Access to Palliative Care: A Little-known Right in Quebec

Categories: Education, Featured, In The Media, Leadership, Policy, and Research.

By the Alliance des maisons de soins palliatifs du Québec

A vast majority of Quebecers (79%) wrongly associate palliative care with only providing comfort care at the end of life, according to a IPSOS survey of 1,000 respondents over 30 years of age conducted in March 2023 for the Alliance des maisons de soins palliatifs du Québec (the Alliance).

On the contrary, when delivered in the early stage of disease, palliative care can provide patients with benefits that go way beyond alleviating pain. With this survey, the Alliance aimed to collect concrete data on Quebecers’ perception of palliative care.

“During National Hospice Palliative Care Week, it is very important for us to share the results of this survey, which clearly demonstrate the need to educate people on palliative care. It is worth mentioning that all Quebecers have a right to palliative care, recognized by the Act respecting end-oflife care,” said Diane Langlois, President of the Alliance.

“The Alliance and its members represent 329 beds dedicated to palliative care, or approximately 30% of palliative care capacity in Quebec. Through sharing skills and knowledge, hospices are a significant ally in improving access to quality palliative care in the province. The Alliance reaffirms its offer of full cooperation with the Government of Quebec and hopes to work with all palliative care stakeholders in the province to build a society that meets and exceeds the palliative needs of its people. We continue to believe that better access to palliative care begins with public education, early identification, and appropriate training for all stakeholders involved, including healthcare practitioners,” concluded Ms. Langlois.

According to the Institut national de santé publique du Québec (INSPQ), about 70% of adults (48,500 in 2021) die as a result of chronic disease. The Alliance observes that lack of education and training, for both caregivers and the general public, are major factors contributing to a limited access to palliative care.

In Quebec, the right to quality palliative care was officially recognized in December 2015. It is crucial to educate the public on what this right actually means.

“We need to improve access to palliative care as guaranteed by the Act respecting end-of-life care. Since palliative care improves the quality of life of people who are ill, it is crucial to make it accessible to everyone across Quebec. To that end, we acknowledge the significant contribution of all hospice and home care workers. There is still much work to be done to train as many workers as possible, especially those providing home care; to build capacity; and to educate the general public on the benefits of palliative care and how to initiate important conversations in the midst of illness,” said Olivia Nguyen, President, Société québécoise des médecins de soins palliatifs (SQMDSP).

Survey Highlights

  • 79% of respondents believe that “palliative care” refers to “comfort care provided to dying patients.” Only 48% believe that palliative care can improve one’s quality of life. And a further 28% feel that pain is “normal” at the end of life.
  • 68% of respondents believe that palliative care only applies to the last weeks of a patient’s life.
  • Only 40% think that palliative care can be received at home and 28% think it can be received in retirement homes.

On the Importance of Palliative Care Access for Everyone

Palliative care is an approach that involves the full scope of physical, psychological, social, and spiritual care provided to people with a guarded prognosis. The goal is to improve the patient’s quality of life.

“Equitable access to quality palliative care is a priority for our organization, and we want to emphasize the key role played by hospices in providing that type of care to patients,” said David Raynaud, Manager, Advocacy, Canadian Cancer Society. “We also want to bring to light all the work accomplished by the Alliance in this matter. It is crucial to demystify palliative care so it can benefit a greater number of people in the setting of their choice and according to their needs.”

As we celebrate National Hospice Palliative Care Week, the Alliance and its partners want to recognize and value the work of all healthcare practitioners and teams, volunteers, and family caregivers working in palliative care.

The Alliance sincerely thanks the Canadian Cancer Society and the Montreal Institute of Palliative Care for providing financial support to conduct this survey and for their education and advocacy efforts to raise awareness about palliative care and its benefits among Quebecers.

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