To the Editor: A woman with a history of obesity, diabetes, cardiovascular disease,
and end‐stage renal disease was admitted to an overburdened New York hospital with
respiratory distress due to coronavirus disease 2019 (COVID‐19). At the time of admission,
she was unable to speak for herself, and given restrictions on visitation, it took
much effort to find her daughter who did not know the patient's medical wishes. Before
COVID‐19, the daughter had accompanied her wheelchair‐bound mother to all of her appointments
including visits with an endocrinologist, cardiologist, primary care doctor, and physical
therapist in the preceding 3 months, as well as dialysis appointments three times
a week. However, advance care planning (ACP) had never been discussed.
The COVID‐19 pandemic has clinicians, health systems, and governments working on multiple
fronts to keep people from getting sick and care for those who fall ill. Accordingly,
much attention has been given to increasing hospital capacity, ramping up testing,
and developing therapeutics or a vaccine. Alongside these efforts, we see an urgent
need to prepare older adults and other at‐risk populations for the possibility of
severe illness through a massive upscaling of ACP in the outpatient and nursing home
setting. To do this will require a concerted effort by all clinicians and allied health
professionals.
The process of ACP, which involves selecting a surrogate decision maker, documenting
wishes, and having conversations about what is important in one's life,1 —is our best
mechanism for aligning treatment with patients' goals. Although planning before possible
decisional incapacity is always important, the strict visitor restrictions implemented
to reduce in‐hospital spread of COVID‐19 compound the urgency for ACP. With nobody
at the bedside to speak on their behalf, incapacitated COVID‐19 patients risk receiving
goal‐discordant care as overstretched clinicians are forced to act quickly.2
Our recent research shows that most older adults at risk for morbidity and mortality
due to COVID‐19 have not planned adequately before admission to an intensive care
unit (ICU).3 For patients, the legal language used in most advance directives (ADs)
and state‐to‐state variation in legal requirements, such as the need for witnesses
or a notary, are all barriers to ACP, particularly in marginalized populations.4 Current
physical distancing recommendations have only made the ramifications of these legal
requirements more challenging. For healthcare professionals, many remain uncomfortable
discussing ACP or feel that ACP is someone else's job.5
These barriers must be addressed to permit national upscaling of ACP immediately.
The surge of COVID‐19 is upon us, with hospitalized older adults bearing the brunt
of the morbidity and mortality and growing severe acute respiratory syndrome coronavirus
2 (SARS‐CoV‐2) transmission in nursing homes. Clinicians working in acute care settings
are desperate for information about how to best care for the patients in front of
them. For example, one of us recently admitted a nearly 100‐year‐old patient with
dementia to the ICU with presumed COVID‐19 and had to resort to a midnight call via
a telephone interpreter to discuss intubation with a family that was ill prepared
to participate in decision making. This should be a never event. We must identify
such at‐risk persons and help them and their families plan ahead. Doing so will help
mitigate the cumulative moral distress to families and to our workforce that comes
with inadequate ACP.
With nonessential outpatient visits and procedures canceled, many clinicians and allied
health professionals have been wondering how to help those on the frontlines. Engaging
outpatients in ACP is one important way. We detail here how to conduct an efficient
high‐yield ACP conversation and suggest mechanisms for clinics, health systems, and
governments to foster ACP.
Proposal 1: We need all clinicians (eg, nurses, physicians, pharmacists, etc) and
allied health professionals (eg, dieticians, physical and occupational therapists,
etc), regardless of specialty and discipline, to help outpatients engage in ACP. This
includes those working in nonacute settings (eg, clinics, nursing homes, and dialysis
centers). These conversations can take place during any scheduled visit, whether in
person, by phone, or by video. Targeting initial ACP efforts toward older adults and
other persons at highest risk for severe COVID‐19 is a reasonable approach. However,
we believe all persons should be asked at least to identify a surrogate decision maker
because the risk for morbidity and mortality from COVID‐19 is universal.
Proposal 2: Clinicians can use a simple three‐step approach to begin ACP (Table 1).
This includes (1) asking patients to select a surrogate decision maker, (2) encouraging
them to talk to their surrogate about what matters most and record their wishes in
an AD, and (3) documenting patient's wishes in the medical record. Documentation is
crucial given that current physical distancing efforts may impede access to and completion
of ADs. Importantly, clinicians must follow local documentation practices to ensure
the ACP information is readily retrievable by others, not buried in progress notes.
Table 1
Approaches to Simple, Efficient Advance Care Planning for All Health Professions
Step
Action to take
Sample phrasings
1
Ask about a surrogate decision maker
“I wanted to take a moment to talk to you about advance care planning. This involves
choosing an emergency contact and describing what is most important in your life.”
“Is there someone you would trust to help make medical decisions for you if there
ever came a time you could not speak for yourself?”
If yes: “That's great. Now is a good time to tell or remind them that you chose them
for this role and what is important to you. That way they can be the best advocate
for you if needed.”
If no: “It is OK if you cannot think of someone right now. If someone comes to mind
in the future, please let your medical providers know.”
2
Ask about an advance directive
“Have you ever completed an advance directive? This is a legal form that lets you
name your medical decision maker and describe your wishes for medical care.” Did your
doctor ever fill out a POLST form, a physician's orders about your wishes?”
If yes: “That's great. Do you remember what you wrote down? Do you still feel the
same way? Do you know where this form is?”
“The most important part is to now share the information in this form with your family
and friends. Remember to bring the form with you if you need medical care.”
If no: “This is OK. One place you can start is the website http://prepareforyourcare.org
[one example, use local preference] that has simple information and advance directive
forms for free. You can fill the form out on your computer, phone, or tablet, or download
and print.”
[Optional due to physical distancing]:
“The forms sometimes need extra witnessing or a notary to be legal. For now, it is
OK to review it and sign and date it. The most important part is that you discuss
it with your family and friends and medical providers.”
3
Document patient's wishes
Learn and use your hospital's standard documenting practices so that advance care
planning information can be quickly found by frontline providers when needed.
Some people will have very clear wishes about specific medical treatments, such as
whether or not they would want cardiopulmonary resuscitation. Most, however, will
not. The point of beginning ACP conversations in the outpatient setting is not to
force premature decisions about possible therapies but rather for patients to identify
a surrogate and articulate their values that others can later apply to in‐the‐moment
decisions.6 Patients may have additional questions about COVID‐19, their prognosis,
or health system capacity. Health professionals engaging in these upstream ACP conversations
can refer patients to their primary care physician or respond to questions using COVID‐19
communication resources (Table 2).
Table 2
Additional Resources for Exploring Patients' Goals and Values in the Setting of COVID‐19
https://www.capc.org/toolkits/covid-19-response-resources/
https://www.vitaltalk.org/guides/covid-19-communication-skills/
https://respectingchoices.org/covid-19-resources/
https://www.ariadnelabs.org/coronavirus/
Proposal 3: Health systems should leverage messaging capabilities, such as patient
portals, automated calls, or text messages to disseminate ACP materials and prime
patients for ongoing ACP discussions. Health navigators may help reach older adults
and other vulnerable populations with less access to digital communication. Messaging
campaigns should point patients toward freely available ACP tools for facilitating
conversations about goals and completing state‐specific AD.7 Electronic health record
triggers may also help lower the activation energy for initiating ACP by prompting
clinicians to discuss ACP with appropriate patients. If able, health systems should
allow patients to upload completed AD to the electronic health record.
Proposal 4: Hospitals and states should consider temporarily pausing legal requirements
for AD completion that run counter to physical distancing. This may include waiving
the need for witnesses and/or a notary, or allowing oral directives to be documented
in the outpatient setting. Furthermore, in cases where patients have clear wishes,
we should permit clinicians to complete a physician's order for life‐sustaining treatment
(POLST) during a phone or video visit.
COVID‐19 has upended life worldwide, throwing health systems into crisis and overburdening
the healthcare workforce. Soberingly, the worst may be yet to come, and even in cities
where the curve has flattened, COVID‐19 will be a menace for many months if not years.
Governments and health systems have moved mountains to increase capacity, streamline
systems of care, and promote physical distancing. Further efforts must include a broad
nationwide push to engage outpatients in ACP now, before a medical crisis, particularly
for older adults and others at high risk of a poor outcome of COVID‐19. The work of
scaling ACP will not be easy, but it is of utmost importance. We need all hands on
deck.