Engage in Other Ways

POLICY

  • Lobby your congressperson about health issues important to you. Eg, Family & Medical Leave overhaul; advance the Care Corps Act. 

  • Run for office on a platform of person-centered healthcare reform, or health + justice

  • Policy makers: know what’s happening on the ground and root out barriers to care; integrate qualitative and social-science methodologies; revisit the Flexner Report and how medical education is structured and funded.

EDUCATION

Medicine, nursing, social work, chaplains, aides, therapists, counselors – the healthcare workforce. And, K-12 and secondary education teachers as well.

  • Teachers: Teach about loss and grief, about interconnectedness, nature, and the relationship between giving and receiving care, and the relationship between self and other.

  • HR professional: add a “fundamentals of caregiving” benefit packages; explore ways to promote a reasonable and kind medical leave policy and ways to gift days off to colleagues in need.

INFRASTRUCTURE

Builders and designers, create with eye toward function AND form; help us feel safe to fall apart; help us get to what’s possible. Anything designed can take frailty and vulnerability into account.

  • Bricks & mortar: hospitals, clinics, and community centers 

  • Communications tools

  • Durable-medical and adaptive equipment.  Orthopedic shoes can be beautiful!

SOCIAL

Media, informal communities, language, art, song, faith: if these are your fortes, there is a ton of work to be done. We can all help by rewarding each other for paying attention to a fuller reaity, one that includes loss and suffering and death.

  • Discern between pity and empathy in your personal life and when interacting with others.

  • Your attitude; how you treat others and yourself; where you give your time; don't paint over your own limitations or vulnerabilities.

Looking for More?

I get a lot of notes from people looking for ways to get involved with palliative care to hospice. For the clinical work, there are the allied health professions - medicine, nursing, social work, chaplaincy, physical or occupational or speech therapy, counseling and psychotherapy, direct-care work (eg, home health aide, nursing assistant, personal care attendant). There is volunteerism.  There is healthcare administration and research and education. For folks outside of healthcare, there are also ways to participate indirectly by bringing these principles to your existing work, since this is a spirit of care as well as a profession.

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. It also made me realize that if I were to die, I'd love to die happily and at peace, in an environment where I feel loved and cared for. I believe that all of us deserve to die that way. The world would be a better place if we acknowledged that we are all going to die and worked towards ensuring a peaceful death, for those around.

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

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 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.

  • BJ Miller

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