Geography Professor joins Lay Panel to Address Palliative Care Gaps

Palliative Care Matters conference becomes turning point for Canadian consciousness and action

“I became involved in this panel, partially because of societal concern, but when my mother was diagnosed with uterine cancer last year. It hit me, partially because when she told me, she was very sad. And I realized it was the first time I’d ever heard my mother sad. And it became clear very quickly that she cared for everyone else, but never herself. But suddenly she was in the position where she was needing care.

“But luckily I’m academic, I was on sabbatical, so I put my research aside and I was able to care for her daily for the last six months of her life. And in the process I realized the difficulty of navigating the healthcare system… and social agencies,” said Ken MacDonald, a University of Toronto professor and a member of the lay panel at the Palliative Care Matters Consensus Development Conference.”

The conference, held Nov. 7 – 9 in Ottawa, was a turning point in Canada’s consciousness and the decisions that need to be made about supporting Canadians suffering from life-limiting illnesses. While palliative care has been studied extensively in Canada over the past two decades, this conference was significant in four ways: it focussed on the voice of patients and their families, it presented extensive research from diverse areas of study, it included multiple stakeholders who came to a common frame of reference, and it involved a lay panel of Canadian citizens that, like a jury, sifted and sorted the scientific evidence through the lens of their experience and came to a set of recommendations – the Consensus Statement.

Palliative Care Matters engaged the general public through a pre-conference Ipsos survey of 1,540 Canadians, through people who viewed the conference over the web at more than 200 sites, and through the lay panel.

“I’m extraordinarily well educated. I’m reasonably well off. I can take the time to do this [care for his mother]. I’m the like 0.1 per cent of the population that can do this and not suffer as a result of it. What are the other 99.9 per cent of the population going to do when this hits them?” continued lay panel member Ken MacDonald when he was interviewed at the conference.

“We have to develop a better system than leaving everyone to their own devices, just trying to fill the gaps. Because not everyone can deal with those circumstances either financially or emotionally or in terms of their own life circumstances.”

The priorities for consideration by Palliative Care Matters were identified from 20 years of largely unaddressed recommendations for palliative care. Academics researched six probing questions, reflecting on the Ipsos survey data and the most current research from around the world, to provide the lay panel with the best scientific evidence and emerging perspectives. The unprecedented integration of the lived experience of Canadians with the leading thinking from an interdisciplinary group of academics – about all aspects of palliative care planning, design and delivery – led to strong recommendations by the lay panel.

The Consensus Statement calls for palliative care to be enshrined in the Canada Health Act, woven into the health care system and guaranteed for all Canadians. The lay panel asserted that it is critical palliative care become an insured service under the Canada Health Act, and made 20 specific recommendations, including that:

  • The Canada Health Act be amended to include integrated, palliative home care with portable universal access and support for patients and caregivers, customized to patients’ medical and psycho-social needs;
  • The federal government provide substantial and sustained funding for the development of a national strategy, including capacity building, standards development and monitoring, and research;
  • Every physician in Canada be able to provide basic palliative care and that accrediting and licensing bodies and professional colleges ensure competencies are taught and tested; and
  • A wide-spread public awareness campaign about palliative care support the implementation of a national palliative care strategy.

The Conference Board of Canada is currently reviewing the Consensus Statement and preparing a report that will outline how to implement the recommendations. This report is expected to be released in spring 2017. However, some of the recommendations and learnings from the conference can be acted on now by health providers from across Canada.

The Consensus Statement may be found on the Palliative Care Matters website. To ensure that the recommendations are implemented, healthcare professionals and providers, as well as patients, their families and caregivers need to share and strongly support the recommendations through their organizations and with their elected representatives.


Prepared by Covenant Health Palliative Institute for sharing in newsletters, and on websites

For more information contact:

Barbara Marcinkoski. Communications Consultant
Covenant Health Palliative Institute
Mobile: 780 224-2696
Email: barbara.marcinkoski@covenanthealth.ca

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News Release - Palliative Care Matters Consensus Statement

November 9, 2016
For Immediate Release

Canadians call for Palliative Care to be enshrined in Health Act

Lay Panel representing Canadians reach consensus at national conference   

Ottawa --- After hearing from more than 1,500 Canadians in a national survey and meeting with experts for three days in Ottawa, a citizens’ lay panel has delivered a Consensus Statement, calling for palliative care to be enshrined in the Canada Health Act, woven into the health care system and guaranteed for all Canadians. Led by veteran journalist Don Newman, the panel called for a stronger, integrated approach to home care, allowing Canadians to be supported at home in their final days. 

Covenant Health Palliative Institute and 13 of Canada’s leading national health organizations led the Palliative Care Matters Consensus Development Conference that was held November 7-9, 2016, in Ottawa. The lay panel of 12 Canadians heard scientific evidence from an academic expert panel and made several recommendations in their Consensus Statement to improve palliative care in Canada. 

An Ipsos survey conducted this summer on behalf of the initiative clearly showed that Canadians prefer to die at home, with 90 per cent responding that patients should have the right to receive care in their own home at the end of life and 86 per cent indicating that the public health system should cover the costs of palliative care so everyone can access it as needed.

The panel asserted it is critical palliative care become an insured service under the Canada Health Act, and made 20 specific recommendations, including that:

  • The Canada Health Act be amended to include integrated, palliative home care with portable universal access and support for patients and caregivers, customized to patients’ medical and psycho-social needs;
  • The federal government provide substantial and sustained funding for the development of a national strategy, including capacity building, standards development and monitoring, and research;
  • Every physician in Canada be able to provide basic palliative care and that accrediting and licensing bodies and professional colleges ensure competencies are taught and tested; and
  • A wide-spread public awareness campaign about palliative care support the implementation of a national palliative care strategy.

“Chairing such a diverse and discerning lay panel has been a tremendous privilege and learning opportunity. Support for Canadians and their families at end of life is one of the most important issues we face as a civil society,” said Don Newman, Chair, Lay Panel, Palliative Care Matters. “Ensuring that the suffering of our fellow citizens is alleviated is at the heart of a civil society. It isn’t enough to care; Canada must turn its caring into legislation that ensures that palliative care is a part of the Canadian health system and receives the attention and resources it needs.” 

"We have been so inspired by the participation of people across the country in this initiative. Through this conference we have been able to enrich this lived experience with the work of thought leaders to create a shared vision for the future of palliative care. We hope that health providers and policy makers reflect thoughtfully on the consensus that was reached here,” said Karen Macmillan, Co-Chair, Senior Operating Officer at Covenant Health. 

“Governments across Canada are talking about palliative care as part of the Health Accord. This is a once in a generation opportunity to make a difference in palliative care and the Lay Panel’s recommendations should be part of the change Canadians want and deserve,” said Fred Horne, Conference Co-Chair,  and former Alberta health minister and health policy consultant.

Specific recommendations for each of the six questions posed to the academic panel may be found in the Consensus Statement

The Palliative Care Matters initiative began with listening to Canadians through focus groups and the Ipsos Research survey and it continued with the Lay Panel members, chosen for their ability to represent the views of broad groups of Canadians. 

The third and final phase of the initiative will be a report in early 2017 from the Conference Board of Canada which reviews the Consensus Statement and outlines how the recommendations can be implemented. 

Covenant Health is Canada’s largest Catholic health care organization and its Palliative Institute is committed to relieving suffering for patients and their families.

For more information or media assistance, please contact:

Lisa Robertson
lrobertson@hillbrooke.ca
(613) 739-7032

Janet Weichel McKenzie
jweichelmckenzie@hillbrooke.ca
(613) 808-4642

Interview with Don Newman

Don Newman, one of Canada’s most respected and trusted journalists will lend his experience and balanced perspective to a national conversation on palliative care in November, 2016. As Chairman of the lay panel for the Palliative Care Matters consensus development phase, Newman’s skill and diplomacy will be drawn upon to help shape a national vision for palliative care. Here he shares his views on the importance of a national approach, and why he feels that now is the time to take action to the benefit of all Canadians.

Why do you believe it is vital to reach a consensus on palliative care in Canada right now?

As the population continues to age the need for palliative care will increase. People live longer, but to an important degree as they live longer they are more susceptible to the illnesses of old age.‎ Dementia and Alzheimer's are just two examples, but there are many others as well.

Going forward, the demand for palliative care will become acute. We must act now to agree on best practices for providing palliative care, how is it to be financed in relation to traditional ongoing health care, and the mix of private care and public care that will be available.

What is it about this initiative that compelled you to become involved?

This initiative has a particular appeal. It has been launched by Covenant Health in Alberta, is being held in Ontario in the national capital of Ottawa and has attracted people from around the country.

Beyond that, it is being held at the time when federal and provincial deputy health ministers are near the end of their negotiations for a new federal-provincial health accord.  

When the last accord was negotiated in 2004, money was specifically committed to the illnesses of the aging baby boomers: cardiac care ‎and joint replacement. Twelve years later priorities have shifted somewhat – and during the life of a new accord, will shift even more.  

Palliative care will become an ever increasing function of the health care system. Now is the time to be thinking how best to deliver it.

Do you know of friends or family members who have received palliative care?

In 1993, a member of my family was diagnosed with terminal cancer. Despite chemotherapy, a year later she could no longer get out of bed. Fortunately, Ontario had a program of home care for terminally ill cancer patients in the later stages of life. Through that system of palliative care she was able to remain to the end in her home --- something that was very important to her.

What would you like to see as the legacy of this initiative? 

The legacy of this conference should be threefold.

Public awareness that palliative care is an increasingly large and important part of health care in Canada is primary.

From that must come a consensus ‎ on minimum standards of care across the country, adequate funding to provide them, and ready accessibility when required.

Finally, the Canadian people need to take ownership of our findings, and through them the country's ministers of health and the governments in which they serve.

If that all happens, then Canadians will have a program of palliative care across the nation worthy of a compassionate, 21st century country.