a topic typically brought up in casual conversation, but it’s an important one. In a society with medical technology as advanced as ours, people’s vital functions can be sustained even after they lose consciousness or their quality of life has been reduced to pure, unbridled agony. Some want to eke out as many minutes on this earth as possible. Others will opt to remain comfortable and lucid. Plenty will not have any choice in the matter, and it will be left up to their loved ones.
In health care circles, this ethically thorny issue is referred to as medical levels of care, or levels of intervention. It might surprise the general public to know that in many jurisdictions, there is no standard by which to measure someone’s preferences for end of life care. They often vary from facility to facility, which makes for difficulties when patients are transferred from, say, a long-term care facility to a hospital, or the opposite.
Local physician Dr. Ruth Vander Stelt, during her time as the President of the Quebec Medical Association between 2011 and 2013, lobbied successfully for a standardized system for levels of intervention across the province. The process was long and arduous, but in the current pandemic circumstances, she said the importance of the discussion is being recognized.
“It puts dialogue in place,” she said. “Medicine used to be this paternalistic thing, ‘The doctor will decide what’s good for you’. It makes [that dialogue] obligatory.”
“This whole notion of patient/partner, you’re in the driver’s seat as a patient, and I’m in the seat next to you as a physician, doing this together,” she continued. “[It’s] just a wonderful paradigm shift.”
Dr. Isabelle Gagnon, the chief of general care and palliative care at the Gatineau Hospital, said that the usage of the standardized levels have become more common outside of long-term care.
“It’s not really new, but I think that with the COVID, it shows that it should be used more often, because everything goes very fast,” she said. “In fact ... it’s for everybody, mostly people that have some disease that can cause very rapid change in their health situation, but it’s for everybody ... It’s not the first thing we talk [about] with people under 30, but people who are older or have medical conditions, it’s a must-have in the relationship, like questioning [their allergies] or the pills that [they] take, we should have a discussion about what kind of care people want to have if there’s something that changes rapidly in their condition.”
Vander Stelt started her career in long-term care more than 20 years ago and said that based on what she saw, she knew there was an ethical obligation to give the patient more say in their level of treatment.
“Nobody was asking these people and their families if they wanted CPR and nobody was talking about different approaches to illness and dying,” she said. “Once they had some kind of situation and it was leading to their death, families and caregivers were faced with difficult and urgent situations ... These people would sometimes end up in intensive care from long-term care for lack of preparedness.”
This ethical dilemma led Vander Stelt and her colleagues to develop four levels of care that they would discuss with their patients. The first level is for people that will undergo any kind of medical intervention that might work, no matter how intrusive or painful. The second is similar to the first, but draws the line at some specific options.
“That level of care you could have some discomfort, temporary discomfort, for the sake of pulling through,” Vander Stelt said.
The third level she described as “comfort trumps care”. The patient will not be transferred to intensive care, or from a long-term care facility to a hospital unless not doing so would jeopardize their level of comfort.
The fourth level is what’s commonly known as palliative care, where caregivers are just providing as serene an experience as possible.
Vander Stelt added that in addition to the four levels, the option of whether or not to conduct CPR is also a standalone question on their version. She said there was some resistance at first, but the idea really started to catch on and gradually the majority of local patients were queried about their preferences for end of life care.
“Slowly, it morally became obligatory. We hit 90, sometimes 100 per cent in long-term care, then we started putting it slowly in general care as well.”
Other regions were adopting similar strategies, but the application across the province was scattershot. When Vander Stelt became president of the Quebec Medical Association in 2011, she began to lobby for a unified test across the province.
The board went on to present the idea to the newly formed Institut national d’excellence en santé et en services sociaux (INESSS), a government-run research institution whose mission is to “promote clinical excellence and the efficient use of resources in the health and social services sector.”
Since there was very little research on the subject, the INESSS conducted their own study which brought together all the key players provincially, which was published in 2015.
“They did a wonderful job, amazing,” Vander Stelt said. “They got everybody on board, all the stakeholders.”
She pointed out that the study recommended a standard that was almost identical to the one that she and her colleagues had implemented locally.
The study also highlights the importance of how the physician or health care worker has the conversation, even going so far as to say that the process leading up to a patient or their caregiver’s decision about levels of care is just as important as the decision itself.
From there, a guide was produced and distributed to medical providers across Quebec. Gagnon currently offers a professional training course on levels of intervention to any workers that want to learn more about the subject, and also teaches
“I’m passionate about the subject,” she said. “I think it’s a subject that’s very important, but with the pandemic it shows everybody that it’s really important to talk about that.”
Dr. Nicolas Gillot, the director of professional services at the CISSSO, said that while there have been no formal collaborations with their colleagues in Ontario, they have had discussions on the subject.
“Papers for levels of care are in French and English, so we can transfer them if a patient needs to go on the other side of the river,” he said. “We are discussing together with Ontario, some physicians ... because it’s important for us to be able to talk. We know that in Pontiac, some patients are going sometimes in Pembroke so ... it’s important to have good links between our institutions, together.”
Vander Stelt said that she would like to see some kind of standard adopted in other regions across the country. She noted with some pride that local physicians were some of the early adopters of this important facet of medical care.
“Now it’s all over the province ... I smile every time because it started in the Pontiac,” she said. “Other people were starting it, but Pontiac was definitely the longest.”
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