e70 Journal of Pain and Symptom Management Vol. 60 No.

1 July 2020

COVID-19 Articles Fast Tracked Articles

Grief During the COVID-19 Pandemic: Considerations

for Palliative Care Providers
Cara L. Wallace, PhD, LMSW, APHSW-C, Stephanie P. Wladkowski, PhD, LMSW, APHSW-C,
Allison Gibson, PhD, MSW, LISW, and Patrick White, MD, HMDC, FACP, FAAHPM
School of Social Work (C.L.W.), Saint Louis University, St. Louis, Missouri, USA; School of Social Work (S.P.W.), Eastern Michigan
University, Ypsilanti, Michigan, USA; College of Social Work (A.G.), University of Kentucky, Lexington, Kentucky, USA; and Division of
Palliative Medicine (P.W.), Department of Medicine, Washington University, St. Louis, Missouri, USA

Abstract
The COVID-19 pandemic is anticipated to continue spreading widely across the globe throughout 2020. To mitigate the devastating impact of
COVID-19, social distancing and visitor restrictions in health care facilities have been widely implemented. Such policies and practices, along
with the direct impact of the spread of COVID-19, complicate issues of grief that are relevant to medical providers. We describe the relationship
of the COVID-19 pandemic to anticipatory grief, disenfranchised grief, and complicated grief for individuals, families, and their providers.
Furthermore, we provide discussion regarding countering this grief through communication, advance care planning, and self-care practices.
We provide resources for health care providers, in addition to calling on palliative care providers to consider their own role as a resource to other
specialties during this public health emergency. J Pain Symptom Manage 2020;60:e70ee76. Ó 2020 American Academy of Hospice and
Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Key Words
Grief, COVID-19, end of life, loss, communication, self-care, advance care planning

Introduction family or the possibility of the warm embrace from

loved ones. Social media feeds are full of devastating
The COVID-19 pandemic has disrupted usual expe-
storiesdfamilies denied opportunities to say goodbye
riences of grief and modifications of approaches to
before a death, or loved ones saying goodbye over
support grief are needed. Uncomplicated grief en-
phone/video, uncertain whether each communica-
compasses multiple responsesdemotional, cognitive,
tion is the last. Clinicians are isolating themselves
physical, and behavioraldthat are common reactions
from their own families indefinitely owing to worry
after a loss.1 We are all currently susceptible to multi-
about potentially spreading infection. Individuals are
ple losses dailydloss of financial security, loss of so-
urgently updating advance directives and wills, making
cial/physical connections, and loss of autonomy to
complex decisions on ventilation and resuscitation,
move freely in the world. Many individuals are also
and considering who will care for their children if
experiencing a loss of physical/mental health and
they die. Grief is inherently a normal part of this
general safety and autonomy. Others are isolated in fa-
myriad of COVID-19 experiences. Here, we provide
cilities where, owing to directives to limit physical con-
discussion to help palliative care providers consider
tact, families are not allowed to visit. For many
important aspects of grief related to the pandemic,
hospitalized patients, visitors are limited or pro-
how key practices of advance care planning, quality
hibited, regardless of a COVID-19 diagnosis. For
communication, and provider self-care can help miti-
bereaved individuals, funerals and burials are post-
gate that grief, and the necessary role of palliative
poned or held remotely, often without presence of

Address correspondence to: Cara L. Wallace, PhD, LMSW, Office 304, St. Louis, MO 63103, USA. E-mail: cara.wallace@
APHSW-C, School of Social Work, College for Public Health slu.edu
& Social Justice, Saint Louis University, 3550 Lindell Blvd, Accepted for publication: April 8, 2020.

Ó 2020 American Academy of Hospice and Palliative Medicine. 0885-3924/$ - see front matter
Published by Elsevier Inc. All rights reserved. https://doi.org/10.1016/j.jpainsymman.2020.04.012
Vol. 60 No. 1 July 2020 Grief Amid COVID-19 e71

care in serving as a resource to other specialties amid postloss depressiondall relevant factors in facing
this pandemic. death in the context of the COVID-19 pandemic.
The type6 and volume10 of losses a person experi-
ences also impacts the bereavement process and likeli-
hood for CG. Owing to COVID-19, it is not
Grief in Context uncommon for families and communities to experi-
The complex and rapid changes from COVID-19 ence multiple losses given the methods by which the dis-
impact processes which are best understood through ease spreads. In one study, among home hospice
a lens of grief (see Table 1). Traditionally, anticipatory patients, nearly half experienced high anxiety and/or
grief is the normal mourning that occurs for a pa- depression during the last week of life.11 However,
tient/family when death is expected.2 With the number symptom management and quality of care at end of
of COVID-19 deaths currently doubling within days,3 life is generally better in hospice compared to hospital
medical personnel are expecting to experience death deaths,8 suggesting that anxiety and depression may
at unprecedented rates. Viewing maps of global spread, be even higher at the end of life in hospitals. This seems
individuals can anticipate the virus coming closer, particularly likely with additional context that deaths
increasing distress. Experiences of death become during this time may be complicated by ethical deci-
more personal as COVID-19 affects communities sions in triaging resources,12 quick transitions between
broadly. Anticipatory grief results from uncertainty as ‘‘ill’’ and ‘‘dying’’ in previously healthy patients, and lim-
well as trying to make sense of what is coming. In itations in visitors who can be physically present at the
response to these projected numbers, hospitals are pre- bedside. While research cannot yet report on psycho-
paring and planning for a surge of patients with poten- logic processing at end of life during social isolation
tial limitations in necessary equipment, such as of the COVID-19 pandemic, one can reasonably extrap-
personal protective equipment, ventilators, and inten- olate that many are dealing with higher levels of anxi-
sive care unit beds. For patients and families, there ety/depression during this uncertain time. These
can be unsettled feelings of not knowing how disease likely contribute negatively to the quality of the dying
will progress or how they will be impacted by changing experience, which predicts experiences of CG.6
hospital and facility policies. These experiences that Individuals may also feel they are experiencing dis-
occur before death have a lasting impact on grief expe- enfranchised grief, when grief is not publicly mourned
riences of loved ones and providers alike.4e6 or socially sanctioned by the larger community.13 For
In response to the spread of the COVID-19 example, when an individual has not followed the so-
pandemic, communities have begun implementing cial or mandated ‘‘rules’’ to limit exposure and be-
large-scale ‘‘stay-at-home’’ orders, which in many cases comes infected or spreads illness to others, feelings
are mandated by local or state leaders. Hospitals and of blame, anger, and sadness, among others, will be
other facilities are limiting or banning the physical entwined with their experience of loss of health.
presence of visitors. As deaths occur, the physical, This experience is heightened as language used in so-
mental, and social consequences of isolation of social ciety and media presents an emotional distance to
distancing may impact the potential for complicated whom will contract and/or die from COVID-19 infec-
grief (CG). While clinicians should not assume that tion. Patients can experience intense guilt and self-
all patients or family members are experiencing CG blame as some perceive only older adults and the
now during the height of the COVID-19 pandemic, immunocompromised are at risk for infection or se-
it is important to understand how current circum- vere outcomes. Bereaved individuals may grapple
stances may set the stage for CG to occur after death. with the fact that the person they lost was so much
CG can present symptoms such as recurrent intrusive more than a statistic and have difficulty fitting their
thoughts of the person who died, preoccupation grief within these societal messages. Disenfranchised
with sorrow including ruminative thoughts, excessive grief can also occur when families are unable to grieve
bitterness, alienation from previous social relation- in traditional practices of funeral services or being un-
ships, difficulty accepting the death, and perceived able to attend a loved one’s burial. Many funeral and
purposelessness of life.7 Under usual/pre-COVID-19 burial providers have discontinued services during the
circumstances, family members of patients who died pandemic, or greatly limited the number of attendees
in the hospital or intensive care unit were at a higher along with other restrictions, minimizing options fam-
risk for prolonged grief.8 In one national survey, the ilies have for mourning the loss of a loved one.
dying patient’s inability to say ‘‘goodbye’’ to family Though much of the grief outlined previously is
before death was significantly associated with CG.4 focused on that of patients and families, the experi-
Other studies show that severe preloss grief symp- ences of providers must also be considered. During
toms,5 lower levels of social support,5 lack of prepara- times of crises, many providers rely on strategies of
tion for the death,6 and guilt9 predicted CG and
 e72
Table 1
Contexts of Grief Amid Rapid Changes/Impact Due to COVID-19 and Recommendations to Mitigate Grief
Changes Due to COVID-19 Impact Context of Grief Recommendations

Pandemic/spread of disease Fear, worry, anticipation of spread Anticipatory grief for communitydwill Preparing patients/families for a likely death
Multiple losses in families; communities; someone I love be affected? When will the is critical part of anticipatory grief work,
long-term care facilities spread reach MY community? which can impact likelihood for
Individuals consider updates to advance Anticipatory grief for medical complicated grief. Utilize communication-
directivesdconsiderations for ventilation personneldplanning for the ‘‘surge’’ based management, including
and resuscitation Type6 and volume10 of losses a person recognizing, responding, and validating
experiences can impact complicated grief. emotional responses, to address
Social distancing or ‘‘stay at Loss of financial security, loss of social/ Overall, grief is an inherent part of our anticipatory grief.2
home’’ orders physical connections and support, loss of experiences due to the breadth of losses Approach difficult conversations directly and
autonomy to move freely in the world individuals are experiencing to ‘‘normal’’ do not shy away from discussing emotions,
Limitations in visitors or banning physical life. grief, and overall patient and family
presence of family at bedside (in hospitals, Increase in likelihood for complicated grief distress during advance care planning
long-term care facilities) (CG) for bereaved family based on impact conversations.22
Survivors must quarantine based on as the following factors are associated with During advance care planning, include
exposure to loved one CGdinability to say ‘‘goodbye’’4, preloss discussions of desired ritual or spiritual
Changes to end of life practicesdhow grief symptoms5, lower levels of social practices and funeral/memorial plans.25
patients/family communicate/say support5, lack of preparation for death6, Connect patients/families to resources to
goodbye; communication between guilt.9 help them consider postdeath planning
patients & providers, between families & Disenfranchised grief can occur when an needs and provide/refer to additional
providers; individual does not follow social/ grief support through telehealth services.
Delays and limitations to funerals and/or mandated ‘‘rules’’ and becomes infected To enhance the role of self-care in

Wallace et al.
burials or spreads illness. overcoming accumulated stress and grief
Disenfranchised grief can occur when in providers, practice self-awareness.28
families are unable to grieve with normal Some self-care strategies to help individuals
practices of social support and rituals in cope with stress during an event include
burial and funeral services. the following: being able to take breaks
Increase in deaths, overburdening Ethical considerationsdtriaging of Anticipatory grief for patients, families, and disconnect from the disaster event,
of hospital systems resources, consideration of DNRs providersdexperiences that occur before feeling prepared and informed in
Providers may choose to isolate themselves death have lasting impact on grief4e6 facilitating their response role, being
from personal support systems to limit risk Quality of the dying experience can impact aware of local resources and services to
of exposure to family occurrence of complicated grief in refer patients to for additional recovery
Guilt may be experienced by professionals bereaved family. assistance, and having adequate
who are unable to work due to exposure/ Potential for moral distress or secondary supervision and peer support while
contraction of COVID-19 traumatic stress in medical facilitating response.31
personnelduse of avoidance,
compartmentalization can lead to burnout
and unresolved grief.14

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Vol. 60 No. 1 July 2020 Grief Amid COVID-19 e73

avoidance or compartmentalization to continue treat- In addition, EOL decisions inherently impact the
ing patients, which can lead to unresolved grief.14 It is grief experience for all involved13 and critical decisions
common for persons helping with response efforts to are being made daily for individuals facing COVID-19
experience secondary traumatic stress, a stress infection diagnoses. Clinicians must be ready to
response that can occur as a result of knowing or help- approach these difficult and uncertain conversations
ing a person(s) experiencing trauma. Symptoms directly and should not shy away from discussing emo-
include excessive worry and fear, feeling ‘‘on guard’’ tions, grief, and overall patient and family distress dur-
all the time, recurring thoughts, and physical signs ing ACP conversations.22 Ideally, ACP conversations
of stress.15 Within the additional context of chal- should occur early with the goal of avoiding un-
lenging ethical decisions and impacts of new policy de- wanted/unneeded hospitalizations and intensive treat-
cisions, moral distress may be another common ment.23 However, the rapid clinical decline of
experience for providers. Moral distress is ‘‘the phys- moderate/severe COVID-19 infection presents unprec-
ical or emotional suffering that is experienced when edented urgency in discussing goals of care, especially
constraints (internal or external) prevent one from with older patients with chronic disease.24
following the course of action that one believes is ACP with patients within weeks/days of life expec-
right.’’16 Moral distress is a significant issue facing crit- tancy should also include discussions of desired spiri-
ical care providers and is associated with burnout, tual practices and funeral/memorial.25 For
where providers experience emotional exhaustion caregivers, the unpredictable trajectory of illness, prac-
and depersonalization, or even dehumanization, of tical and emotional preparedness for death, and
the patients and families in their care.17 Personal chal- coping with fear of unknown factors and a future
lenges away from work, such as decisions to isolate without the care recipient all contribute to tension be-
oneself from personal support systems to limit risk of tween the present and an uncertain future.18 Connect-
exposure, or feelings of guilt for those who are quar- ing patients/families to resources to help them
antined due to overt exposure or their own diagnosis, consider postdeath planning needs and providing
may cause additional grief for providers. additional grief support is important. While forced
to disengage from traditional funeral and burial ser-
vices during the COVID-19 outbreak, many are
turning online to telecommunication-based alterna-
Recommended Practices to Mitigate Grief tives, which can be an effective means of extending
With COVID-19 contributing to increasingly diffi- services.26 In addition, many licensing boards have
cult circumstances and the potential for amplified been temporary lifting restrictions on how licensed
grief, health care clinicians need tools and resources professionals can facilitate telehealth and remote
to mitigate that grief for patients/families and to services.
cope with and process grief for themselves. Quality Health care clinicians are often trained to put aside
communication, advance care planning (ACP), and their own feelings and emotions to put patient well-
provider self-care are three recommended practices being and care first. During a time of a crisis, this focus
that can assist now in addressing this changed land- can be amplified, and the concept of self-care may feel
scape of grief. Table 2 outlines relevant resources counterintuitive. However, dealing with the personal
across these recommended practices. thoughts and emotions that arise during care is perti-
With the likelihood of fewer (or no) family allowed to nent to providing ongoing ethical care for patients
visit, clinicians must be open to having honest conversa- and families.27 This self-awareness, or the ability to
tions while exploring ways to offer connection. Helping attend to the needs of the patient, the overall work envi-
prepare for likely death is a critical part of anticipatory ronment, and ones own subjective experience can
grief work, particularly because lack of preparedness is enhance the role of self-care in overcoming accumu-
associated with postdeath CG.18 Anticipatory grief work lated stress and grief in providers.28 In fact, personal
with families is a crucial component in effective ACP19 awareness, along with inner and social self-care, is posi-
as participation in ACP can enhance outcomes for fam- tively associated with a health care professional’s ability
ilies during the bereavement period.20 Communication- to cope with death in their professional setting.29 Self-
based management, including recognizing, responding, care is of utmost importance to minimize potential for
and validating emotional responses, is one key strategy long-term outcome effects so that providers are able
for addressing anticipatory grief among critically ill pa- to continue caring for patients during this unprece-
tients and their families.2 Patients and families who are dented strain on the health care system.30 Some self-
provided opportunities for cognitive and emotional care strategies to help individuals cope with stress dur-
acceptance of death show better outcomes in quality of ing an event include the following: being able to take
life for bereaved family members six months after breaks and disconnect from the disaster event, feeling
the loss.21 prepared and informed in facilitating their response
 e74
Table 2
Resource List for Providers Navigating Grief Through the COVID-19 Pandemic
Topic Area Organization, Author(s) Title (With Hyperlink) Purpose/Description
33
Communication Vital Talk COVID-Ready Communication Skills Practical advice on how to talk about difficult topics
related to COVID-19
Serious Illness ConversationsdKelemen, Specific phrases and word choices that Resources include the following: helpful responses
Altilio, & Leff can be helpful when dealing with during times of restrictive visiting; guide to virtual
COVID-1934 family meetings; end-of-life topics that may arise;
supporting staff; team support
SWHPNadHalpern Working with families facing undesired Tip sheet of suggestions and considerations when
outcomes during the COVID-19 crisis35 communicating with families
Telehealth guidance CAPCb CAPC COVID-19 Response Resources36 Toolkit includes communication tips, symptoms
management protocols, palliative care team tools,
using telehealth, among other resources
Advance care planning Respecting Choices COVID-19 Resources37 Resources include the following: those to help
clinicians have conversations about treatment
preferences before a medical crisis; tools to
support specific treatment decisions in high-risk
individuals (CPR, breathing
assistancedventilator, user guide); resources for
high-risk individuals and their agents/loved ones
NHPCOc COVID-19 Shared Decision-Making Includes information related to likelihood of
Tool38 survival, along with symptoms, statistics and facts.
The tool also prompts a ‘‘decision point’’ about

Wallace et al.
advance directives
Aging with Dignity e Five Wishes Five Wishes Advance Directive39 A complete approach to discussing and
documenting care choices; document meets legal
requirements for directives in 42 states
Self-care CDCd COVID-19: Stress & Coping40 Provides tips and resources for reducing stress
Emergency Responders: Tips for Taking Includes information on preparing for a response;
Care of Yourself15 understanding and identifying burnout and
secondary traumatic stress; getting support; self-
care techniques; and resources
AAHPMe Resilience and Well-Being41 Includes self-care tips, videos and presentations,
articles, and other resources
University of Buffalo, School of Social Self-Care Starter Kit42 Includes foundational information about self-care;
Work self-care assessments, exercises, and activities; and
resources for developing a self-care plan
(including for use during an emergency)
a
Social Work in Hospice & Palliative Care Network.
b
Center to Advance Palliative Care.
c
National Hospice and Palliative Care Organization.
d
Centers for Disease Control and Prevention.
e
American Academy for Hospice and Palliative Medicine.

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Vol. 60 No. 1 July 2020 Grief Amid COVID-19 e75

role, being aware of local resources and services to refer 7. American Psychiatric Association. Diagnostic and statisti-
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Block SD, Prigerson HG. Place of death: correlations with qual-
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Disclosures and Acknowledgments Accessed March 26, 2020.
No competing financial interests exist. There are no 16. Pendry PS. Moral distress: recognizing it to retain
nurses. Nurs Econ 2007;25:217.
conflicts of interest to declare.
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