Now more than ever, access to palliative care is essential. The current pandemic in the United States has brought an influx of patients who are rapidly deteriorating because of infection with the novel coronavirus (COVID-19). The focus of care for many of these patients quickly shifts from intensive care interventions to concentrating on end of life care. Appropriate palliative care interventions and end of life treatments, therefore, are needed to improve the suffering of dying patients.1 Advanced practice providers (APPs) have an obligation to be informed and aid in critical decision making, especially when these decisions have to be made without consulting the patient’s family members.
In normal times, my practice focuses on treating oncology patients where advanced care planning can be done over repeated visits and discussions. However, in a crisis such as this, advance care planning may need to be performed on an emergent basis. Understanding what encompasses the focus of palliative care is important. There are many misconceptions as to what palliative care truly is; it is not end of life care or hospice nor is it giving up on the patient. Palliative care is supporting a patient and their family throughout any chronic illness.
Palliative care as described by Hawley is a way of caring for people with life-threatening illnesses that puts the focus on enhancing quality of life.2 Palliative care addresses patient needs within the physical, social, psychologic, and spiritual domains. It uses 3 main components:
- Meticulous prevention and management of symptoms, including pain
- Excellence in communication, in discussion of goals of care and advance care planning
- An extra layer of support for practical needs, particularly with respect to care provided within the patient’s home.
In palliative care, we need to consider that if no effective treatment is found for the patient’s condition, further decisions will have to be implemented regarding recurrent hospitalization’s and persistent treatment with intensive care. With limited resources available, it is important to evaluate the patient’s condition and how they are presenting. To increase the numbers of lives saved, the objective needs to be on the assessment of patients that may have the highest probability to benefit from this intensive care.
Communication with patients and families, as well as constant reassessment of goals of care, is crucial. It is especially important to ensure families are informed when patients take a turn for the worse and may potentially die.3
At present, palliative care is equally as important as is critical care. Goals of care (GOC) discussions and treatment plans that are in alignment with this is the ultimate goal of the palliative care provider.4 Powell and Silveria state that patients and their families at the peak of the pandemic will encounter symptoms, emotional distress, and decision-making in the challenge of uncertainty and limited options.3 No one is more prepared to handle these needs than providers on palliative care teams.
In a crisis, this may be difficult to assess. Present barriers include emotional status of the patient and family, family intervention or disagreement, and a lack of prior relationship between providers. Nouvet et al describes categories of patients identified as being5:
- Persons who were previously healthy but who became critically ill or injured by a disaster or high-fatality infectious disease
- Individuals who prior to the crisis were highly dependent for their survival on intensive medical care or with pre-existing life-threatening illnesses (e.g., on ventilator, dependent on dialysis, with advanced cancer)
- Individuals in palliative and hospice care when a disaster strikes
- Those with chronic illnesses or comorbidities whose health deteriorates as a result of a crisis
- Individuals who require symptom control and supportive care while they await curative medical attention
- Any individuals likely to die when triaged out of curative medical care due to scarce resources.
As this list suggests, defining palliative care needs within a crisis is far from straightforward. It requires considering factors that can increase different patient populations’ vulnerability to a shortened life. In crisis settings, there may be limited or no reliable data on disease and/or who is vulnerable to dying within the crisis-affected population before or during the emergency, noted Nouvet et al.4 It is one thing to list the categories of individuals who might require palliative care in a crisis and quite another to identify those individuals and quantify their needs amid a crisis.
Limited healthcare resources can also impact curative options and palliative care that can be provided. As the focus may be on the immediate life-saving measures that will result in long-term survival, resources are typically diverted away from the chronically ill or otherwise vulnerable patients, such as the frail, elderly, or individual’s dependent on healthcare services before such a disaster.6
Powell and Silveria recommend that palliative care consult teams should make themselves available by phone for coaching primary teams through the issues relating to seriously ill COVID-19 patients.3 They should prepare to provide ‘crash courses’ in palliative medicine to all providers on the front line. It is also important for all providers to offer reassurance to patients and families that they will not be abandoned and that patients will continue to receive compassionate care regardless of candidacy for life-sustaining treatment.
Taking this into account makes addressing GOC with all patients so important in the plan of care for all patients. Patients who have timely end-of-life discussions addressing GOC and understanding of their illness are more likely to be satisfied with their quality of care, receive care that is closer to their stated preferences, and die at the place of their choosing; because of these discussions, family members may also be less distressed.4
Our role as palliative care providers has always been to provide the best possible care to all of our patients. We continue to do so during COVID-19. If we can increase the delivery of palliative services to all of our patients, they will do better no matter the situation. Patients do best by having access to both disease-modifying treatments and palliative care simultaneously.2
This is the beginning of the GOC conversation; doing so fosters communication, empathy, and comprehensive care in an uncertain time. Provide supportive care throughout the continuum of illness no matter how long that timeframe may be. Both patients and providers share the commonality of hope, resilience, and ability to overcome any obstacle including disease. By asking the patient, “What is important to you?”, you may discover that the response may surprise you and guide you toward a personalized plan of care.
- Bertè R, Cassinelli D, Vignola V, et al. Covid-19: the role of palliative care had to be adapted to manage this “ultra-emergency.”. BMJ Opinion. https://blogs.bmj.com/bmj/2020/03/31/covid-19-the-role-of-palliative-care-had-to-be-adapted-to-manage-this-ultra-emergency/.Published March 31, 2020. Accessed May 7, 2020.
- Hawley P. Barriers to access to palliative care. Palliat Care.. 2017;10:1178224216688887.
- Powell VD, Silveria MJ. What should palliative care’s response be to the COVID-19 epidemic? J Pain Symptom Manage. Article in press.
- Saiki C, Ferrell B, Longo-Schoeberlein D, Chung V, Smith TJ. Goals-of-care discussions. J Community Support Oncol. 2017;15(4):e190-e194.
- Nouvet E, Sivaram M, Bezanson, K, et al. Palliative care in humanitarian crises: a review of the literature. Int J Humanitarian Action. 2018;3(5).
- Kunz R, Minder M. COVID-19 pandemic: palliative care for elderly and frail patients at home and in residential and nursing homes. Swiss Med Wkly. 2020;150:w20235.