Me Alyssa Katz, J.D., discusses important moral and ethical issues raised by the COVID-19 pandemic in nursing homes and long-term care facilities.
Nursing homes, long-term care facilities, and assisted living residences are generally inhabited by the infirm, elderly, or terminally ill. This population includes those transitioning from hospitals to home and requiring rehabilitation, those with dementia, those in need of assistance with daily activities, and those receiving end-of-life (hospice) care. At the outset of the COVID-19 pandemic, these facilities were put on lockdown. As a result, families and friends were unable to console or advocate for their loved ones, many of whom were unable to do so on their own.
Residents were neglected due to short staffing and contagion.[1] Although it is very distressing being unable to visit an ill or possibly dying loved one, the greater focus was slowing down the virus.
Moral and ethical issues arise from this situation. Can a “good death” be achieved during the quarantine? Can legal directives such as wills and health care proxies be respected? Can an individual’s end-of-life or care wishes be ascertained in the absence of such legal directives? What are the greater societal ethical issues around quarantine?
The issue of what defines a good death is discussed by Atul Gawande in his article “Being Mortal.” According to Dr. Gawande, a good death includes the following in the final days: independence, companionship, mindful attention, dignity, wisdom, joy, love, and freedom from pain.[2]
Legal directives such as wills, health care proxies, and state mandated forms[3] help facilitate one’s end-of-life wishes. Goals of care are discussed at many long-term care facilities in order to provide care that is consistent with the individual’s wishes. According to the American Medical Association guidelines for clinicians: “the wishes for end of life must be concordant with the legal directives.”[4] However, as if often the case, individuals have not given thought to what care they will or will not want at the end of their life. COVID-19 visitation and quarantine restrictions curtail this goal.
Moreover, even if some matters have been discussed and documented prior to the pandemic, there is little time to integrate preferences of those isolated and facing imminent death. The chaos from the massive sweep of COVID-19, shortage of staff, and limited availability of health professionals entering the facility make any of these thoughtful and compassionate measures unattainable. There is little time to incorporate desired measures such as companionship, pain management, and closure. In such cases, physicians should “elicit the patient’s values, goals of care and treatment preferences and capture them in the medical record.”[5] During the COVID-19 pandemic, this may be all that can be achieved.
The US government responded to some of these concerns. On March 13, 2020, the Center for Medicaid Service issued “Compassionate Care Guidelines”. Visitors can enter for end-of-life situations. Hospice care workers are considered health care workers and should be permitted to enter the facility.[6] However, states may pass stricter laws via legislature or executive order. As the virus entered a second and third wave, on September 11, 2020, the US Centers for Disease Control (CDC) updated its guidelines for people living in long-term care facilities or nursing homes. A highlighted section addresses surrogate decision making: “Caretakers: if your loved one is not able to ask questions or otherwise communicate with facility staff, please help them take recommended actions.”[7]
Bioethical issues also emerge from the quarantining of this vulnerable community. Respect for autonomy and justice are two ethical approaches in the context of medicine.[8]
Respect for the individual originates in the philosophy of Immanuel Kant. Respect includes the idea that persons should not be treated as a means to an end. Sealing off a nursing home is a way to stop the virus from spreading to the greater population and vice versa. Inside facilities, residents unable to tend to their own basic needs such as feeding and hygiene might be left in neglect without dignity. These barriers are a means to an end approach. Respect for the individual is subordinated to the larger need to slow down the virus.
The utilitarian or justice approach can be found in the philosophy of Jeremy Bentham. This approach would favor an outcome that would benefit the wider population. It is based on principles of justice. Sealing off nursing homes is arguably a better outcome for the greater population.
Still another viewpoint is the “lifespan approach” espoused by bioethicist Larry Churchill. The idea that elders should receive less aggressive care is discussed in his article “On Being an Elder in a Pandemic.”[9] According to Churchill, being elderly incurs duties others do not have and foremost among them is an obligation for parsimonious use of newly or scarce and expensive health care resources. In his opinion, ethics must be rethought at various stages of life.
It seems clear that advocacy and elevated awareness of these issues could lead to mitigation of the distress associated with quarantined nursing homes during pandemics and other explosive contagious events. We need to fail better next time.[10]
[1] Jack Healy, Matt Richtel and Mike Baker. Nursing Homes Becoming Islands of Isolation Amid Shocking Mortality Rate. New York Times. Last updated March 11, 2020.
[2] Atul Gawande. Being Mortal: Medicine and What Matters in the End. Metropolitan Books. October 7, 2014.
[3] Forms such as “MOLST” (Medical Orders for Life Sustaining Treatment).
[4] American Medical Association. Caring for patients at the end of life. https://www.ama-assn.org/. Last updated April 8, 2020.
[5] J. Randall Curtis, Erin K. Kross and Renee D. Stapleton. The Importance of Addressing Advance Care Planning and Decisions About Do-Not-Resuscitate Orders During Novel Coronavirus 2019 (COVID-19). JAMA Network. March 27, 2020.
[6] Centers for Medicare and Medicaid Services. CMS Announces New Measures to Protect Nursing Home Residents from COVID-19. www.cms.gov. March 13, 2020.
[7] Centers for Disease Control and Prevention. Infection Control for Nursing Homes. https://cdc.gov/coronavirus/2019-ncov/hcp/long-term-care.html. Last updated November 20, 2020.
[8] Tom L. Beauchamp and James F. Childress. Principles of Biomedical Ethics. 4th Edition.
[9] Larry Churchill. On Being and Elder in a Pandemic. The Hastings Centerg. April 13,2020.
[10] Samuel Beckett. Worstward Ho. Grove Press Inc. May 1984.
