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Palliative File

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ANALYSIS HEALTH SERVICES CPD

Pandemic palliative care: beyond ventilators


and saving lives
Amit Arya MD, Sandy Buchman MD, Bruno Gagnon MD MSc, James Downar MDCM MHSc (Bioethics)

n Cite as: CMAJ 2020 April 14;192:E400-4. doi: 10.1503/cmaj.200465; early-released March 31, 2020

CMAJ Podcasts: interview in English at [Link] and in French at [Link]


cmajpodcasts/200465-ana-fre

T
he current novel coronavirus, severe acute respiratory syn-
drome coronavirus 2 (SARS-CoV-2) pandemic will likely KEY POINTS
strain Canada’s health care system beyond capacity, and • The severe acute respiratory syndrome coronavirus 2 (SARS-
many people are expected to die as a result. In this article, we review CoV-2) pandemic will likely strain our health care system beyond
capacity, and palliative care services will be needed across many
the challenges involved in providing palliative care in a pandemic.
different care settings, including intensive care units, hospital
In Italy, hospitals were forced to triage patients at an early wards, emergency departments and long-term care.
stage, with many older patients with comorbidities being denied • Shared decision-making between clinicians and patients is a
access to critical care resources.1 Indeed, even in a well-resourced core process in planning for the end of life; however, in a
country, the number of people denied life-sustaining treatments in pandemic, patient autonomy to choose life-prolonging
a pandemic could exceed the number who receive them.2 Some measures or location of death could be severely restricted as a
might view this as a failure of the system, but this would be unfair. result of public health directives and resource availability, and
some patients may necessarily be isolated at end of life.
No sustainable system of health care can hope to accommodate
such a surge in demand. But those who are denied access to critical
• Previous mass casualty events have taught us much about how
best to triage patients requiring care, and some of this work can
care have a right to expect high-quality palliative care in place of a be adapted to palliative care; but little has been written on how
ventilator. Failing to deliver palliative care in this context would to manage those who are not offered life-sustaining measures.
compound the tragedy of the pandemic and would arguably be a • We advise acting now to stockpile medications and supplies used
more substantial failure of the health care system. in palliative care, train staff to meet palliative care needs, optimize
our space, refine our systems, alleviate the effects of separation,
What are the challenges to providing have critical conversations and focus on marginalized populations
to ensure that all patients are cared for equitably.
palliative care during a viral pandemic?
• The SARS-CoV-2 pandemic has been tragic for many people
worldwide. Failing to provide Canadians with effective palliative
Palliative care focuses on 3 domains: management of patient symp- care would compound that tragedy.
toms; discussion of patient wishes, expectations and values via
advance care planning and articulation of goals of care; and support-
ing families of those with life-limiting illness.3 We expect the current at highest risk reside. The latter, however, are chronically under-
SARS-CoV-2 pandemic to produce a surge of patients who present staffed and may be undersupplied with the medications and palliative
with acute respiratory failure due to pneumonia, including symptoms care delivery systems needed to control severe symptoms.
such as fever, dyspnea, respiratory congestion, pain, nausea and delir- Shared decision-making between clinicians and patients is a
ium. The risk of death is higher for older adults, particularly those with core process in planning for the end of life; however, in a pandemic
frailty and comorbidities. Many people already have advance care scenario, patient autonomy to choose life-prolonging measures or
plans that stipulate that comfort measures are to be used if they location of death could be severely restricted as a result of public
become seriously ill. Other patients who are intubated and receiving health directives and resource availability. Patients may not be
mechanical ventilation but are not improving clinically will be extu- offered mechanical ventilation even if they desire it. Patients with
bated. A third group of patients may be denied ventilation because of coronavirus disease 2019 (COVID-19) may need to be confined to a
resource scarcity. Thus, in a viral pandemic, we expect the need for space (e.g., a ward for patients with the disease) that is not of their
palliative care to increase substantially. Moreover, palliative care ser- choosing. Furthermore, as epidemiological information about
vices will need to be available across many different care settings, SARS-CoV-2 is still evolving, prognostication could be quite diffi-
including intensive care units (ICUs), hospital wards, emergency cult, leading to uncertain outcomes for patients with COVID-19–
departments and long-term care facilities, where some of the patients associated pneumonia and respiratory failure. These situations will

E400 CMAJ | APRIL 14, 2020 | VOLUME 192 | ISSUE 15 © 2020 Joule Inc. or its licensors
likely cause considerable distress among patients, families and
Box 1: A palliative care pandemic plan for management health care teams.
of coronavirus disease 2019 (COVID-19; updated from Patients and families have emotional, psychological, social and
Downar and Seccareccia)2

ANALYSIS
spiritual needs, which often are addressed by an interprofessional
Stuff palliative care team approach involving a physician, nurse, social
• Stockpile comfort medications (morphine, haloperidol, midazolam worker and spiritual care worker. In a pandemic, patients dying of
and scopolamine) or symptom management kits, especially in long-
term care and community settings
viral pneumonia caused by SARS-CoV-2 may face isolation
• Suspend regulations that limit the availability and prescription of
because of visitor and travel restrictions. Furthermore, over-
injectable morphine and hydromorphone stretched health care teams may be unable to spend time at the
• Stockpile equipment to deliver medications, including bedside or to physically examine patients regularly, which could
subcutaneous cannulae and delivery equipment (e.g., pumps or negatively affect how patients perceive their care.4,5
syringe drivers)
• Stockpile personal protective equipment for palliative care
What can we learn from previous experiences
providers in long-term care and community settings
with providing palliative care during pandemics
Staff
and other humanitarian emergencies?
• Identify and mobilize all clinicians with palliative care experience
• Provide brief education for front-line providers on symptom
Previous mass casualty events, such as acts of terrorism, natural
management for acute respiratory illness, emphasizing the safety of
symptom-targeted opioids as an early option disasters or epidemics, have so overwhelmed health care systems
• Engage allied health to provide emotional support to patients, and that they could no longer provide equal access to care. Generally,
grief and bereavement support to family members these situations fall into 1 of 2 categories: “big bang” events such as
Space airplane or train crashes, and “rising tide” incidents such as viral epi-
• Optimize the use of beds in hospice and palliative care units, demics.6 The main goal of a coordinated response from public
particularly for patients who do not have COVID-19, via direct health and disaster-planning personnel is (appropriately) saving the
admission from the emergency department or community
maximum number of lives possible. Yet, despite a large body of liter-
• Identify separate wards and nonclinical areas in acute settings that
ature and experience with triage, little has been written on how to
might be appropriate for those expected to die — essentially
palliative care units for patients with COVID-19 manage those who are not offered life-sustaining measures. Indeed,
Systems one source of anxiety to both health care providers and members of
• Adopt a triage system to determine which patients require the public is the concern that triage processes might lead some
specialist palliative care consultation and which patients can be patients to receive no care at all or perhaps to have their lives ended
seen virtually intentionally without their consent.2 This would compound the tra­
• Maximize the use of telemedicine, both for efficiency and reducing gedy of triage in a pandemic — patients are first denied life-sustain-
infection
ing therapy and then they are not provided appropriate symptom
• Develop standardized order sets for acute, long-term care and
control. They die at the wrong time, in the wrong place, and they
community settings
• Form palliative care provider “groups” that can provide mutual support
may get the wrong care. Patients should always have access to high-
and coverage if a provider becomes sick or is overwhelmed quality palliative care as a basic human right,7 but, in a triage situa-
Sedation tion, our obligation to provide palliative care for those denied life-
• Be prepared to use palliative sedation for symptoms that are sustaining measures is increased. Past experiences with viral
refractory to common comfort medications epidemics, such as Ebola virus, severe acute respiratory syndrome
Separation (SARS) and HIV, have emphasized the integration of palliative care
• Enable video calling to connect patients with family members who as an essential part of any health care intervention.8–10
are separated because of travel and visitor restrictions
Communication How could palliative care be provided during
• People with frailty or comorbid illness should update their advance a pandemic?
care plans and indicate if they wish to avoid transfers to hospital or
critical care in the event of serious illness In 2008, the US Task Force on Mass Casualty Critical Care publisheda
• Before the expected surge in patients, providers should review framework for mass casualty events that comprised “stuff,” “staff,”
treatment plans when patients with advanced cancer, end-stage
organ failure, frailty or dementia are requesting life support or “space” and “systems,”11 which was adapted previously to the palli-
cardiopulmonary resuscitation. These patients are unlikely to ative care context.2 As experienced palliative care providers, we con-
survive and recover after an admission to an intensive care unit. sider it important to add 4 additional elements: “sedation,” “separa-
Equity tion,” “communication” and “equity” (Box 1).
• Palliative care providers should pay greater attention to patients Stuff refers to medications needed to provide comfort and the
who are marginalized. When the health care system is strained,
means to administer them to a large number of patients. This may be
systemic inequity will worsen.
problematic during the SARS-CoV-2 pandemic because regulations in
• Protocols for critical care triage may be implemented. Patients who
are denied critical care should be the top priority for palliative care. many countries preclude the creation of easily accessible stockpiles of
All patients must be cared for. opioids. In addition, long-term care facilities may not have sufficient
drugs on hand to treat more than a few patients for a long period, and

CMAJ | APRIL 14, 2020 | VOLUME 192 | ISSUE 15 E401


Table 1: Suggested contents of a symptom management kit and recommended starting doses for patients with severe
coronavirus disease 2019*
ANALYSIS

Symptom Treatment Recommended starting order Quantity for kit

Pain or dyspnea Hydromorphone 2 mg/mL 0.5–1.0 mg subct q30min p.r.n.† 10 vials


Nausea or delirium Haloperidol 5 mg/mL 1 mg subcut q2h p.r.n.‡ 10 vials

Sedation Midazolam 5 mg/mL 1–2 mg subcut q15min p.r.n.§ 10 vials


Secretions Scopolamine 0.4 mg/mL 0.4 mg subcut q4h p.r.n. 10 vials
Fever Acetaminophen 650 mg suppositories Administer q6h PR p.r.n. 10 vials
Urinary retention Foley catheter 16 French Insert catheter p.r.n. 1 kit
Dry mouth Mouth swabs Mouth care q.i.d. and p.r.n. 10 swabs
Note: PR = per rectum, p.r.n. = as needed, q4h = every 4 hours, q6h = every 6 hours, q15min = every 15 minutes, q30min = every 30 minutes, q.i.d. = 4 times per day, subct = subcutaneous.
*Adapted with permission from the Champlain Palliative Symptom Management Medication Order Form – Long-term Care.
†May start at 0.25 mg in a patient who is opioid naive, frail or older.
‡Relative contraindication in Parkinson disease.
§Higher doses can be used for refractory dyspnea.

these drugs may not be available quickly at the bedside. Preparing underused.18 During an epidemic, people try to avoid health care
and distributing sufficient numbers of “palliative medication kits’’ facilities, and normal referral and transportation systems are dis-
could help address this issue in any setting with substantial numbers rupted. Paradoxically, even though more people are dying, they are
of patients who might not survive.12,13 Ideally, these kits would include likely to die in circumstances that prevent them from accessing
opioids to alleviate pain or dyspnea, haloperidol for nausea or agitated hospice beds. Thus, new space may be needed to care for large
delirium, scopolamine for respiratory secretions, acetaminophen for numbers of patients who are dying of COVID-19–associated respira-
fever and chills, and midazolam for sedation (Table 1). Kits should also tory failure. This may be a specialized inpatient ward or a separate
include subcutaneous cannulae to deliver these drugs. Infusion sys- location adjacent to a hospital if transport to hospital is not feas­
tems (e.g., pumps or spring-loaded syringes) should also be available ible. Patients at home or living in a long-term care facility could be
for patients who need continuous medications. We suggest stockpil- cared for on site, although they may need to be sequestered from
ing sufficient numbers of kits in appropriate locations to ensure avail- others. A quiet and peaceful environment is recommended to sup-
ability for a variety of clinicians including paramedics, staff of long- port patient dignity in the last hours and days of life.
term care facilities and family physicians. Personal protective
equipment (PPE) should also be stocked and available to palliative
Box 2: Suggested triage tool for referral to specialist
care providers, especially those who visit patients at home. If com­ palliative care19
mun­ity providers are unable to provide treatment, their patients will
All clinicians providing palliative care should address physical,
present to acute care and exacerbate the crisis further.
social, financial and spiritual concerns
In terms of staff, because palliative care specialist teams cannot
Clinicians who are not palliative care specialists (hospitalists,
provide direct care to all patients who are dying during a surge, family physicians, internists, ICU physicians, nurse practitioners,
regional pandemic planning should include engagement of all nurses and paramedics) support the following:
interprofessional health care teams who have training and experi- • Identification and management of pain, dyspnea, agitated
ence in end-of-life care. Spiritual care staff and social work should delirium and respiratory congestion
be ready to manage common psychosocial needs such as grief and • Management of caregiver grief
bereavement. To build further capacity, focused education on end- • Discussions about prognosis, goals of treatment, suffering and
of-life care for patients with COVID-19 should be provided to front- resuscitation status
line health care providers such as primary care physicians, nurse Palliative care specialist clinicians support the following:
practitioners, paramedics, emergency department staff and nurses • Patients with complex or refractory symptoms
in long-term care facilities. This education should focus on the use • Patients who are denied access to critical care owing to a triage
and titration of opioids for dyspnea. Several studies highlighted the protocol, despite wanting aggressive care
safety and efficacy of opioids for treating dyspnea in advanced lung • Management of complex depression, anxiety, grief and
disease,14,15 improving respiratory mechanics in chronic lung dis- existential distress
ease,15 and reducing dyspnea and tachypnea without causing a rise • Requirement for palliative sedation therapy
in the level of carbon dioxide.16,17 All front-line providers should feel • Pre-existing opioid use disorder
comfortable using symptom-targeted opioids early for dyspnea • Patients with young children
without waiting for respiratory failure to develop. Breathing is
• Patients belonging to marginalized populations, including the
essential for life, but respiratory distress is not. homeless, incarcerated persons and Indigenous Peoples, who
A 2006 report about hospice use in Taiwan during the SARS out- are at risk of being underserved by the health care system
break found that palliative care space had the potential to be

E402 CMAJ | APRIL 14, 2020 | VOLUME 192 | ISSUE 15


New systems are needed, including a triage system to allocate Isolation measures, limitations on visitors and travel restrictions
clin­icians who could provide both primary- and specialist-level pallia- could lead to an increased sense of separation in patients who are
tive care (Box 2). Symptom management for most patients with nearing end of life and their families, which occurred during the

ANALYSIS
pneumonia is straightforward; a standardized order set (Table 1) and SARS epidemic in 2003.9 Since then, technological advances have
titration parameters ([Link] made video calling commonplace, which should help alleviate the
might reduce the need for referral to a specialist. Virtual visits can sense of isolation for many. We suggest that health care facilities
optimize efficiency and reduce risk of infection during a pandemic, offer smartphones, tablets or laptops to patients and provide free
and providers who are required to self-isolate or quarantine can con- Internet connections during the pandemic. However, some
tinue to provide care. Palliative care providers should also anticipate patients will not be able to use video calling because of their condi-
that they might become sick or be asked to cover for sick or quaran- tion, so social workers and spiritual health professionals should pri-
tined colleagues. As many palliative care providers work with little or oritize these individuals for support. In addition, should PPE be
no backup, this could have a dramatic effect on service provision. available, we suggest that family members be allowed to visit. We
Providers should form (or join) larger groups of palliative care provid- should also recognize that the effect of separation will not end
ers to help with cross-coverage and fluctuations in workload. This when the patient dies and anticipate the need to support family
would also facilitate collegial wellness check-ins. members through their disrupted grief and bereavement.
For symptoms of COVID-19 that are refractory to common com- Patients who are frail, older or have multiple comorbidities are at
fort medications, palliative sedation is appropriate. Palliative seda- the highest risk of death from SARS-CoV-2. Many of these patients
tion involves the use of sedatives at end of life to reduce a patient’s will not ask for aggressive life-prolonging measures such as mechani-
level of consciousness so that they are not suffering. Protocols are cal ventilation. Instead, they will prioritize honest communication,
accessible on the Internet,20 and, if available, palliative care consul- having time to say goodbye to loved ones and avoiding being a bur-
tants should support providers who are not experienced in provid- den on their family.21 In a situation of resource scarcity, patients and
ing this procedure. In our opinion, palliative sedation is preferable family members may be surprised to learn that they will not be
to medical assistance in dying (MAiD) for patients with severe offered life-sustaining measures. This will be a challenging scenario
respiratory failure caused by SARS-CoV-2, given the 10-day reflec- for many physicians, and a sensitive, supportive approach may help
tion period, number of witnesses and assessors required, and the reduce the distress of the patient and family (Box 3). However, if they
current requirement for full capacity to determine eligibility for are informed that their chances of surviving critical illness are poor,
MAiD. Attempting to honour an urgent MAiD request is likely to pro- many will choose not to experience the burdens of intensive care.22
long suffering in those who are imminently dying. Therefore, when assessing patients who are critically ill with respira-
tory failure caused by SARS-CoV-2, it will be important for all physi-
cians to ensure that any proposed treatment is clinically indicated
Box 3: Suggested language for physicians providing
support to a patient or family member who is denied
intensive care because of resource scarcity Box 4: Suggested language for discussing a treatment
Normally, when somebody develops critical illness, the medical plan with someone who is unlikely to survive a critical
team would offer them intensive care (a combination of illness, but whose current care plan would include life-
medications and machines to support their vital organs), provided sustaining therapies if indicated
that the medical team felt that they had a reasonable chance of You (your loved one) is currently suffering from _____. We have given
survival. However, because of the COVID-19 outbreak, we are you treatments, including ______ , but it seems as though your body
currently unable to offer intensive care to everyone who is critically is not responding well to them. If this continues, we would need to
ill. As a result, our hospital is working under triage guidelines, which consider the use of life-sustaining treatments to support your body.
means that we are offering intensive care only to those who are
most likely to be able to survive and recover from their critical I am very concerned about this scenario; although it is very easy
illness. You probably have heard about this in the news — all to start life-sustaining treatments, there are many scenarios where
hospitals in the region are working under these guidelines. we strongly prefer not to because the chances of recovery are poor.
That is usually when someone has chronic or incurable medical
I regret to inform you that we are unable to offer you intensive conditions, or their body has become weaker than it used to be.
care treatments at this time, as a result of the triage guidelines. The other concern is that these treatments can cause a lot of
Because of your medical condition, the likelihood that you would discomfort. Of course, many people are willing to experience
survive even with intensive care is considered to be too low for us discomfort if there is a reasonable chance of a good recovery. But if
to offer intensive care. The team has made this decision based on the treatments cause discomfort and the chances of recovery are
the following information:__________________. poor, we are very hesitant to offer those treatments.
I am deeply sorry about this situation. This is not the way we I would like to propose an alternative plan. I would like to
ordinarily make these decisions, and I can only imagine how you suggest that we continue doing the things that we are currently
must feel right now. I want you to know that even though we doing, including ________, in the hope that you might still respond
cannot offer intensive care, we will do everything else that could and recover. We do not want to take away that opportunity. But if
conceivably give you a chance of recovering, including: _________. your body does not respond and you get worse, I would suggest
And I promise you that, no matter what, we will also use that we do not start life-sustaining treatments. Instead, if you get
medication to treat any discomfort, such as pain or shortness of worse, I would suggest that we focus on keeping you comfortable,
breath. We know that when we treat discomfort appropriately, this understanding that any further escalation of care would probably
is not harmful and may actually help improve your condition. do more harm than good. What do you think about that?

CMAJ | APRIL 14, 2020 | VOLUME 192 | ISSUE 15 E403


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ANALYSIS

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Competing interests: Sandy Buchman is the president and a member Medicine and Emergency Medicine (Gagnon), Cancer Research Centre,
of the Board of Directors of the Canadian Medical Association. He has Université Laval, Québec, Que.; Division of Palliative Care (Downar),
received speaker fees from the University of Toronto and Cancer Care Department of Medicine, University of Ottawa; Department of Palliative
Ontario, and nonfinancial support from the Israel National Institute Care (Downar), Bruyère Continuing Care Ottawa, Ont.
for Health Policy Research. James Downar has received consultant
Contributors: All of the authors conceived the work, drafted the ori­
fees from Joule and honoraria from Boehringer Ingelheim (Canada).
ginal manuscript, reviewed it critically for important intellectual con-
Amit Arya has received honoraria from Pallium Canada for peer review
tent, gave final approval of the version to be published and agreed to be
activities for LEAP course materials. No other competing interests
accountable for all aspects of the work.
were declared.
Funding: This work was unfunded.
This article was solicited and has not been peer reviewed.
Acknowledgments: The authors thank Dr. Cecile Bensimon for review-
Affiliations: Division of Palliative Care (Arya, Buchman), Department of
ing and providing feedback on this manuscript, and Dr. Jill Rice for the
Family Medicine, McMaster University, Hamilton, Ont.; Division of Palli-
suggested order set in Table 1.
ative Care (Arya, Buchman), Department of Family and Community
Medicine, University of Toronto, Toronto, Ont.; Departments of Family Correspondence to: James Downar, jdownar@[Link]

E404 CMAJ | APRIL 14, 2020 | VOLUME 192 | ISSUE 15

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