The right to die with dignity… at home

It is not acceptable that all Quebecers who so wish cannot die at home.

In the province where the population is aging faster than anywhere else in North America, only 1 in 10 people die at home, compared to 3 in 10 in the rest of Canada.

This situation is not only deplorable, it contravenes the Act respecting end-of-life care. This law, adopted in 2015, guarantees access to comprehensive, quality palliative care throughout the network, INCLUDING at home. Currently, this is not the case.

We talk a lot about access to medical assistance in dying (MAID) in Quebec. The Legault government also tabled a new version of the bill on MAID on Thursday, which will broaden its access to people who suffer from a serious and incurable disease such as Alzheimer’s, or from a serious and incurable neuromotor disability. We also want to force palliative care homes to offer MAID. All of that is fine, provided that, at the same time, we ensure that quality palliative care is offered throughout the province.

Hospice palliative care at home meets the wishes of more than half of the population, according to a 2015 study by the D^D Geneviève Dechêne, a pioneer in palliative home care in Quebec, and her team.

The study showed that when palliative care at home is offered, 65% of people take advantage of it.

What explains why palliative home care is less developed here than in the rest of Canada?

First explanation: expertise is not recognized in Quebec, the received idea being that any family physician can provide it. However, universities offer a year of specialization in palliative care to family medicine students. Perhaps this expertise should be recognized outside the walls of the school?

Second explanation: the interpretation of the agreement between the Ministry of Health and the Federation of General Practitioners of Quebec (FMOQ) which limits the duration of intensive care offered at home to “approximately” seven days. The FMOQ affirms that doctors read this agreement too narrowly, and says it is open to discussing it. That’s excellent news.

The Minister for Health and Seniors, Sonia Bélanger, says she is determined to develop palliative care at home throughout Quebec. It absolutely must take advantage of the openness of the FMOQ to discuss other points, including the creation of dedicated positions in palliative care throughout the province.

The savings generated by palliative care at home should convince decision-makers: it costs 50% less to treat a person at home than in hospital during the last 12 months of their life.

There remains the fundamental problem: at present, there are 465 positions for family medicine residents to fill, according to the FMOQ. It seems obvious that we will not regulate access to palliative care at home without mentioning the attractiveness of family medicine.

Finally, it is impossible to talk about palliative care at home without talking about caregivers. It is estimated that it takes about three people from the entourage to support a person at the end of life at home. Palliative care specialists are formal: we tend to underestimate the impact of this commitment on the physical and psychological health of loved ones.

In a document produced for the palliative care teams of CLSCs in Montérégie in 2017, it is recalled that 30% of caregivers are at risk of falling ill, hence the importance of offering them support during and after their involvement.

Dying at home is not a solution that suits everyone. Some will choose to die in a palliative care home or in a hospital, others will breathe their last breath in a CHSLD.

But for those who want it, and who are well supported, this option must be available. That’s also dying with dignity.