This type of patient has become all too familiar during the COVID-19 pandemic: Mary is a 70-year-old woman who presented with symptoms she has had for several days, including fever, chills, cough and increasing shortness of breath. She tested positive for COVID-19 and is now on a ventilator in your intensive care unit.
Mary’s condition has steadily declined, and you realize you need some help. Although you have been providing primary palliative care, you now must transition to focusing on communication, symptom management and end-of-life care, as well as self-care. Fortunately, many resources are available.
The key to optimal care is communication. Ask Mary what she values most, and if she can no longer communicate, ask her family. Keep it simple: Ask, and do so early so you don’t miss the opportunity to discover what she values. Add these questions for patients to your COVID-19 toolkit: “What matters most to you?” “What gives you joy?”
Asking patients about their preferences for life-sustaining interventions can be challenging, but there are many resources to help. For example, End-of-Life Nursing Education Consortium (ELNEC) offers a communication guide and an overview for providing palliative care amid a disaster. The Center to Advance Palliative Care (CAPC) also has resources to support communication during the COVID-19 crisis.
Patients with COVID-19 need goal-focused symptom management tailored to their goals, especially at the end of life. Each care decision—to prone, to paralyze, to increase analgesia despite hemodynamic instability—should be driven by the goal of a comfortable death. ELNEC, CAPC and the Hospice and Palliative Nurses Association (HPNA) offer pharmacologic and nonpharmacologic strategies and other tools to help treat specific symptoms. Finally, AACN provides resources such as information on pronation for patients with COVID-19 and other palliative care tools for treating these patients.
Because of the high mortality rate among patients hospitalized with COVID-19, patients like Mary will need your best practice as they transition from aggressive treatment goals to comfort care. Your calm voice, your eyes saying you are witness to their humanity, matter at the deepest level as you nurse through the barrier of personal protective equipment. The grief and bereavement process for families begins with you. To help, call in chaplains, social workers and perhaps pet therapy, if that option is available. Always remember that you are the architect of the memory. There are also other resources to assist, such as the ELNEC “Final Hours” presentation for helping families with grief and loss and ELNEC’s “End-of-Life” online course.
While providing care during the COVID-19 pandemic, you must care for yourself too. Moral distress and ethical dilemmas—present in normal practice—are highly prevalent during a crisis. The AACN position statement on moral distress in a crisis offers recommended actions for individuals and institutions, as well as other resources. You can also visit AACN’s website. In addition, ELNEC provides a presentation on moral distress.
Mary and patients like her need your best critical care and palliative care skills, and they need you at the bedside providing patient-centered care or using technology to connect them with their families. Media stories may suggest patients with COVID-19 die alone. But they never die alone, because a nurse is always there.
What palliative care strategies have you used in your practice?