*All resources are from third parties that are Free Open Access. Please see the complete list of references below.
The last few weeks have been a whirlwind of planning as Canada has prepared itself for an increasing number of COVID-19 cases to hit our hospitals. We’ve watched its devastating impact in China, Italy, and closer home in some of the hardest hit areas in the United States such as New York City.1 These have provided a sobering glimpse into COVID-19’s possible impact on Canadian healthcare.
Though recent pandemics have occurred somewhat regularly every five years (Ebola in 2014, H1N1 in 2009, and SARS in 2003), the scale of the COVID-19 pandemic is one that has never before been seen in our lifetime. In these unprecedented times existing resources abroad have not been enough.
Community spread has been here in Canada for the past few weeks. Thankfully, aggressive public health measures have made a huge impact. Confirmed cases in Ontario ICU’s have been fairly stable for the past two weeks.2 However, Canada is not exempt from tragedy: long-term care homes have been hard hit2 and on April 25th the COVID-19 deaths per million in Montreal exceeded Italy’s.3
The goal of this post is to provide easy access to palliative care and advance care planning resources for COVID-19 for Canadian physicians and patients to plan for an end of life that is comfortable, dignified, and appropriate given the current and predicted situation.
RESOURCES FOR PATIENTS
Please review these resources and share them with your patients. Video resources are also provided as patients connect with narratives rather than statistics.
“How to Talk to your Loved ones and Your Healthcare Team about your wishes and goals if you become sick with COVID-19” by Dr. Amy Tam CCFP(PC).4 A larger font version is also available here.5
COVID-19 Worst Case Scenario Video Series:
- What symptoms will I get?8
- Facts & figures to help you decide what to do9
- Talking about dying10
- Planning ahead to get the care that I want11
- How to have a conversation about the worst case12
Prepare a medical information sheet for yourself and loved ones
This ensures that healthcare providers have access to information that can help save your life in an emergency (COVID-19 related or not). The infographic below demonstrates what information you should provide, and you can find a fillable template here.
You should include:
- List of your medications
- Current and past medical conditions and surgeries
- Allergies (and what happens if you are exposed)
- Doctors you see, including their specialties
- Emergency contact/proxy decision maker in case you are unable to make medical decisions for yourself
- Living Will if available
Stress from dying in intensive care is significantly higher than any other setting and yet 20% of people in the United States will die in intensive care.13 In fact, 75% of Canadians (in a 2018 survey) showed that if they had the choice, they would prefer to die at home.14 You have a choice regarding where and how you die; intensive care is not the only option, but these wishes need to be made known to family and your healthcare providers.
See this quick COVID-19 specific shared decision making tool.15 It can act as a quick reference to determine your risk level if you get COVID-19 and determine how you would like to be treated.
If you have a living will already:
Make sure your emergency contact, family, or proxy decision maker are aware of your wishes and have a copy. By discussing your wishes they can be enacted.
Ask your loved ones:
What are their end of life wishes?
If they couldn’t speak for themself, who would they want to speak for them? Speak Up Ontario is an excellent resource with Ontario specific information on how to formally identify a substitute decision maker.16
It may feel daunting to broach the topic (see Death Over Dinner to help17) but discussion now prepares for the best end of life. Both patient and family satisfaction after these discussions has been found to be extremely high.
As Michelle Knox, a TedTalk speaker who lost her father to progressive illness, says:
- “Life would be a lot easier if we talked about death now while we are healthy–instead of waiting until we are too emotional, too ill, or too physically exhausted”
- “If you plan for death then your survivors will know how to experience a healthy bereavement. Without fear or guilt of having failed to honour your legacy.”
- “My heart is heavy with loss and sadness but not regret…(I) know what dad wanted and (I) feel at peace knowing I could support his wishes”
The full TedTalk on her experience planning end-of-life wishes for a loved one can be found here.18
How to create an advanced care plan or living will if you haven’t yet:
Formal instructions can be found here.19
How to get a “Do Not Resuscitate” confirmation form and sign it:
A DNR order means that no cardiopulmonary resuscitation (CPR) interventions will be initiated based on your wishes. Comfort care will still be provided.
You must meet with a healthcare professional (M.D., R.N., R.N.(EC), R.P.N.) to have them fill out a “Do Not Resuscitate Confirmation Form”. After the form is completed your healthcare professional will provide you or your substitute decision maker with a copy. Copies of the form can only be made when it is fully completed.
The best place to keep the completed form is prominently displayed on your fridge. This is the first place that paramedics or firefighters will look in case of an emergency so that they can honour your wishes.
For more information regarding the DNR Confirmation Forms, how it should be filled out by healthcare providers, and commonly asked questions, click here.20
Healthcare providers can also obtain a supply of DNR Confirmation Forms.21
It is not possible to complete the forms online since there is a unique serial number that is imprinted on each form.
RESOURCES FOR PHYSICIANS
Palliative and end-of-life care training has been identified as an area of need within Emergency Medicine.22 As an early release from the CMAJ, “Pandemic palliative care: beyond ventilators and saving lives” reviews the importance of palliative care during a viral pandemic.23 It outlines the core components of a plan specific for COVID-19 including a triage tool for palliative care referral (see below), components of palliative care kits (see below), and suggested language for care discussions.
“All front-line providers should feel comfortable using symptom-targeted opioids early for dyspnea without waiting for respiratory failure to develop. Breathing is essential for life, but respiratory distress is not.”23
CAEP Quick Resources for COVID-19 End of Life Care
- Brief handout on end-of-life medications & flowchart for approach to withdrawal of mechanical ventilation for COVID-1924
- Palliative Care Committee – End-of-life care in the Emergency Department for the patient imminently dying of a highly transmissible acute respiratory infection (such as COVID-19)25 – written by our amazing colleagues, mostly from Ottawa
Ontario Specific Conversation Guides for Different Patient Populations and whether Diagnosed with COVID-19 or not
Developed by Speak Up Ontario, an initiative from Hospice Palliative Care Ontario to increase awareness of Advance Care Planning and Health Care Consent. These conversation guides are based on existing resources and compiled to be compliant with Ontario legislation and include COVID-19 specific resources.16
COVID Ready Communication Playbook
Crowdsourced, easy scripts, and practical advice on how to talk about difficult COVID-19 topics. Based out of Seattle, one of the hardest hit cities in the United States. VitalTalk is a non-profit that delivers evidence based programs to improve communication skills for serious illnesses. This resource will be continuously updated.26
Triage, Justice & Resource Allocation
Based on predictions from March, millions of Canadians will become infected with COVID-19.27 During that time, early modelling (with no public health measures) estimated that hundreds of thousands would require ICU admission, vastly outnumbering both the number of available ICU beds and ventilators (as was the case in Italy).28 Physicians were bracing themselves for arguably one of the most challenging decisions–who gets access to a ventilator.
Most recent modelling for Ontario suggests a trajectory similar to South Korea (representing the best case scenario) and that current ICU ventilator capacity will be sufficient.2
However, there is increasing pressure to lift social distancing measures to support the economy. Experts agree that lifting all measures would result in a flood of cases in June. Time will tell with how the government balances these forces.
Should a worst case scenario occur, how can we ease the ethical weight in making the “toughest choice” (i.e. ventilator allocation)? Truog et al. (2020) suggest preparing triage committees consisting of physicians and leaders who do not participate in bedside care of the patient’s in question reduce the burden and bias of attending physicians. This maintains the trust of the public and lends strength in an overarching team goal of saving more lives.
Regarding medical resource allocation as a whole, Emanuel et al. (2020) discuss ethical principles of fair allocation29 including:
- Maximizing benefits (number of lives or years saved)
- Treating equally
- Promoting and rewarding instrumental value (prioritizing those that can save others or have saved others in the past)
- Giving priority to the worst off (sickest or the youngest people that will have lived the shortest lives)
In the context of COVID-19 they have six specific recommendations:
- Maximize benefits
- Prioritize healthcare workers
- Do not use 1st come 1st serve
- Be responsive to evidence
- Recognize research participation
- Apply same principles to both COVID and non-COVID patients
Two resources through NEJM:
- The Toughest Triage – Allocating Ventilators in a Pandemic 30
- Fair Allocation of Scarce Medical Resources in the Time of Covid-19 29
Websites and resources to help with strategies to approaching patients
- EM Ottawa blog31 – very ER focused
- Serious Illness Conversations Guide32 – pillar of the approach to goals of care and advanced care planning conversations
- 5-Minute Video Example33 of COVID-19 Goals of Care Discussion with a Family Surrogate
- Pallium Canada34 – Free Palliative Care resources and strategies to discuss advanced care planning for patients
Updated Extensive List of Resources Related to Palliative Care & COVID-19
The situation in Canada and around the world is rapidly evolving. Check back to this resource35 for a complete and up-to-date list.
CMPA – Medical Legal Tips to Consider
Please refer to this document36 for tips on providing quality end-of-life care from the CMPA. It includes DNR, advanced directives, and tips on what aspects to consider when it comes to end-of-life care.
Additionally, this brief article37 addressed why DNR forms are not entirely binding in Ontario (all MDs should check with their provincial rules).
Please refer to the CanadiEM ED Primer for additional resources and information regarding Advance Care Planning and Goals of Care
Acknowledgements: Thank you Dr. Jessica Ashbourne (PGY2), Dr. Jacqueline Carverhill (PGY1), and Dr. Sheila Russek (CCFP-PC Staff) for providing helpful palliative care resources. Thank you to Dr. Brendan Lew (PGY2) and Dr. Austin Zygmunt (PGY4) for providing current public health resources.
This post was copyedited and uploaded by Sonja Wakeling.
- 1.Fink S. The Hardest Questions Doctors May Face: Who Will Be Saved? Who Won’t? New York Times. https://www.nytimes.com/2020/03/21/us/coronavirus-medical-rationing.html. Published March 21, 2020. Accessed April 3, 2020.
- 2.Government of Ontario . COVID-19: Modelling and Potential Scenarios. Government of Ontario. https://files.ontario.ca/moh-covid-19-modelling-potential-scenarios-en-2020-04-20.pdf. Published April 20, 2020.
- 3.Gouvernement du Québec . Information and Recommendations for Montrealers. Gouvernement du Québec. https://santemontreal.qc.ca/en/public/coronavirus-covid-19/ & https://www.statista.com/statistics/1104709/coronavirus-deaths-worldwide-per-million-inhabitants/.
- 4.Tan A. How to Talk to Your Loved Ones & Healthcare Team about Your Wishes & Goals If You Become Sick with COVID-19 (New Coronavirus). Academic Blog of Dr. Amy Tan, MD MSc CCFP(PC) FCFP. http://amytanmd.ucalgaryblogs.ca/files/2020/04/Guide-for-Talking-about-Wishes-Goals-with-COVID-19-Handout-by-Dr.-Amy-Tan-v3.pdf. Published April 2020. Accessed April 2020.
- 5.Tan A. How to Talk to Your Loved Ones & Healthcare Team about Your Wishes & Goals If You Become Sick with COVID-19 (New Coronavirus). Academic Blog of Dr. Amy Tan, MD MSc CCFP(PC) FCFP. http://amytanmd.ucalgaryblogs.ca/files/2020/04/LARGER-FONT-VERSION-of-How-to-Talk-to-Your-Loved-Ones-Healthcare-Team-about-your-Wishes-Goals-if-you-become-sick-with-COVID-19-handout-by-Dr.-Amy-Tan-v3.pdf. Published April 1, 2020.
- 6.MacDonald Johnston J. Prepare for a good end of life. TED. https://www.ted.com/talks/judy_macdonald_johnston_prepare_for_a_good_end_of_life?language=en. Published February 2013. Accessed April 3, 2020.
- 7.Amery J. Coronavirus Worst Case Scenario Planning: Introduction. Youtube. https://www.youtube.com/watch?v=e4h4jmnBL9k&feature=youtu.be. Published March 22, 2020.
- 8.Amery J. Coronavirus Worst Case Scenario Planning: What symptoms will I get? Youtube. https://www.youtube.com/watch?v=ec2KBCcam3w&feature=youtu.be. Published March 22, 2020.
- 9.Amery J. Coronavirus Worst Case Scenario Planning: Facts and figures to help you decide what to do. Youtube. https://www.youtube.com/watch?v=LlESjZRiKjo&feature=youtu.be. Published March 22, 2020.
- 10.Amery J. Coronavirus Worst Case Scenario Planning: Talking about dying. Youtube. https://www.youtube.com/watch?v=otUex3ux68s&feature=youtu.be. Published March 22, 2020.
- 11.Amery J. Coronavirus Worst Case Scenario Planning: Planning ahead to get the care I want. Youtube. https://www.youtube.com/watch?v=37VCBXC93I8&feature=youtu.be. Published March 22, 2020.
- 12.Amery J. Coronavirus Worst Case Scenario Planning: How to have the conversation about the worst case. Youtube. https://www.youtube.com/watch?v=mMxFpfEjjmg&feature=youtu.be. Published March 22, 2020.
- 13.Kross E, Engelberg R, Gries C, Nielsen E, Zatzick D, Curtis J. ICU care associated with symptoms of depression and posttraumatic stress disorder among family members of patients who die in the ICU. Chest. 2011;139(4):795-801. doi:10.1378/chest.10-0652
- 14.CIHI . More Canadians could benefit from palliative care. CIHI. https://www.cihi.ca/en/more-canadians-could-benefit-from-palliative-care. Published September 2018. Accessed April 4, 2020.
- 15.NHPCO . Coronavirus Disease 2019 (COVID-19) Shared Decision-Making Tool. NHPCO. https://www.nhpco.org/wp-content/uploads/COVID-19-Shared-Decision-Making-Tool.pdf. Published March 19, 2020. Accessed April 1, 2020.
- 16.Speak Up Ontario . Covid-19 Resource Summary. Speak Up Ontario. https://www.speakupontario.ca/. Accessed April 6, 2020.
- 17.Death Over Dinner . Let’s have dinner and talk about death. Death Over Dinner. https://deathoverdinner.org/#intro. Published 2020.
- 18.Knox M. Talk about your death while you’re still healthy. TED. https://www.ted.com/talks/michelle_knox_talk_about_your_death_while_you_re_still_healthy. Published December 2017. Accessed April 1, 2020.
- 19.Speak Up Canada . Make M y Plan – Speak Up: Parlons en. Speak Up Canada. https://www.advancecareplanning.ca/making-your-plan/. Accessed April 6, 2020.
- 20.Ontario Ministry . Information Bulletin: Do Not Resuscitate Confirmation Form (DNRC). Selwyn Township. http://www.selwyntownship.ca/en/townshiphall/resources/DNRCInformationBulletin6011section2.pdf. Published January 2008. Accessed April 12, 2020.
- 21.Ministry of Health . DNR Confirmation Forn. Ontario Ministry of the Solicitor General. https://www.mcscs.jus.gov.on.ca/english/FireMarshal/Forms/form_DoNotResuscitate.html. Published January 3, 2020. Accessed April 12, 2020.
- 22.Baylis J, Harris DR, Chen C, et al. Palliative and end-of-life care education in Canadian emergency medicine residency programs: A national cross-sectional survey. CJEM. January 2019:219-225. doi:10.1017/cem.2018.470
- 23.Arya A, Buchman S, Gagnon B, Downar J. Pandemic palliative care: beyond ventilators and saving lives. CMAJ. https://www.cmaj.ca/content/cmaj/192/15/E400.full.pdf. Published March 31, 2020.
- 24.CAEP . End-of-life care in the ED for patients imminently dying of a highly transmissible acute respiratory infection (eg COVID-19). CAEP. https://caep.ca/wp-content/uploads/2020/03/EOLC-COVID-protocol.pdf. Published March 2020.
- 25.Hendin A, La Reviere CG, Williscroft DM, O’Connor E, Hughes J, Fischer LM. End-of-life care in the Emergency Department for the patient imminently dying of a highly transmissible acute respiratory infection (such as COVID-19). CAEP. https://caep.ca/wp-content/uploads/2020/03/EOL-in-COVID19-v5.pdf.
- 26.Vital Talk . COVID Ready Communication Playbook. Vital Talk. https://www.vitaltalk.org/guides/covid-19-communication-skills/. Published 2020. Accessed April 1, 2020.
- 27.Dunham J. COVID-19 could infect 30 to 70 per cent of Canadians: health minister. CTV News. https://www.ctvnews.ca/health/coronavirus/covid-19-could-infect-30-to-70-per-cent-of-canadians-health-minister-1.4850181. Published March 12, 2020.
- 28.COVID-19 ModCollab . COVID-19: Predicting Healthcare Resource Needs in Ontario. COVID-19 ModCollab. https://www.covid-19-mc.ca/.
- 29.Emanuel E, Persad G, Upshur R, et al. Fair Allocation of Scarce Medical Resources in the Time of Covid-19. N Engl J Med. March 2020. doi:10.1056/NEJMsb2005114
- 30.Truog R, Mitchell C, Daley G. The Toughest Triage – Allocating Ventilators in a Pandemic. N Engl J Med. March 2020. doi:10.1056/NEJMp2005689
- 31.Wong M. A How-To Guide to Goals of Care Discussions in the Emergency Department. EM Ottawa Blog. https://emottawablog.com/2019/04/a-how-to-guide-to-goals-of-care-discussions-in-the-emergency-department/. Published April 11, 2020.
- 32.Divisions of Family Practice . Serious Illness Care Program: Reference Guide for Clinicians. Divisions of Family Practice. https://www.divisionsbc.ca/sites/default/files/Divisions/Powell%20River/ClinicianReferenceGuide.pdf. Published May 27, 2016.
- 33.Back A. COVID goals of care. Vimeo. https://vimeo.com/401465080. Published March 27, 2020.
- 34.Pallium Canada . COVID-19 Response Resources. Pallium Canada. https://www.pallium.ca/pallium-canadas-covid-19-response-resources/.
- 35.International Association for Hospice and Palliative Care . Resources Relevant to Palliative Care and COVID-19. Global Palliative Care. http://globalpalliativecare.org/covid-19/.
- 36.CMPA . Providing quality end-of-life care. CMPA. https://www.cmpa-acpm.ca/en/advice-publications/browse-articles/2011/end-of-life-care-support-comfort-and-challenging-decisions.
- 37.CBC News . What you need to know about Ontario’s DNR rules. CBC News. https://www.cbc.ca/news/canada/kitchener-waterloo/resuscitate-confirmation-form-cbc-waterloo-region-hospice-judy-nairn-1.4294958. Published September 18, 2017.