Having honest conversations with long-term care residents about their end-of-life wishes should always be a priority for primary care physicians, specialists and facility clinicians. The COVID-19 pandemic illustrates the timeliness and value of these crucial discussions.
Around the world, heartbreaking news stories describe nursing home, assisted living and long-term care residents who are dying alone in their rooms or facilities, unable to receive visitors, physically disconnected from their family members, and without the support or warmth of their loved ones.
These stories of isolation and distancing emphasize the impact of COVID-19 on the long-term care industry and the residents and family members who rely on it. They are also stark reminders of what can happen when physicians, advanced practice registered nurses (APRNs), clinicians, specialists and facility staff are uncomfortable or uneasy about addressing residents’ and families’ preferences for care near the end of life. This is especially true if patients or residents face an advanced illness, are unable to communicate or update their advance directives, or are physically separated from those who otherwise would make decisions for them.
Just as powerfully, these COVID-19 scenarios reinforce the value of advance care planning, advance directives and goals-of-care conversations — not solely for the residents, but also for the staff members who care for them and the family members who worry about them.
Ask most clinicians why they opted for a career in healthcare, and they’ll say they were driven by a desire to help others. COVID-19 reminds us that to fulfill this mission, facility clinicians must be willing and prepared to have an open dialogue with long-term care residents and their families about their goals, values, and wishes for care. They must also understand how long-term care teams can honor patients’/residents’ desires, especially near the end of life.
At VITAS Healthcare, we believe speaking honestly with residents and families is essential, especially when the conversation involves difficult news or equally difficult decisions about patients’ preferences for the types of care and interventions they want — and do not want — as they near the end of life.
While 99% of physicians agree that conversations about advance care planning are important (Fulmer et al, Journal of the American Geriatrics Society), 68% say they have had no training in these challenging-but-necessary conversations, and 66% cite lack of time as a hindrance. Other reasons for not engaging in end-of-life conversations include lack of direction about the right time to hold them (60%), a sense that the discussion might be uncomfortable (51%), and not wanting their patients to give up hope (46%) by talking about advanced disease and their goals for care.
Hospice and palliative care specialists, however, know that honest, heartfelt conversations about disease, symptoms, and how lives should be lived are helpful throughout all ages and stages of a disease, illness, or resident’s life. As symptoms and life circumstances change, so can a resident’s opinions about what comes next and the definition of quality of life moving forward.
Goals-of-care conversations and advance care planning, in fact, are proven to support patient-centered/resident-centered care. Recent studies (El-Jawahri et al, Circulation) and (Patel et al, JAMA Oncology) show that advance care planning results in increased hospice utilization, fewer hospitalizations near the end of life, and fewer visits to the emergency department and ICU, all while minimizing the psychological and emotional toll for patients. Likewise, patients who engage in end-of-life conversations also have a better understanding of their illness and are more willing to complete the necessary preparations, such as living wills and healthcare power-of-attorney designations.
Ongoing conversations also support family members and caregivers, sparing them of the worry, guilt, or anxiety of having to make critical decisions or say final goodbyes over the phone, via video chat, or through a plate-glass door at the nursing home — or not at all. Advance care planning can avert the worst-case scenarios of wondering what a mother, father, or spouse would have wanted, if only the conversation had been held early or the clinician had provided clarity about prognosis and decline.
Physicians and clinicians who care for residents and patients in nursing homes, long-term care facilities, or assisted living communities can fill their gaps in knowledge about goals-of-care conversations by relying on any number of tools that serve as step-by-step guides. A prime example is the SPIKES protocol, developed by the University of Texas MD Anderson Cancer Center in Houston, Texas, and pioneered by Robert A. Buckman, M.D Ph.D. Its six-step format provides clear direction for honest, rewarding conversations about care preferences between physicians/clinicians and their facility residents/patients and families. Other resources for advance care planning and advance directives are available from the American Bar Association, The Conversation Project, Prepare For Your Care website at the University of California/San Francisco, and the Five Wishes document from Aging With Dignity.
Having a goals-of-care conversation is not about giving up or feeling like a failure. It is an act that honors long-term care residents and respects them for who they are. It is a powerful tool that helps residents and patients who are experiencing declining health identify and embrace their values, goals, and preferences for end-of-life care. It is an activity that can bring clinicians of all backgrounds and specialties back to their core mission to help patients.
Ideally, clinicians who engage in these conversations will know what their residents want in the face of a serious illness and can refer them to hospice care. Patients with COVID-19 or any other advanced illness can be cared for at home. There, they can experience quality of life near the end of life because they are in the place they prefer to be, with the people they prefer to be with.
No clinician should ever feel uncomfortable “having the conversation” about end-of-life care with patients and their families, especially when situations like COVID-19 demonstrate how quickly symptoms and prognoses can change. Just as they enroll in continuing medical education to keep their diagnostic and treatment skills sharp, clinicians can embrace supportive tools that improve their communication skills and help them extend the continuum of care to the end of life. They can also rely on hospice and palliative medicine colleagues who are available 24/7/365 to have the conversation for those who do not feel comfortable or capable of doing it well.
It may be difficult, but having upfront, honest conversations about end-of-life care is one of the most helpful things clinicians can do.
