Why Does Palliative Care Matter?
As of late, I’ve been spending most of my time asking the individuals around the Pallium India office the same question I’ve been asking individuals all around the world: Why does palliative care matter?
As a 2019 Thomas J. Watson Fellow, I am funded to conduct one year of non-academic, individual research outside of the United States. Watson projects are supposed to reflect the fellow’s deepest passion, and the year to give time to challenge, reinvent, and reimagine that passion’s possibilities. My project seeks to explore how care is provided to individuals with life-limiting and life-threatening illnesses, an endeavor which informed by my interest in palliative care and desire to investigate (without necessarily taking any stances on) the assumptions that unpin the discipline.
Put another way, I’m spending the year focusing on the big question such as ‘What is palliative care?’ and ‘Why does it matter?’
The staff’s responses were highlighted in Facebook and Instagram series ‘Humans of Pallium India.’ From personal anecdotes about a family member’s experience with palliative care to detailing the importance of educational and vocational support programs to Pallium patients, the answers revealed not just the range of personal experiences the staff have with palliative care, but the sheer breadth of services Pallium India provides to its patients.
Even though programs like vocational rehabilitation were not what I used to think of when I envisioned palliative care, after spending nearly a month at Pallium, answers of that nature no longer surprise me.
The World Health Organization defines palliative care as, “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Certainly, physical pain falls under the umbrella of ‘problem associated with life-threatening illness,’ but what about, for example, the emotional suffering resulting from the financial stress an illness may put onto a family? Is that also a problem associated with illness?
Perhaps the question should be posed differently: For an individual who recently became paraplegic, are all of the newfound difficulties she faces navigating everyday tasks considered suffering related to her health status? What about the very real possibility of a child’s tuition fees going unpaid after illness prevents a parent from earning?
Maybe addressing these questions first requires to define what falls under the domain of ‘problem associated with life-threatening illness.’ However, regardless of how it is defined, I believe it is near impossible to ignore the downstream impacts of life-threatening illness—the children, families, and futures that it can mercilessly take with it.
When I reflect on the questions that inspired this journey, my answers are now less certain. The formal definition of palliative care may be useful when thinking theoretically, but the actuality of palliative care differs depending on the needs of the individual and capacities of the organization providing care. Palliative care is symptom management, pain relief, and psychosocial support; it is also helping individuals navigate life after a diagnosis and supporting families in various aspect of that adjustment process.
What palliative care is depends on what the individual needs, and it is precisely because palliative care can depend that it matters so much.
Before being named a 2019 Thomas J. Watson Fellow, Sophia worked in the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Institute and as a hospice volunteer while completing her undergraduate education at Wellesley College. Sophia can be found on Twitter @SophiaZupanc. She is chronicling her travels at www.peripateticpalliation.com