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
Rumour has it that the Filmfare awards ceremony will happen in the same city on the same day.
What are the drugs in question? Are they illegal drugs in the market which are not available for medical use, like heroin? Or are they pain medications? If the latter, are they prescribed opioids (legally prescribed and diverted)? Or are they illegally accessed prescription opioids – meaning, drugs which are among those prescribed by doctors but which are also available illegally?
The recent data from Center for Disease Control and Prevention of the United States of America sheds light on this.
Most importantly, it is a mix. A prescription opioid, Fentanyl, and an illegal drug (in USA), heroin, are among the most common.
The following is a list of medicines that cause the most deaths. Note that Gabapentin is one of them.
The award is in recognition of his work in developing a model to deliver and extend equitable healthcare and other critical resources to the world’s most vulnerable populations. Project ECHO is currently operating in 40+ countries with the help of 300+ academic partners.
Here on the other side of the globe, we at Pallium India are very grateful to ECHO international for the all the progress that we have made in the educational sector by using the ECHO platform. Our heartiest congratulations to Dr Sanjeev Arora and his team.
It was a great honor for me to deliver the Dr Ketayun Dinshaw oration at Tata Memorial Hospital on 19th October, 2019. Not only because of the great person – Dr Dinshaw – in whose name the oration was. Not only because of the superlative words that Dr Jayita Deodhar used in her introduction. And not only for the critical mass – the elite audience. But also because of the two people who took the chair.
One was Dr Lucito D’Souza, the onco-surgeon who brought palliative care to India first. In 1986 he opened the first modern hospice in India, the Shanti Avedna Sadan. Another one in Goa and a third one in Delhi followed. The palliative care scene in India today stands on the shoulders of this great visionary.
The other was Ms Devika Bhojwani, a humanitarian who started the Women’s Cancer Initiative with Dr Dinshaw a decade and a half back. The relevance of this initiative can only be understood if one remembers the poor access and inequity of health care as a whole in India, which would tell us how much vulnerable people suffer. Women are discriminated against in the country, having less access to healthcare anyway and not infrequently abandoned when they are ill. This exceptional initiative, I hope, will pave the way for all of us to make sure that the care that we give and the services that we develop are equitable. And that the most vulnerable and the most needy are not abandoned.
Thank you Dr. Santosh Menon, Dr Jaya Ghosh and Dr Lavanya for giving me this opportunity.
By the way, if you want to go a bit deeper into the history of this beginning of palliative care in India, you can read Dr D’Souza’s article in “Today’s clinician” published from Goa on 12 October 2019. The publication also carries articles by Anne Mattam, D Nevisa, B. Schmidt and D.A.N.Mascarenhas, Vidya Viswanath, A.S.Chagla, P.P.D’Souza and T.Narayan.