Much speculation surrounds the “new normal” that will emerge in the wake of the COVID-19 pandemic. Efforts to ameliorate the shortcomings demonstrated in the health care system will hopefully inform recovery and rejuvenation. One area clearly spotlighted is the need for a much more robust palliative care workforce, as well as training for all clinicians in navigating difficult discussions surrounding death and end-of-life (EOL) care.
As pediatric oncologists, we live with dying. Nearly 20 out of every 100 children we treat will not survive. While many other specialties also experience the loss of life, few regularly face the cognitive dissonance of lives ending much sooner than expected. Through the challenge of guiding families facing such a painful reality, we have learned that addressing all potential outcomes, including death, early in a patient’s illness, brings incredible value to the patient’s care and family’s experience.
For me, Dr. Sprinz, a very early career experience demonstrated this reality. At a time when pediatric oncologists had no guarantee of cure for high-risk neuroblastoma, one of my patients was tragically diagnosed with the aggressive disease. This patient’s likelihood of long-term survival was less than 20%. Her parents, though devastated by the diagnosis, asked to be told everything. After hearing what “curative” therapy entailed and the dismal statistics, they requested that their daughter be allowed to go home with palliative care support, rather than cause her harm via high dose chemotherapy and stem cell transplantation. Over the next three months, the little girl received hospice care at home and regular support from the pediatric oncology staff. The parents never wavered in their decision and the patient died at home, peacefully, not in pain. Tragic as this girl’s passing was, her parents ultimately expressed gratitude for the support and understanding that they received. The details and honesty that the care team provided to them from the outset had allowed them to face their child’s death without fear or denial.
As the pandemic has shown, there is not only the need to discuss death early on in an illness, but also a requirement for society to acknowledge that death exists. Being unprepared for dying leaves indelible scars on all involved. Multiple retrospective studies examining preparedness for death and outcomes following loss suggest that lower levels of preparedness are associated with higher levels of depressive symptoms among the bereaved. In addition, a 2013 study found that adults with higher levels of death denial experience significantly lower levels of self-esteem and existential well-being.
Where does this reluctance to talk about dying come from? Part of it can be attributed to improvements in health care and life expectancy over the past two centuries. In addition, the expansion of the funeral industry has almost fully removed the care, burial, and celebration of life from the purview of the family. These two developments have helped create a culture of denying death. Today, Western medical systems approach dying as something that can be postponed, with physicians generally being trained only to diagnose and treat illness. Even modules on palliative care largely focus on conveying facts and guidelines, rather than on addressing trainees’ personal feelings or helping to foster their comfort in providing such care.
How can we nudge society away from death denial and toward more open discussions about EOL? While ongoing education of the public and normalization of things like advance care planning, or documenting one’s wishes related to care in the setting of life-threatening illness, remain important, we believe that changes must come from within the health care system itself. There is a deep-seated discomfort with death even within the medical community, as evinced by the initial outcry surrounding the “Advance Care Planning Consultation” in the Affordable Health Care Choices Act of 2009, and the widespread suggestions that such a statute would lead to formation of “death panels” with the practice of euthanasia. To overcome this discomfort, we urge clinicians to examine their own beliefs and feelings related to death and discuss them with colleagues.
Of course, considering, discussing, and facing EOL is no small feat. It is challenging on both a professional and a personal level, and it continues to be so no matter how many times a physician does it. I, Dr. Sprinz, have spent 35 years caring for pediatric patients with cancer and blood disorders. I, Dr. MacDonell-Yilmaz, am at the start of a career in pediatric hematology/oncology and hospice and palliative medicine. Both of us have initiated and guided countless emotionally wrenching conversations with patients and families regarding approaching EOL. Both of us have provided care at the deathbeds of children and adolescents whose lives were tragically cut short by disease. Even with experience and repetition, these tasks never become easy. With time and practice however, they become more naturally integrated into patient care.
Our message to fellow clinicians is that facing discussions about death may be the hardest part of the profession. That it is so difficult, however, does not excuse us: we must all train to provide this critical aspect of medical care. The adage “get comfortable being uncomfortable” is perhaps the most critical piece of guidance we can offer to those navigating this aspect of medicine.
COVID-19 has proven that many of us, clinicians included, remain unprepared for death. And yet, access to palliative care is a human right. As physicians, we have a responsibility to guide patients, colleagues, and loved ones in finding the courage to discuss this emotional topic. This begins with modeling such courage ourselves. At least one constructive “new normal” may emerge if we take this difficult first step.
How do you handle discussions of death with your patients? Share your thoughts in the comments below!
Rebecca MacDonell-Yilmaz a hospice and palliative care physician and a pediatric hematologist/oncologist. She lives and works in Rhode Island. Her blog is www.thegrowthc.com and her Twitter is @beckymacyil.
Philippa Sprinz is a retired pediatric hematologist/oncologist and leader of the New England Pediatric Sickle Cell Consortium.
Note from the authors: Click here for a list of recommended resources on confronting death denial.
Illustration by April Brust