Advocacy in Action CHPCA’S 2020 Advocacy Report Prepared on December 7Th, 2020

Advocacy in Action CHPCA’s 2020 Advocacy Report Prepared on December 7th, 2020

Table of Contents

CHPCA’s 2020 Advocacy Report 1

A. National Awareness Campaigns 4 a) Hospice Palliative Care Week: May 4-10 4 b) The Saying Goodbye Campaign: May – June 2020 5 c) Carers Day: April 7th 5 d) Advance Care Planning Day: April 16th 6 e) Children's Hospice Palliative Care Day: October 13th 6 f) Bereavement Day: November 17th 6

B. Bill 3 Companionate Care Act 6

C. National Roundtable/Consultation around MAiD 7

D. Health Charities Coalition of Canada (HCCC) and the Impact of COVID-19 7

E. Publications, and Brief Submissions 7 a) Blueprint for Action 2020-2025 7 b) Fact sheet 2020 8 c) The Standing Committee on Finances Pre-budget Consultations 8 d) The Standing Committee on Health (HESA) Study on Palliative Care 8 e) Briefing on the Canadian Response to the COVID19 Outbreak 9 f) COVID19 Emerging Issues Document 9 g) The Canadian Declaration of Family Caregivers Rights and Responsibilities 9 h) Hospice Palliative Care in British Colombia: The Path Forward Report 10 i) CHPCA’s Position Statement on Hospice Palliative Care and Medical Assistance in Dying (MAiD) 10

F. Advocacy Meetings and Letters 10 j) Meeting with the Federal Minister of Health, the Honorable Patty Hajdu 10 k) QELCCC campaign with Health Canada for the 2020 holidays 11 l) Meeting with Kendal Weber, Assistant Deputy Minister, Strategic Policy at Health Canada 11 m) Hospice Palliative Care Research Issues Letter 12 n) QELCCC Statement on Hospice Palliative Care Research in Light of the COVID-19 Response 12 o) Joint Letter to Jane Philpott, Chair of the Joint Ministers’ Roundtable 12

p) Meeting with Kelly Block, Member of the Parliament 12

G. Protect our Access 13

H. The Quality End-of-life Care Coalition of Canada (QELCCC) Advocacy Activities 13 a) Brief Submission to the Standing Committee on Finances 13 b) MP, Matt Jeneroux’s Private Members’ Bill to Amend Compassionate Care Leave 14 c) Letters for the Federal Minister of Health 14 d) Targeted MPs outreach 14 e) Meeting with the Canadian Cancer Research Alliance (CCRA) 15

The Canadian Hospice Palliative Care Association is the national voice for hospice palliative care in Canada; dedicated to the pursuit of excellence in care for persons approaching death so that the burdens of suffering, loneliness and grief are lessened. The CHPCA operates in close partnership with other national organizations and continues to work to ensure that all Canadians, regardless of where they may live, have equal access to quality hospice palliative care services for themselves and their family.

Since its formation in 1991, the Canadian Hospice Palliative Care Association (CHPCA) has made great strides in transferring essential information about hospice palliative care programs and services to Canadians. By contrast, however, the need to advocate for improved access to hospice palliative care services and programs for Canadians has not diminished.

Advocacy is slow and steady work; because it does not often benefit from immediate results, the sustained effort that it involves may be overlooked. This compilation was created to provide an overview of the CHPCA’s advocacy activities in 2020, to document its ongoing work aimed at changing national health and social policy.

Summary of CHPCA’s Advocacy Activities in 2020:

Societal changes, combined with the effects of successful awareness-raising and information- sharing, have allowed the role of the CHPCA to evolve from being an information gatherer and sharer, to being an advocate for end-of-life care for Canadians.

A. National Awareness Campaigns

The CHPCA hosts various national campaigns to advance the profile of hospice palliative care in Canada and advocate for quality palliative care. An increased awareness of palliative care helps to improve knowledge of and access to services and empower families, health care providers, caregivers, researchers and policy makers.

CHPCA has developed several resources and a theme for each respective campaign that pertains to current challenges that faces the hospice palliative care community. Resources include, campaign posters, FAQ sheet, fact sheet, free national webinars, social media messages, myths vs facts sheet, e-hospice themed editions, and press release and MP letter templates that organizations can adapt to advocate for quality hospice palliative care in their province/territory or local municipality.

This year, CHPCA hosted the following campaigns:

a) Hospice Palliative Care Week: May 4-10 Let’s bust the myths about Hospice Palliative Care!

2020 observed the twentieth annual Hospice Palliative Care Week. A time to celebrate and share the achievements of Hospice Palliative Care throughout the nation. This year, the Canadian Hospice Palliative Care Association (CHPCA) addressed myths that circulate around Hospice Palliative Care in Canada. Campaign material can be found here. b) The Saying Goodbye Campaign: May – June 2020 The Canadian Hospice Palliative Care Association (CHPCA) and the CHPCA Champion’s Council launched the “Saying Goodbye” campaign in May 2020; calling on health authorities to implement a more compassionate approach to end-of-life visitations across Canada during the COVID-19 pandemic. While certain provinces have taken steps to relax visitation protocols for end-of-life situations, many hospitals and long-term care homes didn’t allow family access, even with personal protective equipment (PPE).

• CHPCA published a press release on the Canada news wire and sent out letter to Health Minsters of all provinces and territories, urging health authorities and providers to deliver on three key asks: o Adopt a compassionate protocol that allows those nearing death to say goodbye to their families and loved ones and follows safety measures including PPE requirements as indicated by the Public Health Agency of Canada. o Liaise with the hospice palliative care (HPC) community to exchange expertise in caring for the dying and the bereaved. o Offer grief and bereavement support services for those who lose a family member or loved one. • The health authority in Alberta and Manitoba have acknowledged the campaign by sending official letters in response to the CHPCA campaign letters. • CHPCA also developed a social media kit and a letter to MP template, that were made available on the CHPCA website to help advocate for a compassionate approach to end-of-life visitations across Canada during the pandemic. • The campaign received a significant media coverage and has been featured nationally on CBC Power and Politics and many other news platforms. More information about the campaign reach and media visibility, could be found in the CHPCA’s Saying Goodbye Media Brief.

c) Carers Day: April 7th Every Minute Counts Caregivers, in addition to what they are already doing, must now navigate the impact from COVID-19 as they support the vulnerable and most at-risk people in our communities. From the very beginning, Every Minute Counts was selected to reinforce the value of caregivers to Canadians and ensure they are at the forefront of

our collective actions. We are all still committed to spreading this message, and we encourage you to take part, with any effort you can spare. Information about the campaign could be found here.

d) Advance Care Planning Day: April 16th A Life Well Lived is a Life Well Planned Advance Care Planning is the process of thinking and talking about wishes, values, and preferences for future care in the event people are unable to speak for themselves. On the evening of April 16th, between 6 and 8 pm, Canadians were invited to speak with your family, friends and loved ones about their values, wishes and what is most important to them. A virtual fireside chat was hosted on the day of the campaign. Campaign material can be found here.

e) Children's Hospice Palliative Care Day: October 13th HPC for all ages #HPCforChildren CHPCA and the Canadian Network for Palliative Care for Children (CNPCC) were proud to mark October 13th as the first National Children’s Hospice Palliative Care Day in Canada. Many of us associate hospice palliative care with seniors and adults, but children with life-threatening illnesses need that comfort as well. Information about the campaign could be found here.

f) Bereavement Day: November 17th Grief is a Shared Journey – Physically distanced, together in grief On this day, CHPCA encouraged Canadians to engage government and all sectors of Canadian society in a national dialogue to identify and support access to the necessary resources for those living with grief and bereavement. This year, CHPCA acknowledged the grief that many Canadians has experienced amid COVID by hosting an online concert. The Saying Goodbye Concert featured an array of Canadian articles with representation from each province. Information about the campaign could be found here.

B. Bill 3 Companionate Care Act • Originally tabled in 2017, MPP Sam Oosterhoff’s first Private Member’s Bill calls for a framework for palliative care in all care settings with the Minister being required to report back to the Legislature on progress every few years. The purpose of the Bill is to help ensure access to palliative care for all Ontarians. • On the 23rd of November 2020, Sharon Baxter, Executive Director of CHPCA and Laurel Gillespie, Director of the Advance Care Planning Initiative in Canada, participated in the Ontario Legislative Assembly Hearing in support of Bill 3, Compassionate Care Act. • The CHPCA supported Bill 3 and was grateful to MPP Sam Oosterhoff for introducing it and for the MPPs of all stripes who supported this Bill - and who have supported the

hospice palliative care sector for many years. A reporting framework will help ensure that our society is a truly compassionate one, by ensuring hospice palliative care or quality of life care is available to people, right to the end of life, in all care settings – in hospice, in hospital, at home or in long term care. • CHPCA submitted a written brief to the committee outlining hospice palliative care and Advance Care Planning barriers and recommendations in support of Bill 3. • Bill 3, The Compassionate Care Act passed Third and Final Reading unanimously in the Legislative Assembly of Ontario on Tuesday, December 1, 2020.

C. National Roundtable/Consultation around MAiD • Along with an online survey, the department of justice held several roundtable meetings across the country to consult professionals on Medical Assistance in Dying (MAID). The meetings took place between January 13 and February 3, 2020. The roundtable meetings were hosted by three ministers. The Minister of Justice, the Minister of Health, and the Minister of Employment, Workforce Development and Disability Inclusion. • CHPCA has filled in the online survey and on the 29th of January 2020, Laurel Gillespie, Director of the Advance Care Planning Initiative in Canada, participated in the Ottawa Roundtable/Consultation around MAiD.

• In November, the Senate authorized the Standing Senate Committee on Legal and Constitutional Affairs to conduct a pre-study of Bill C-7, An Act to amend the Criminal Code (medical assistance in dying). The committee invited CHPCA to participate in its virtual public hearing by videoconference. CHPCA has submitted its Statement on MAiD for the committee reference.

D. Health Charities Coalition of Canada (HCCC) and the Impact of COVID-19 • As a result of COVID-19, Canadian health charities are reported a devastating reduction in revenues paired with an overwhelming increase in demand for services. • There is a critical need for federal government support to help organizations remain active once the crisis passes. Canadian health charities asked for up to $28 million per month in federal funding in order to offset their reduced revenues and enable them to continue to serve Canadians. • CHPCA is an active member (and past chair) of the Health Charities Coalition of Canada (HCCC). CHPCA has worked with the HCCC, CRA and Finance Canada to create some financial support program(s) for health charities. Sharon Baxter, Executive Director CHPCA met with the HCCC members a number of times every week to work through many of these issues.

E. Publications, and Brief Submissions

a) Blueprint for Action 2020-2025

• In 2010, the Quality End of Life Coalition of Canada (QELCCC) released the Blueprint for Action 2010-2020 which identified priority areas and recommendations for the last 10 years and provided a summary of progress made to date, current knowledge, issues and gaps. • Moving forward, CHPCA worked with the Coalition to produce the Blueprint for Action 2020-2025 • In February 2020, CHPCA has led the release of the Blueprint for Action and circulated a communications plan that includes promotional content i.e., social media messages, newsletter announcements and press release template for all Coalition members to use. • The Blueprint for Action 2020- 2025 has identified the following four priorities: 1. Increasing public awareness around hospice palliative care’s benefits, issues and areas needing improvement, including support for caregivers and those experiencing grief and bereavement. 2. Ensuring health care providers, volunteers, communities, formal and informal caregivers and others have access to education and training to ensure they possess the required competencies to provide optimal care. 3. Contributing to systematic, standardized research and data collection on hospice palliative care with special interest including formal and informal caregivers, and grief and bereavement. 4. Advocating for universally accessible and culturally safe access to hospice palliative care for under-served populations and those who provide caregiving and experience grief and bereavement. b) Fact sheet 2020 • Building on the success of CHPCA’s annual Fact Sheet, CHPCA released its 2020’s Fact Sheet in May. The document is a collection of current statistics and knowledge of hospice palliative care in Canada. The Fact Sheet is intended for those receiving care, health care professionals, caregivers or those interested in learning about hospice palliative care in Canada. c) The Standing Committee on Finances Pre-budget Consultations

• CHPCA has submitted a written brief the Standing Committee on Finances in advance of the federal budget consultations. A first submission has been sent to the committee’s clerk in February 2020 and a second brief was submitted in August 2020. • CHPCA submissions have advocated for an increased access and funding for the hospice palliative care sector to support the properties of the framework on hospice palliative care and the Blueprint for Action 2020-2025 recommendations.

d) The Standing Committee on Health (HESA) Study on Palliative Care

• The CHPCA has submitted a written brief to the Standing Committee on Health for the Study on Palliative Care in Canada. The Brief has been posted on the house of commons website and can be accessed here. • The brief identifies key challenges for hospice palliative care over the next five years and ensures that hospice palliative care is defined as an essential service that should be provided to everyone. To achieve this goal, CHPCA has identified four priority areas that are based on the Framework on Palliative Care in Canada (2018) and Action Plan on Palliative Care (2019) established by Health Canada. • The brief also calls for improved data collection, research, and knowledge translation (KT) to enhance the quality of life for all Canadians living with life- limiting illnesses by providing data and evidence to inform on improvements and develop new models and tools for care. These investments would help meet the Minister of Health’s mandate letter commitment to increase access to palliative care for Canadians.

e) Briefing on the Canadian Response to the COVID19 Outbreak • The CHPCA has submitted a written brief to the Standing Committee on Health for the Briefing on the Canadian Response to the COVID19 Outbreak .The Brief has been posted on the house of commons website and can be accessed here. • The brief is based on the COVID19 Emerging Issues Document developed by CHPCA in April 2020.

f) COVID19 Emerging Issues Document • CHPCA developed an overview of emerging issues and recommendations pertaining to COVID-19 and Hospice Palliative Care. This document underlines some of the hospice palliative care key issues that were determined by the CHPCA Board representatives from each province as well as some Quality End of Life Care Coalition of Canada (QELCCC) members in light of COVID-19. • Some of these issues might not be pertinent to every jurisdiction, but it was important to summarize them in one place. This document is being updated throughout the pandemic and is created for advocacy purposes. The latest iteration of the document was updated in November 2020 and could be accessed here. • Prepared by Sharon Baxter, Executive Director, Canadian Hospice Palliative Care Association (CHPCA) with feedback from the CHPCA Board of Directors and with feedback from Helena Sonea, Canadian Cancer Society, chair of the Quality End of Life Care Coalition of Canada Advocacy Committee; on April 6th, 2020.

g) The Canadian Declaration of Family Caregivers Rights and Responsibilities • In response to inconsistent and in some cases extreme restrictions on end-of-life visitations across Canada during the COVID-19 pandemic, Caregivers4Change in

collaboration with Plan Well Guide and numerous provincial and national organizations, including CHPCA, released a Declaration of Family Caregiver Rights and Responsibilities affirming that family caregivers are more than just visitors. • The Declaration calls upon decision makers and elected officials to deliver on the following key asks: o Adopt the Declaration in the programs and organizations, they lead or fund; o Find ways to give voice to family caregivers to ensure they have representation at the decision-making councils; o Implement a strategy that allows for grievances to be rapidly assessed and addressed. • The CHPCA has been involved as a contributing author for the Declaration and an advisory member with the Caregivers4change Network. Caregiver4Change is a growing network of people passionate about improving the lives of caregivers. This includes caregivers, researchers, clinicians, and organizational partners across Canada. CHPCA worked closely with the movement to inspire individuals, policy makers and communities to support family caregivers. • CHPCA developed the communications plan for the declaration and spearheaded the execution of the plan actions, including a press release and ongoing social media promotions.

h) Hospice Palliative Care in British Colombia: The Path Forward Report • A new report from the Provincial Hospice Working Group (PHWG), proposes a series of actions to prepare hospice organizations to work together to address the needs of British Columbians affected by aging and serious illnesses in local communities. CHPCA is current member of the advisory committee of the report. CHPCA has also provided advice and support to the roll out and the communications strategy of this report.

i) CHPCA’s Position Statement on Hospice Palliative Care and Medical Assistance in Dying (MAiD) • In November 2020, the CHPCA has released its board of directors’ statement on MAiD, that was developed in 2019, in response to an ongoing debate around MAiD new safeguards and a viral Op-ed piece on the National Post. The Statement was released on social media and on CHPCA’s website in both official languages. The full statement could be accessed here.

F. Advocacy Meetings and Letters

j) Meeting with the Federal Minister of Health, the Honorable Patty Hajdu

• The QELCCC Advocacy Committee requested a meeting with the Federal Minister of Health, the Honorable Patty Hajdu regarding the Coalition’s recommendations to the Standing Committee on Finance. • Helena Sonea, Chair of the Advocacy Committee and Sharon Baxter, Executive Director of CHPCA met with the minister in November 2020 to discuss three key recommendations with the minister: funding for the National Framework on Palliative Care, ring-fenced funding for palliative care research through CIHR, and making the Compassionate Care Benefit more flexible. They also highlighted the gaps that COVID-19 has created in the palliative care sector i.e care delivery, hospice palliative care training, grief and bereavement…etc. k) QELCCC campaign with Health Canada for the 2020 holidays

• Upon the Federal Minister of Health, the Honorable Patty Hajdu request, CHPCA and the Coalition are leading a campaign with Health Canada around Canadians loss and grief for the 2020 holidays. • The campaign aims to support Canadians by acknowledging their grief and the loss due to not being able to be with their loved ones over the holidays, and mourning the loss of community ties i.e., workplace, family gatherings…etc. • The campaign includes strategic messaging geared towards men and adolescent men’s grief and mental health. CHPCA and QELCCC advocacy committee developed the following materials in support of this effort: - Resource list - Press release with an anticipated quote from the Minister - Drafted social media posts for all organizations to use in support of this effort - Key messages document for the Minster’s of Health office and another iteration for the coalition member organizations to use in support of this effort • The campaign serves as an opportunity for the coalition to contribute its expertise and have the Ministers of health office amplify the Coalition’s collective messaging demonstrating the value of the QELCCC advocacy work for Canadians.

l) Meeting with Kendal Weber, Assistant Deputy Minister, Strategic Policy at Health Canada • On June 23rd, The QELCCC Advocacy, Education, Research and KT Committee Chairs met with Assistant Deputy Minister, Strategic Policy at Health Canada regarding the Coalition’s recommendations and some consideration amid the pandemic.

m) Hospice Palliative Care Research Issues Letter Meeting with Canadian Institutes of Health Research (CIHR) • The QELCCC sent a letter to the Minister of Health and copied Dr. Mike Strong, CIHR’s President. CIHR was appreciative of the correspondence. In June 2020, David Clements, Associate Vice-President, Governance and External Relations, CIHR met with Helena Sonea, Advocacy Committee Chair and Sharon Baxter, Executive Director CHPCA, to discuss the issues related to research that were referenced in the QELCCC research letter.

n) QELCCC Statement on Hospice Palliative Care Research in Light of the COVID-19 Response • The Quality End of Life Care Coalition of Canada (QELCCC) and the CHPCA worked with the federal policy staff to underline recommendations pertaining to hospice palliative care research in light of COVID-19. Helena Sonea, Chair of the Advocacy Committee, Christopher Klinger, Chair of the Knowledge Translation and Research Committee, Sharon Baxter, Executive Director, Canadian Hospice Palliative Care Association addressed key messages in a meeting with a Policy Advisor at the Office of the Minister of Health. The research statement was developed in efforts to support research funding amid COVID-19.

o) Joint Letter to Jane Philpott, Chair of the Joint Ministers’ Roundtable • With the recent focus on long term care, there is a growing understanding of the importance of the palliative approach to care for those living in what is most often their last home. As such, CHPCA has sent a joint letter with Hospice Palliative Care Ontario (HPCO) requesting the inclusion of Hospice Palliative Care, Advance Care Planning (ACP), and an overall palliative approach to care in the Joint Ministers’ Roundtable.

• Inclusion of Hospice Palliative Care and Advance Care Planning in the discussions for long-term care reform. o CHPCA has coordinated a joint letter campaign with the provincial hospice palliative care associations requesting to include Hospice Palliative Care and Advance Care Planning in the discussions for long- term care reform.

p) Meeting with Kelly Block, Member of the Parliament a) In December 2020, Sharon Baxter, executive Director CHPCA, met with Kelly Block the federal Member of Parliament for Carlton Trail–Eagle Creek in

Saskatchewan and member of the Conservative Party to discuss several issues around hospice palliative care.

G. Protect our Access Ensuring that patients will have access to pain and symptom management drugs. Other patient groups have signed on this initiative to request access to new/trial drugs that can make a big difference in the lives of their clients. • There are thousands of Canadians living with life-threatening conditions who need fast access to new medicines and for whom time is running out. As a result of the changes to PMPRB that the federal government is poised to adopt, Canadians are at risk of becoming among the last in line to receive new potentially life-saving medicines. • CHPCA has signed on to the POA access group.

H. The Quality End-of-life Care Coalition of Canada (QELCCC) Advocacy Activities

The CHPCA serves as the Secretariat for the Quality End-of-life Care Coalition of Canada (QELCCC), a group of 35 national organizations dedicated to improving end-of-life care for all Canadians. Please consult the QELCCC Annual Report 2020, for information about the Coalition advocacy activities in 2020. a) Brief Submission to the Standing Committee on Finances • CHPCA has worked with the QELCCC Advocacy Committee to develop a brief submission to the standing committee on finances for the pre-budget consultations in August 2020. The submission was supported by the following organizations: o ALS Societies across Canada o Canadian AIDS Society o Canadian Association of Occupational Therapists o Canadian Association of Psychosocial Oncology (CAPO) o Canadian Association of Social Workers o Canadian Breast Cancer Network o Canadian Cancer Society o The Canadian Home Care Association o Canadian Hospice Palliative Care Association (CHPCA) o Canadian Network of Palliative Care for Children o Canadian Nurses Association o Canadian Society of Palliative Care Physicians o Canadian Society of Respiratory Therapists o Canadian Virtual Hospice o Carers Canada o College of Family Physician of Canada (CFPC) o HealthCareCAN o Heart and Stroke Foundation o Mental Health Commission of Canada

o National Initiative for the Care of the Elderly (NICE) o Pallium Canada o Realize o SE Health

b) MP, Matt Jeneroux’s Private Members’ Bill to Amend Compassionate Care Leave • This spring, Member of Parliament Matt Jeneroux introduced a Private Members’ Bill in the House of Commons to expand the length of the leave employees can take using Compassionate Care Leave. The proposed bill would amend the Canada Labour Code to allow employees extra time off beyond the death of their loved one to take care of logistics and grieve. • In January, MP Jeneroux met with Helena Sonea, Chair of the Advocacy Committee and representative from the Canadian Cancer Society and Aia Raafat, Communication Officer, CHPCA to discuss this Private Members’ Bill in more detail and to get some feedback. • QELCCC and CHPCA has provided support to this private bill in hopes to amend the Canadian Compassionate benefit. The bill aimed to extend this period, allowing caregivers to extend the leave beyond the death of a loved one. He is proposing: o An additional three weeks of leave past the death if the employee has taken fewer than five weeks of leave;

o An additional two weeks of leave past the death if the employee has taken between five weeks and 20 weeks of leave;

o An additional week of leave past the death if the employee has taken more than 20 weeks of leave. c) Letters for the Federal Minister of Health • The QELCCC Advocacy Committee developed two letters for the Federal Minister of Health, the first letter will address short-term issues and the second covered longer-term issues in hospice palliative care and recommendations. d) Targeted MPs outreach • The Advocacy Committee has sent out emails to a targeted list of MPs requesting to meet over the coming months. The MP meetings are intended to provide a better understanding of the QELCCC organizations and professions, and to additionally highlight the issues QELCCC is actively advancing at time where COVID-19 has laid bare our deepening health inequalities.

e) Meeting with the Canadian Cancer Research Alliance (CCRA) • Christopher Klinger, Chair of the Research and KT Committee and Noush Mirhosseini, Committee member, met with the Canadian Cancer Research Alliance (CCRA) in October to update them on QELCCC activities and to make the case for hospice palliative care research funding.