By Dave DeFusco
In recent years, health and medical professionals have increasingly devoted their efforts to support people nearing the end of life, with a focus on palliative care. This specialized field of medicine emphasizes comfort and quality of life for those with terminal illnesses. Yet, while palliative care has flourished, the phenomenon of death itself has been less frequently explored through the lens of occupational therapy鈥攁 field fundamentally rooted in human engagement and the activities that give life meaning. This oversight has left a significant gap in both practice and the academic literature, one that Melanie Evangelista, a clinical assistant professor in the Katz School鈥檚 Occupational Therapy Doctorate, is working hard to address.
Occupational therapy (OT) is defined by its focus on enabling people to participate in the occupations, or activities, that they need, want or are expected to do. These occupations range from basic self-care tasks to more complex roles that contribute to one鈥檚 identity and sense of purpose. However, death and dying presents a challenge for OTs: Is dying itself an occupation? And if it is, how should it be approached within the framework of OT?
While there is some debate over whether dying is an occupation, it is obviously a significant phenomenon鈥攐ne that encompasses a wide array of factors, including culture, religion, age, disease and individual circumstances. As a profession dedicated to cultural competence and improving quality of life, occupational therapy has a unique role to play in supporting individuals as they face death and dying. For Evangelista, the intersection of her profession with end-of-life care is deeply personal. Evangelista, who is pursuing a Ph.D. in gerontology and leadership, said that her experiences working in a nursing home during the COVID-19 pandemic shaped her research interests.
鈥淚 watched 100 people die in a week, people whom I鈥檝e known for years,鈥 she said.
This experience led Evangelista to reflect on the gaps in care for dying individuals, particularly those in subacute rehabilitation facilities who were not receiving hospice care. Despite their imminent death, these patients were not given the same quality of therapy as others.
鈥淎s I鈥檝e progressed through my Ph.D., I realized that this is an overlooked population that鈥檚 hard to study because of privacy rules,鈥 she said. 鈥淭here鈥檚 this huge gap among occupational therapists in how to treat people at the of end of their lives.鈥
Her research is informed by studies showing that when OTs are involved in hospice care, they improve their patients鈥 quality of life, as well as life expectancy, through occupational engagement. In addition, their involvement can have a profound impact on reducing depression and anxiety among the loved ones of dying patients.
But what does occupational engagement look like for someone who is dying? Evangelista said it鈥檚 more than executing physical tasks鈥攊t鈥檚 about helping individuals find meaning and purpose in their final days. For some, this might mean cooking a meal for their family despite dementia鈥檚 toll on memory. For others, it might involve staying connected with loved ones through technology or engaging in a beloved hobby like knitting, even when chemotherapy treatment results in neuropathy.
Whether through small acts of kindness, such as someone putting on a favorite sweater, or structured interventions, like facilitating spiritual practices, OTs have the potential to significantly enhance the quality of life for those who are dying. However, for this potential to be fully realized, the OT field must continue to expand its focus on end-of-life care.
At the Katz School, this shift is already underway. Evangelista teaches a course on Occupational Performance in the Older Adult Population, where students create advance directives and learn how to have difficult conversations with families about how to support patients at the end of life.
鈥淏y embracing the complexity and significance of death as both an occupation and a phenomenon, OTs can offer unparalleled support to individuals and families during one of life鈥檚 most challenging times,鈥 said Evangelista. 鈥淭he conversations that I鈥檓 participating in now are just the beginning of a broader movement to ensure that everyone, regardless of age or diagnosis, has the opportunity to live fully until the very end.鈥
