1 Provincial Palliative and End-of-Life Care October 2019 Provincial Palliative and End-of-Life Innovations Steering Committee Read updates about some of our ongoing work: Advance Care Planning : page 2 Patients Death in the Home Setting : page 3 PEOLC Website: page 3 PEOLC EMS ATR: page 4 For PEOLC education opportunities, review the Provincial PEOLC Education Bulletin link. www.albertahealthservices.ca/info/ page14438.aspx As the seasons and the leaves change, we are happy to share with you some changes within our provincial Palliative and End-of-Life Care (PEOLC) team: Congratulations to Sharon Iversen who retired on September 18. We want to thank Sharon for everything she achieved during her time with not only our team but AHS. Congratulations on this huge milestone, it is well deserved. Tracy Lynn Wityk Martin, Provincial Lead, PEOLC Practice Development, is back from maternity leave. She is taking over the key provincial activities associated with the ACP GCD provincial policy as well as taking over the lead for the ACP GCD Community of Practice. Aurora Leang also remains a Provincial Lead with our team as well. The responsibilities of the Project Coordinator position have been absorbed into the joint operational work of our team. With Thanksgiving approaching, we want to express our gratitude to you and your teams for your continued commitment to ensuring quality care for patients at the end of their lives, and for those close to them. In particular, thank you to all of the individuals and groups that support our work through participating on our provincial committees and working groups. We hope you have a cozy, productive and enjoyable Fall. We look forward to continuing to make progress on our prioritized initiatives with your support. Please contact [email protected]with questions and/or to discuss our current or upcoming work.
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Provincial Palliative
and End-of-Life Care October 2019
Provincial Palliative and End-of-Life Innovations Steering Committee
Read updates about some of our ongoing work: Advance Care Planning : page 2 Patients Death in the Home Setting : page 3 PEOLC Website: page 3 PEOLC EMS ATR: page 4
For PEOLC education opportunities, review the Provincial PEOLC Education Bulletin link.
www.albertahealthservices.ca/info/page14438.aspx
As the seasons and the leaves change, we are happy to share with you some changes within our provincial Palliative and End-of-Life Care (PEOLC) team: Congratulations to Sharon Iversen who retired on September 18. We want to thank Sharon for
everything she achieved during her time with not only our team but AHS. Congratulations on this huge milestone, it is well deserved.
Tracy Lynn Wityk Martin, Provincial Lead, PEOLC Practice Development, is back from maternity leave. She is taking over the key provincial activities associated with the ACP GCD provincial policy as well as taking over the lead for the ACP GCD Community of Practice.
Aurora Leang also remains a Provincial Lead with our team as well. The responsibilities of the Project Coordinator position have been absorbed into the joint operational work of our team.
With Thanksgiving approaching, we want to express our gratitude to you and your teams for your continued commitment to ensuring quality care for patients at the end of their lives, and for those close to them. In particular, thank you to all of the individuals and groups that support our work through participating on our provincial committees and working groups. We hope you have a cozy, productive and enjoyable Fall. We look forward to continuing to make progress on our prioritized initiatives with your support. Please contact [email protected] with questions and/or to discuss our current or upcoming work.
The Conversations Matter Guidebook has been revised and is in stock and available to order. The guidebook walks individuals through the process of ACP and provides helpful information about GCDs. This updated resource now has descriptions of the GCDs in layman’s terms.
The Provincial ACP GCD Dashboard https://tableau.albertahealthservices.ca/#/workbooks/24779/views presents the 2018 AHS and Covenant Health ACP GCD evaluation results relating to key ACP CRIO (Collaborative Research & Innovation Opportunities) indicators, using chart audits and telephone interviews. Indicators include completion of GCDs, Tracking Records, end-of-life care alignment with GCDs and patient/ family satisfaction with ACP conversation.
For access: All AHS employees – search for Tableau on insite and
Non-AHS users may access the AHS Tableau Server using the Health Analytics Portal (HAP). Visit the portal (https://extranet.ahsnet.ca/hap/) to find out more on how external users register and get access.
The Connect Care Advance Care Planning Navigator was endorsed at the Connect Care Clinical Documentation Committee on July 9th. This committee flagged the navigator as having a high impact for change because it crosses the entire continuum of care. As such, additional
training and education will be required for implementation .
An evaluation of the guideline has been completed, with over 100 online survey participants. Participants cited benefits to family (less anxiety, satisfied with process) and healthcare providers (increased confidence, simpler process). Those that utilized supporting resources – website, FAQs, checklist – rated those resources positively.
The guideline itself was also rated positively: 98% felt the guideline was clear and logical or somewhat clear and logical. 90% felt the guideline was useful or somewhat useful. 90% felt the guideline was comprehensive or somewhat comprehensive. 94% felt prepared (very prepared/ prepared/ somewhat prepared) when an expected death
occurred, 93% felt prepared for an unexpected death. Areas for improvement: There is a need to increase awareness of supporting resources - website, online recorded
education session, FAQs, etc. Some process issues remain, especially with external stakeholders that may not be fully aware
of the guideline across the province. The Patients Death in the Home Setting FAQs have been updated and posted online - https://www.albertahealthservices.ca/assets/info/hp/peolc/if -hp-peolc-home-death-faqs.pdf
Palliative and End-of-Life Care Website https://myhealth.alberta.ca/palliative-care
Between April and June 2019, our website was visited almost 13,500 times—that’s almost 150 times a day!
My Health Alberta online PEOLC content for the public has been reviewed and revised with input from the website working group and subject matter experts.
The ACP anywhere campaign was launched in September 2019 to highlight that thinking and talking about wishes and values can happen anywhere, at any time, in any place around the world. Speak Up received a lot of photos that showcase a diverse range of places where ACP conversations can and do happen, from recognized landmarks to unexpected spaces. You can still be part of the conversation by posting a photo and a written message with the hashtag #ACPAnywhere. It could be advice, a quote, a conversation starter, a personal story or experience. It can also be in any language, as a means to better connect with our growing global audience. Please send your photo(s) and messages to [email protected] to be a part of the #ACPAnywhere global campaign.
Alberta Hospice Palliative Care Association Update
It has been a busy spring and summer of transition for AHPCA. At the end of March AHPCA’s long-time executive director, Jennifer Elliott, retired. AHPCA welcomed its new executive director, Kristi Puchbauer, in April 2019. Kristi is a skilled philanthropic executive with 24 years experience in the non-profit field. She has a great sense of humour and has the ability to remain calm, cool and collected in a crisis. Welcome Kristi! In August 2019, AHPCA relocated its office to the Kahanoff Centre for Charitable Activities located at #110, 105 12 Ave SE, Calgary, AB, T2G 1A1. Please update your contact information for AHPCA. If you happen to be in the neighbourhood, feel free to drop by to say hello. We are on the main floor across from the elevator banks.
To keep up-to-date on all of AHPCA’s activities, please consider becoming a member by going to: www.ahpca.ca Membership in AHPCA automatically grants you a non-voting associate membership in the Canadian Hospice Palliative Care Association. Follow us on social media for regular posts on the latest in palliative care news, education and updates about events! Facebook: Alberta Hospice Palliative Care Twitter: @AHPCA LinkedIn: Alberta Hospice Palliative Care
Have you ever wondered how to arrange thoracocentesis for someone living at home? Did you know the PaCES program has developed tips on accessing resources relevant to palliative care? “Local Palliative Tips: Resources for healthcare providers caring for patients living with advanced illness” has information on everything from arranging blood transfusions to meal delivery and grocery shopping! Check out the Local Tips for Providers document at www.ahs.ca/guru under Gastrointestinal and/or Palliative & Supportive Care (Metastatic Colorectal Cancer: Early Palliative Approach). As the name implies, most of the local tips are specific to the Calgary Zone (although some of the content is provincial in scope). Does your Zone have similar local tips to share, OR could you use a similar document? The Provincial Palliative Care Tumour Team is looking to adapt these Local Tips for other areas of the province. Volunteers are needed to develop content for the South, Central, North and Edmonton Zones. AHS’ Guideline Resource Unit (GURU) will support the formatting, posting and maintenance of these tips. Please contact [email protected] if you’d like to join a working group for your Zone or if you have another tip to share with your Calgary colleagues. For more info on PaCES see www.pacesproject.ca.
Palliative Care, Early and Systematic (PaCES) Update
Central Zone
The Central Zone Palliative Care Team would like to wish Pam Cummer a happy Retirement. Pam has been an important member of our team, sharing her knowledge and compassion, for 15 years as a Palliative Care Resource Nurse. She will be greatly missed. As we say good-bye to Pam, we would like to extend a welcome to Diana Nelson-Findlay, who will be the new Camrose Palliative Care Resource Nurse. Diana has most recently been with the Palliative Care Home Care Team in Camrose and is already familiar with our team and we look forward to continuing the work together. The Central Zone Palliative Care Team is excited to welcome Janel Boomer back to work. Janel is returning to her role as a Palliative Resource Nurse for the Red Deer area, after having the year off on maternity leave. We are fortunate that Karen Duke, who covered Janel’s leave, will remain in a casual role with the team.
Starting in the Fall of 2019, North, Central and South Zones will have access to an innovative program to support rural palliative patients to stay at home when desired and when they require additional care beyond existing home care services. The provincial Rural In-Home Palliative Funding Program will enhance care in the community and give the required end-of-life care supports in rural and remote areas so clients will be able to stay in their own home instead of being admitted to acute care. This program leverages the extremely successful Rural In-Home Palliative funding program that has been implemented in Calgary Zone. In collaboration with patients and their families, the rural palliative and home care teams identify, and authorize the amount and level of additional care that is needed. Patients and families will arrange for the care they need and will receive support from AHS in navigating the care and payment reimbursement processes. Edmonton Zone serves this same population within the many services offered in their invoicing program. Stay tuned for further communication and education
opportunities.
The provincial PEOLC team is drafting an addendum to the provincial PEOLC Framework that summarizes how Alberta is currently meeting the majority of the HTA quality statements and describes the plan moving forward to meet the outstanding gaps in the Framework initiatives and HTA quality statements.
Health Technology Assessment (HTA)
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EMS PEOLC Assess, Treat, and Refer
Zone ATR Reps
Inquiries from EMS related to the Assess, Treat and Refer program may be directed to: [email protected].
A paramedic attending a young lady who is palliative made a meaningful connection. After the event, he stayed in touch with her and learned one of her bucket list wishes was to go for a ride in a plane. This paramedic is an avid skydiver who has jumped all over the world; through his travels, he has made many friends, a lot of these friends are pilots. Through these connections he has been able to fill the lady’s bucket list. To date he has been able to get her on a hot air balloon ride, a helicopter ride and a small plane ride.
EMS ATR Stories
Recently I read a patient care report of a paramedic crew who was assigned to transport a patient from his home to a hospice in Calgary. The patients’ family went ahead in a separate vehicle and became a bit anxious when it seemed they were taking a bit too long. Upon the arrival of the patient they learned that during the transport the paramedics asked him if he wanted to stop anywhere along the way, his response was he wished to go to Peter’s drive-in for a strawberry shake, the paramedics were happy to fulfill his wish and off to Peter’s they went. Learning of this the family (and patient) were delighted the paramedic crew injected a good dose of humanness into this very important transfer.
1713 Events occurred in Phase II of October 2016 to October 2019. 84% of patients were treated in their
preferred location (may have included being transported)
80% were treated in place The total time spent on task is less
The “Living Well, Planning Well” legal toolkit was created by Speak Up and two legal firm partners: TorkinManes (Toronto, ON) and HarperGrey (Vancouver, BC). Its development was funded by Health Canada as part of a $1.9 million funded project over three years to help people living in Canada prepare for their future health care needs. The legal toolkit is designed to help lawyers and their clients go through the process of ACP. The toolkit provides information about the importance of ACP and its role within future life planning in general (e.g., estates and wills, life insurance, investment planning). It also covers different scenarios, prompts, and precedent clauses that lawyers can use to start ACP conversations with their clients. When a person experiences a health crisis or serious illness, they may be unable to indicate their treatment preferences and their SDMs may not be able to accurately predict their wishes. This toolkit can help lawyers make a significant difference in their clients ’ lives by encouraging them to reflect on and discuss their wishes, choose appropriate SDMs and alternates, and share their wishes with their SDMs and health care providers.
Living Well, Planning Well : Resources to Support The Legal Processes Of
Advance Care Planning Lawyer’s Toolkit
Speak Up and the British Columbia Centre for Palliative Care developed a complementary “Living Well, Planning Well” resource for the public. A national Advisory Committee of legal professionals, health care providers, and patient and caregiver representatives supported its development. Funding for this resource was provided by the Canadian Bar Association ’s Law for the Future Fund grant program. This resource provides plain language summaries of the processes of health care consent, capacity, ACP, and substitute decision-making in Canada. It begins with an overview of the national legal norms around ACP, followed by short infographic summaries of the legal requirements for each province and territory (except for Nunavut, which does not have ACP legislation). It is relevant for anyone who is unfamiliar with their laws, may have moved recently to a new province/territory, or is concerned about having their ACP and SDM rights respected.
The “Living Well, Planning Well” legal toolkit and many other helpful resources and tools for patients, families, and health
care providers are available on Advance Care Planning in Canada resource library at www.advancecareplanning.ca. Please contact Advance Care Planning in Canada at [email protected] for more information.
Attitudes towards Advance Care Planning (ACP) have changed significantly over the past seven years. In a recent poll conducted by Nanos Research and commissioned by the Canadian Hospice Palliative Care Association, 93% of people in Canada said it’s important to talk about ACP with family and friends (compared to 44% in 2013). As time has passed and attitudes toward Advance Care Planning have changed, Speak Up instigated a national consultation process to update the National Framework on ACP. The first version of the National Framework was created in 2012, and it had an extremely positive impact on policy, practice, and programming across the country. The 2019 Pan-Canadian Framework builds on the legacy of the 2012 National Framework and its influence on new developments and accomplishments. This new Framework includes an updated plan for ACP implementation based on the current landscape--focusing on collaboration among different jurisdictions (local, provincial/territorial, national) and integrating efforts across systems (health, law, social services, and life planning). The development of the new Framework was funded by Health Canada as part of a $1.9 million project over three years to help people living in Canada prepare for their future health care needs. The new Framework will be launched at the Canadian Hospice Palliative Care Conference (Sept 19-21). It will also be available on our resource library at www.advancecareplanning.ca.
National Framework : Advance Care Planning in Canada
Care; Seniors Health, Community, Seniors and Addiction & Mental Health
Dr. James Silvius, [email protected] Provincial Medical Director, Seniors Health,
Community, Seniors and Addiction & Mental Health Senior Medical Director, Seniors Health SCN
Tracy Lynn Wityk Martin, [email protected] Lead; Palliative & End of Life Care; Community, Seniors, Addiction & Mental Health
The first time I heard about Death Cafe was at the AHPCA conference in November 2017. Several communities in Alberta were offering Death Cafes and there had been great interest and success in attendance. I visited the Death Cafe website to learn more about the movement and how to start a cafe in my own community of Whitecourt. We received sponsorship through the Cancer & Wellness Society and FCSS; and ‘The Orchard Cafe’ agreed to provide space and offer beverages and snacks for purchase. Death Cafes have been held in Whitecourt about every other month for the past 18 months with favourable community engagement. Some community members in the neighboring Town of Mayerthorpe heard about the Death Cafe in Whitecourt and decided to establish their own chapter. A local librarian had read about Death Cafes in libraryjournal.com and offered the library for the venue. The Mayerthorpe Library now hosts a Death Cafe every other month, providing a comfortable space with tea and coffee, and one of the organizers provides cake. When the AHS Provincial PEOLC Bulletin mentioned the Whitecourt and Mayerthorpe Death Cafes, members of the Hinton HCC Palliative Care Advisory Committee were inspired to form one in Hinton as well. The Hinton Healthcare Foundation agreed to sponsor the cafes while an independent coffee shop, “The Old Grind”, agreed to provide the space, beverages and cake. The first Hinton Death Cafe took place on September 9, 2019. By Kim Nendsa, Area 4 Palliative Care Resource Nurse
