As COVID-19 continues to smolder and flare around the world and across the U.S., hospitals are bracing for ventilators in short supply and drafting guidelines for the rationing of resources.[i] Federal and state governments are taking action to slow the spread of the disease. With unconscionably limited personal protective equipment, a lack of directed and successful treatment for the disease, and the ongoing risk to hospital workers, many hospitals have implemented no-visitor policies.[ii], [iii], [iv] Increasingly, this means that patients at the end of their lives, whether dying from COVID-19 or from something else, are often dying alone in hospitals and long-term care facilities.
On the oncology service during my third year of medical school, I witnessed with heart-wrenching frequency discussions of end-of-life preferences and prognostications, conversations had with varying degrees of urgency, preparation, and success. Almost uniformly, close family and friends helped shape and balance theses conversations and acted as advocates for their loved ones. When translators are scarce or when nursing staff is stretched too thin, family and friends are essential for communication between patients and the care team. I have seen the impact of compassion and kindness from providers and the strength of support from loved ones. With the increasing illnesses that we will likely be seeing in the coming days, we cannot lose sight of caring as we provide care.
The goal of palliative care is to address and manage symptoms of physical, psychosocial, and spiritual suffering experienced by patients and their families. In addition to alleviating suffering, making decisions about quality of life and patient and caregiver goals are central concerns of palliative care. Palliative care teams are especially adept at managing symptoms, reassessing care, and supporting and communicating with patients and families.[v] They are uniquely qualified to help patients and families navigate confusing and distressing circumstances, all the more acutely needed amidst COVID-19.[vi]
In the uncertain setting of this pandemic, the end of life is coming suddenly and unexpectedly for many people.[vii] All of us, especially the elderly and those with serious underlying medical conditions, must talk about end-of-life preferences—Who do you want making decisions for you if you are not able to do so? Is invasive and aggressive treatment aligned with your goals?—and face this pandemic prepared to make difficult decisions.
For those concerned that end-of-life planning seems premature or a sensationalized response out of proportion to the current circumstances, consider that these conversations are almost always appropriate even outside of a pandemic. Certainly, circumstances and preferences change, but the healthcare system will always do patients a disservice if the people caring for them do not have an understanding of what kind of care they may want.
Though hospitals are shifting focus and resources to the COVID-19 response, people are also suffering and dying from cancer, heart failure, kidney disease, and other life-limiting illnesses. If rationing of ventilators and intensive care comes to fruition, these patients may not be a priority. Here again, compassionate discourse with patients and families about prioritizing comfort and reducing risks will be crucial.
Public health proponents and all levels of government are working hard to try to stop the spread of the novel coronavirus and protect the public. For those who are already ill or who may become ill, we all have a duty to maintain the basic tenets of healthcare and provide for their comfort and dignity to the best of our abilities.
Around the world, non-medical facilities are being converted to care for COVID-19 patients.[viii] Italy and the UK have banned funerals, several U.S. states have followed suit.[ix] Hospitals have severely restricted visitation; some making exceptions for companions when the end of life is imminent, some instead trying their best to use technology to support families. Nursing homes and long-term care facilities have disallowed outside visits. Social media and public news outlets are overrun with stories of people saying goodbye to loved ones from afar. To add to the confusion and concern, policies vary day-by-day, facility-by-facility, state-by-state.[x] This is far from ideal.
Hospital policies and exceptions for visitations should be more uniform. Hospitals should allow one to two visitors, with requisite prescreening and provision of personal protective equipment, for patients approaching the end of life. For patients with family and friends who are also ill or who are otherwise unable to be at the bedside, every effort should be made to provide assistive technology to keep people in contact with their loved ones. Hospitals also must ensure that sufficient translators, patient advocates, and other support staff are present to take on the increasing demand. Nursing homes and long-term care facilities must have the capacity to manage increased comfort-care needs to ensure patient safety and reduce the need for hospitalization.
Hospitals and professional societies have been offering guidance on navigating healthcare decision-making in the setting of COVID-19; all providers, not just palliative care specialists, who are seeing patients virtually or in person should engage in advance care planning discussions with all of their patients. All of us should have these conversations with our loved ones.
In these extraordinary
times, amid ever-changing recommendations, isolation, and overwhelming medical
need, care and compassion must remain a priority. Palliative care services must
be increased. Patients at the end of life must be allowed to have family or
friends present, even if in a limited capacity. We can easily get lost in the
numbers and in the incomprehensible demand for resources. In addition to all of
the hardship of the last several weeks, we have also witnessed extraordinary
kindness and support. We will come out on the other side of this pandemic; continued
compassion and careful consideration will allow us to do so confident that our
friends, families, and neighbors affected by these circumstances maintain their
dignity, comfort, and humanity.
[i] Muoio D, Eisenberg A. New York hospitals rationing ventilators, retrofitting equipment amid crush of coronavirus. Politico. April 2, 2020. https://www.politico.com/states/new-york/albany/story/2020/04/02/new-york-hospitals-rationing-ventilators-retrofitting-equipment-amid-crush-of-coronavirus-1270790
[ii] Visitor Policies, Brigham and Women’s Hospital. https://www.brighamandwomens.org/patients-and-families/visitors/visitor-policies
[iii] Coronavirus (COVID-19): Latest Updates. Massachusetts General Hospital. Accessed April 4, 2020. https://www.massgeneral.org/news/coronavirus/coronavirus-latest-updates#visitor
[iv] Kirby, H. No visitors allowed at ProHealth Waukesha and Oconomowoc Memorial hospitals and their NICUs (with specific exceptions). Milwaukee Journal Sentinel. April 3, 2020 https://www.jsonline.com/story/communities/lake-country/news/oconomowoc/2020/04/03/coronavirus-covid-19-no-visitors-waukesha-oconomowoc-memorial-hospitals/2941935001/
[v] Rome RB, Luminais HH, Bourgeois DA, Blais CM. The Role of Palliative Care at the End of Life. 2011. Oschener J. 11(4):348-352
[vi] Ballentine JM. The Role of Palliative Care in a COVID-19 Pandemic. CHCF Blog. March 20, 2020. https://www.chcf.org/blog/the-role-of-palliative-care-in-a-covid-19-pandemic/
[vii] WHO. Coronavirus disease 2019 (COVID-19) Situation Report-75. https://www.who.int/docs/default-source/coronaviruse/situation-reports/20200404-sitrep-75-covid-19.pdf?sfvrsn=99251b2b_2
[ix] Kiley B. Funeral prohibited in Washington state in effort to slow coronavirus spread. The Seattle Times. March 19, 2020.
[x] CDC. Coronavirus Disease 2019 (COVID-19): Clinical Guidance Accessed April 4, 2020. https://www.cdc.gov/coronavirus/2019-nCoV/hcp/index.html