Working in Palliative Care
"V":
I lost my Grandfather to cancer a few months ago and your TED talk made me ponder over the last few months of his life, during which he was bedridden. We gave him all the love and support we could, to lessen the burden of his struggle. This resonated with your notion of how people deserve to spend their last days on earth. During the time we were looking after him, a lot of people shared stories of the elderly being abandoned and not cared for by their families. Your talk made me empathize even more with them, as I imagined how these individuals have to spend the last few days/months/years of their lives going through physical as well as emotional discomfort.
I do not have a background in palliative care or medicine and am based in India. I would love to engage and contribute to the field of palliative care in any way I can. I have experience in the environmental social science sector. I was thinking of ways to integrate the aspects of palliative care and environmental social science, since, at this point of time, nature conservation and palliative care are two causes that are extremely close to my heart.
I was hoping to gain a few insights or ideas from you on how you think I could go ahead and pave a path that would help me engage in the field of palliative care and integrate the knowledge I have in the field of environmental social science, with it.
Response:
It’s easy to imagine your grandfather appreciating all that love, the greatest medicine. what a beautiful gift you gave each other.
i certainly agree with you. the world would be a better place if we acknowledged that we are all going to die. It’s hard to be at war with our own nature, and the fallout is immense. i’m very grateful for your activism on this front. you’ve already lived the point with your grandfather, and now i hear it’s time to point that love into the wider world.
there are myriad ways for you to exercise this wonderful impulse. in some ways, the most important may simply be in your character. you can continue to live the point and focus your activism in the way you move through the world. the way you treat yourself and those around you: compassion, curiosity, kindness, listening, un-shaming, bearing witness, seeing outside yourself (but don’t forget to include yourself!), you pick the words. palliative care is as much an attitude as it is a profession.
another way would be to pursue training in the relevant clinical disciplines and join the profession: medicine, nursing, social work and counseling, chaplaincy. there are others too: music thanatology, art therapy. you could also pursue training in physical or occupational or speech therapy; these professions are less directly involved with palliative care, but often enough you can extend the palliative care mode into these lines of work. indeed, for systemic change to happen (to social and health systems), we need to infuse all health professions with such sensitivity as you have found for yourself.
or you might consider volunteer work. i do not know the indian systems or landscape, but i bet there are ways to involve yourself in clinics and hospitals where you could exercise all that love as a volunteer. in many ways, this can be an especially gratifying path given how purely you get to care, less fettered by funding constraints or the politics of the professions.
beyond these general ideas, i wish i knew where to point you more specifically. there is one person who leaps to mind, Dr. MR Rajagopal. by all accounts Dr Raj is an amazing man doing big work. he founded the Pain and Palliative Care Society (PPCS) in the Medical College, Calicut, in 1993. you can learn more from this film: Hippocratic
i wish you all the best. this is not easy but beautiful work, and i’m very glad we share this mission.
-BJ Miller, MD
Jen:
I am currently in the middle of an online course which will culminate with a Specialization in Palliative Care, but I am not clinically trained as an MD or RN. How can someone with my skill set contribute best, as a committed career, to the Palliative Care community while not being a physician? Any thoughts you could give me around additional training, what kind of a careers are within the scope of what I have to offer or anything you feel I should be aware of or look into it would be extremely appreciated.
Response:
what you are describing and seeking points to the need for broad-based culture change, not simply healthcare reform. being interested in well-being beyond the cure; coordinating care across specialties and disciplines; empathy as bedrock; embracing dying well… this stuff is not the norm, and to make it the norm will require advocacy and activism, with one eye on the healthcare system and one eye outside.
It’s daunting, but it’s also wide open. you may just need to get creative.
one organizing question: do you want to pursue clinical training within the allied health professions? medicine, nursing, social work, chaplaincy - these are the big ones. but you can also bring a palliative mindset to other disciplines too: physical therapy, occupational therapy, speech-language pathology, nursing aide, home health aide, personal care attendant, discharge planning, care coordination and patient navigation. all of these disciplines have routes for training and credentialing, and your palliative training would be a very welcomed addition.
death doula is a wonderful quasi-profession all its own and on the rise. not quite part of healthcare per se (yet!), but not totally outsider it either. this would be a way for you to relatively quickly gain more training to be at the bedside with “patients" and families.
those are pathways where you could directly practice palliative care. there’s also the indirect route: you could bring your palliative sensitivities to ANY work, inside or outside of healthcare. since everyone suffers and everyone dies, the subject matter is inherently uber relevant. lots of good work could happen through human resource departments, for example, designing benefit packages that include adequate family leave or informal caregiver training (for employees who are also caring for someone sick or disabled outside of work, a shockingly common phenomenon).
there’s also health research; administrative work; philanthropy and foundation work; fundraising for existing palliative programs; art; writing.
or run for office! much of the change we're seeking will require legislation.
if you have an entrepreneurial streak, your ideas for wellness coordination and coaching sound wonderful! or seek employment with a company creating products or services that affect quality of life; the “longevity economy” is a real thing and getting real-er.
lastly, if no paid/professional avenues light up, let the training affect you in your person. let it change how you treat people. this is its own kind of activism. and of course, there’s always volunteer work to be done at hospice agencies or nursing homes or hospitals, ever needed and ever potent.
let us know how you play this out; no doubt, there are many of us who would love to learn from your example.
-BJ Miller, MD
Additional Resources
The MERI Center works to support patients facing serious illness, to train family and volunteer caregivers, to promote the competence and openness of professional health care teams, and to bring an openness to how our community sees death.
PALLIATIVE CARE
ALWAYS
Palliative Care Always is an online, case-based course for health care practitioners, patients and caregivers. We believe that incorporating the principles of palliative care into clinical practice can improve the quality of life for our patients and their support systems.
CAPC’s online training curriculum provides free continuing education credits for physicians, nurses, social workers, case managers, and licensed professional counselors at member organizations.
Teaching caregivers to use mindfulness-based tools to improve well-being, and through conversation, inspiring others to live fully in the face of the universal experience of loss.