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

News Release - Ipsos Survey Report

September 21, 2016
For immediate release

Canadians Strongly Support Access to High Quality Palliative Care

Edmonton --- Palliative Care Matters has released the results of an Ipsos survey on palliative care. The results are an essential part of the evidence that a lay panel of Canadians will weigh at the Consensus Development Conference being held in Ottawa November 7-9, 2016, along with presentations from leading researchers in the field. 1. Palliative Care Matters wishes to acknowledge the financial support of the Canadian Partnership Against Cancer (CPAC) in making the Ipsos survey possible.

“The survey results show strong support for high quality palliative care for all Canadians, whether they live in rural and remote areas or in urban centres. Canadians are also strongly supportive of palliative care in a range of settings, including hospitals, hospices, and in the home. They believe programs should be comprehensive and address physical, emotional and human dimensions of care,” said Fred Horne, Co-Chair of the Consensus Development Conference and a former Alberta minister of health.

Support for leadership from the federal government was very strong, with 86% of respondents wanting to see national standards developed and implemented by the federal government. Support is high for palliative care becoming an insured service under the Canada Health Act at 85%, with 53% of those strongly agreeing. Canadians also want the Government of Canada to prepare a document outlining its plan for a palliative care program (89%) and 79% say they would read it.

“The results of the survey show that we need a vision for palliative care in the country. The research shows that almost one in four Canadians has cared for someone or is actively caring for someone right now and we need to create the right system to support them. In order to do this successfully and sustainably, we need all five health care partners involved - the people, governments, universities, health care managers as well as the profession.” said Dr. Granger Avery, President of the Canadian Medical Association.

Canadians were also clear that compassion matters. While pain management and help with daily living were seen as the most important elements of palliative care, Canadians want to see programs and providers that treat them with compassion. They value caregivers who are specifically trained in palliative care, including someone in the system who can coordinate services (88%).

"Palliative care provides comfort and support to patients and families during a life limiting illness, at the end stages of life and when dealing with grief and loss," said Sharon Baxter, Executive Director, Canadian Hospice Palliative Care Association. "While Canadians strongly value hospice palliative care, overall awareness is low." Only 58% of Canadians are aware of what palliative care involves on an unaided basis and 55% are aware of end of life care. Less than half are aware of residential hospice care (49%) or advance care planning (36%). Awareness of federal Compassionate Care Benefits is low at 15%.

“This survey lays the foundation for the next phase of this initiative,” said Karen Macmillan, Executive Lead for Palliative Care at Covenant Health and Conference Co-Chair. “The results, along with research from leading experts, will be presented at the Consensus Development Conference and inform the lay panel’s consensus statement on future directions for palliative care in Canada. We want professionals, patients and caregivers from across Canada to speak up and have their points of view represented at the conference.” 
Complete results and conference details are available at www.palliativecarematters.ca .

 

Palliative Care Matters is a national initiative that aims to further the development of a national palliative care strategy through a three part process that includes gathering input from the public and experts through research, holding the Consensus Development Conference in November, and issuing a report from the Conference Board of Canada outlining policy options and possible implementation plans early 2017.

Palliative Care Matters asked 1540 Canadians what they wanted to see happen with palliative care in the country.  The poll was online August 2 – 11, 2016, and the associated margin of error is +/-2.5%. The research questions were based on an analysis of recommendations made in previous reports on palliative care and input from a series of focus groups held in Edmonton, Toronto and Montreal.

About Covenant Health and the Palliative Institute:

Covenant Health is Canada’s largest Catholic health care organization and a key partner in Alberta’s integrated health system.  Covenant Health has established the Palliative Institute, committed to relieving suffering for patients and their families.

For more information on the 14 national organizations supporting the initiative, visit: www.palliativecarematters.ca

To arrange interviews with Fred Horne and/or Karen Macmillan, contact: 

Barbara Marcinkoski
Communications Consultant
Covenant Health Palliative Institute
(780) 735-9638  
Barbara.marcinkoski@covenanthealth.ca

To speak with Sharon Baxter, contact:

Sarah Levesque
Communications Officer / Agente aux communications
Canadian Hospice Palliative Care Association (CHPCA) / Association canadienne de soins palliatifs (ACSP)
(613) 241-3663 ext. 229 or/ou 1(800) 668-2785
SarLevesque@chpca.net

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.

News Release - Launch of Palliative Care Matters

July 21, 2016
FOR IMMEDIATE RELEASE

Covenant Health and National Partners launch Palliative Care Matters

  • Palliative Care Matters is creating a national strategy and roadmap by asking Canadians what they want to see happen.
  • The initiative is supported by 13 organizations and co‐chaired by Karen Macmillan, SOO of Covenant Health and Fred Horne, former Alberta health minister.
  • Former broadcaster Don Newman will chair the lay panel at the Consensus Development Conference.

EDMONTON, ALBERTA – Lack of consistent, reliable access to high‐quality palliative care services is a serious concern for many Canadians.

Palliative Care Matters is a national initiative designed to talk with Canadians about their views and lived experiences, review the most current evidence, and develop consensus on the steps that need to be taken now to ensure Canadians in all parts of the country can access high‐quality palliative care services as part of Canada’s universal healthcare model.

Covenant Health has joined with many of Canada’s leading national health organizations and experts in palliative care and health policy to lead this initiative. The initiative is being co‐chaired by Karen Macmillan, Senior Operating Officer of Covenant Health with lead in palliative care and Fred Horne, former Alberta health minister and health policy advisor.

Palliative Care Matters features Canada’s first consensus development conference on palliative care. Research done by the national polling firm Ipsos will inform the work of the initiative and The Conference Board of Canada will prepare a report after the conference outlining potential policy options and considerations for implementation.

Palliative Care Matters has three phases:

  • Over the summer a poll of 1500 Canadians will be conducted to find out what Canadians think, the services and supports they value most, and their views on access and approaches.
  • A Consensus Development Conference will follow on November 7‐9, 2016 in Ottawa. At the conference, a lay panel will study what Canadians said and hear from experts on the key issues that need to be addressed in order to improve palliative care. The lay panel is being chaired by Don Newman, one of Canada’s most respected journalists and an award winning broadcaster. Following their deliberations the lay panel will issue a consensus statement detailing their findings and proposing next steps.
  • The consensus statement will be at the heart of a roadmap for Canada released by The Conference Board of Canada early in 2017. The strategy will outline policy options and implementation plans to guide governments, health care delivery organizations, professionals and other stakeholders.

Palliative care provides comfort and support to patients and families during a life limiting illness, the end stages of life, and when dealing with grief and loss.

Interested Canadians are invited to sign up for more information at www.palliativecarematters.ca.

Quotes

“Ensuring that everyone has compassionate care at every stage of their life journey is our mission at Covenant Health. This is critically important as a person’s life draws to a close. That’s why Covenant Health is working with national partners to listen to what Canadians have to say, develop consensus on a palliative care approach for Canada, and bring this important issue to the forefront of our discussions about Canada’s health system in the future.” Karen Macmillan, Senior Operating Officer, Covenant Health, and Co‐Chair, Palliative Care Matters.

“With the recent passage of Bill C‐14, Canadians are now assured of access to medical assistance in dying. We now need to turn our attention to how Canada’s universal healthcare model can provide consistent access to high quality palliative care. Palliative Care Matters provides Canadians with an opportunity to express their views and, through the Consensus Development Conference, address key questions around how Canada should proceed.” Fred Horne, former Alberta Minister of Health and Co‐ Chair, Palliative Care Matters.

“We can’t escape the end of life. All Canadians, some day, will need to make decisions about the care we or someone we love receive in the last part of our journey. I’m honoured to be leading a panel of my fellow Canadians as we examine how we can live well with a life limiting illness or at the end of our life.” Don Newman, C.M., Senior Counsel, Navigator.

About Covenant Health and the Palliative Institute:

Covenant Health is Canada’s largest Catholic health care organization, providing compassionate, quality care to people of all faiths and traditions as a key partner in Alberta’s integrated health system. As a major provider of palliative care in the province, Covenant Health established the Palliative Institute, which is committed to relieving suffering for patients and their families.

For more information on Steering Committee members and Palliative Care Matters, visit:
www.palliativecarematters.ca.

To arrange interviews with Fred Horne and Karen Macmillan, contact:
Laura McNabb
Community Advocacy and Outreach Coordinator
Covenant Health Palliative Institute
(780) 735‐9638

To contact The Conference Board of Canada, call:
Juline Ranger
Director of Communications
(613) 526‐3090 ext. 431

To contact Don Newman, call:
Darryl Konynenbelt
Media Lead
(647) 203‐4340

In partnership with:

Palliative Care Matters – Steering Committee Members

Co‐chair: Karen Macmillan, Senior Operating Officer, Covenant Health
Co‐chair: Fred Horne, former Alberta Minister of Health (2011‐2014)

Sharon Baxter, Executive Director, Canadian Hospice and Palliative Care Association
Dr. Jeff Blackmer, Vice‐President, Medical Professionalism, Canadian Medical Association ‐ Office of Ethics
Dr. Heather Bryant, Vice‐President, Cancer Control, Canadian Partnership Against Cancer
Dr. J. David Henderson, President‐Elect, Canadian Society of Palliative Care Physicians
Anya Humphrey, Family/Patient Advocate
Shelly Jamieson, CEO, Canadian Partnership Against Cancer
Maria Judd, Senior Director, Canadian Foundation for Healthcare Improvement
Tammy Moore, CEO, ALS Society of Canada
John Ruetz, President & CEO, Catholic Health Sponsors of Ontario
Stephen Samis, Vice‐President of Programs, Canadian Foundation for Healthcare Improvement
Marcel Saulnier, A/Associate ADM, Strategic Policy Branch, Health Canada
Shirlee Sharkey, President & CEO, Saint Elizabeth Health Care
Anne Sutherland Boal, CEO, Canadian Nurses Association
Dr. Kathryn Todd, Vice President, Research, Innovation & Analytics, Alberta Health Services
Russell Williams, Chair, Canadian Frailty Network
Jewel Buksa, Project Manager, Palliative Care Matters