— “Poor cousin of palliative care” needs more resources, buy-in, and normalization
by Charles Bankhead, Senior Editor, MedPage Today April 4, 2024
A new sense of urgency has emerged for healthcare organizations to develop “sustainable and accessible bereavement care” and to cultivate a “bereavement-conscious” workforce to position bereavement as an “inherent element of the duty of care,” authors of a recent opinion piece asserted.
Inadequate investment in bereavement care has led to a paucity of integrated services at organizational, national, and global levels. Failure to recognize bereavement as a vital component of continuity of care can leave bereaved families without access to psychosocial support, putting them at risk of illness that exacerbates the substantial public health toll of interpersonal loss.
To develop a framework for compassionate communities requires shifting bereavement care from “an afterthought to a public health priority,” wrote Wendy G. Lichtenthal, PhD, of the University of Miami Sylvester Comprehensive Cancer Center, and co-authors in Lancet Public Health.
“We need an investment in the healthcare system and in the community to build up support and grief-literate, compassionate communities,” Lichtenthal told MedPage Today. “We need workplaces, schools, all institutions where people are, to be more informed and feel better about supporting grievers.”
The public health toll associated with grief has been well documented, she said. Recent events have accelerated the urgency for sustainable and accessible bereavement care — COVID-19, suicides, drug overdoses, homicides, armed conflicts, and terrorism.
Despite being integral to high-quality, family-centered healthcare, bereavement support often is poorly resourced, even described as the “poor cousin of palliative care.” In an ideal setting, bereavement care begins with pre-death grief education, continues through the dying process and end of life, and transitions into community-based support and psychosocial services, as needed.
Recent reports on death, palliative care, and pain relief have highlighted the need for better bereavement care delivery infrastructure, the authors noted in their introduction. Acknowledging that “bereavement has been overlooked,” the Lancet Commission on the Value of Death called for reorganizing priorities to address social determinants of death, dying, and grief. Imbalances in health and social care fostered by westernized medicine have “medicalized death and dying processes,” resulting in disenfranchisement of family and community involvement throughout illness and end of life, the authors continued.
Lichtenthal and colleagues proposed a transitional care model for bereavement, with Lichtenthal noting in a press release that their model “calls for health systems to shore up the quality and availability of their offerings, but also recognizes that resources for bereavement care within a given healthcare institution are finite.” The model comprises five essential “pillars”:
Preventive bereavement care
Ownership of bereavement care
Resource allocation for bereavement care
“Upskilling” support providers with bereavement education and training
Evidence-based care
As the model suggests, bereavement can, and often does, begin well before end of life and death.
“Grief often starts at the time of diagnosis because in that moment, the reality of the possibility of death enters consciousness,” said Lichtenthal. “Now, someone’s kind of doing this dance, whether it’s the patient, as they think about the possibility of dying, or those who care about that patient. They begin this kind of dance with that possibility and maintaining hope.”
“The dynamic of that changes as they get more news. Maybe there are signs within the patient, such as deterioration in their physical health, and that brings a wave of grief. Grief comes in waves, it is not a static state,” she added.
Grief did in fact begin early for Fumiko Chino, MD, of Memorial Sloan Kettering Cancer Center in New York City. Still in her 20s, she and her then-fiancé learned that he had an aggressive neuroendocrine cancer. The two of them had a frustrating, circuitous medical experience, as several physicians did not take his symptoms seriously, given his young age. By the time the diagnosis was made, the cancer had metastasized.
The young married couple endured an emotionally and physically painful journey to end of life, which was compounded by a mountain of debt. The term “financial toxicity” had just begun to appear in the medical literature.
“When my husband was sick, we had friends and family members helping take care of Andrew,” said Chino, an expert with the American Society of Clinical Oncology. “Some of that actually involved taking care of me. At one point I was getting fairly burned out from taking care of him, and my family and his said, ‘You need to take a trip, leave here for a couple of days. We’ll take care of Andrew.'”
The life-altering experience of a death journey affected many aspects of her life. Before her husband’s diagnosis, Chino had been pursuing a degree in studio photography and digital imaging. Afterward, she felt called to medicine and eventually enrolled at Duke University in Durham, North Carolina, and obtained a medical degree. She subsequently followed her mother, brother, and sister into the specialty of radiation oncology.
During medical school, Chino attended a lecture that introduced her to the term “financial toxicity.” She has since researched and published extensively on the topic. Her publications include an essay about the salutary effects of adopting a rescue cat which Chino initially opposed.
A decade since her husband’s death, Chino continues to grieve. In that time, she has come to realize that many people are uncomfortable with grief. She has a hard time understanding why normalization of grief is so difficult for many people.
“It’s insane that we are so uncomfortable with death and grief that we can’t speak about it freely and come to acceptance that this is a process that is both unique and universal,” said Chino.
Charles Bankhead is senior editor for oncology and also covers urology, dermatology, and ophthalmology. He joined MedPage Today in 2007.
