I really enjoyed facilitating a death cafe recently at a local hospital in conjunction with the Social Work Department. I learned a lot and it is best expressed by Dr. Daniel Hinshaw in this article on the ASCO blog (American Society of Clinical Oncologists. Lizzy Miles, the USA’s first Death Cafe host and our primary leader and speaker in the movement offers an excellent response and the following discourse is well worth the read. Dr. Hinshaw references several articles about doctor’s decisions to tell or not to tell the patient when they have an incurable disease.

Join us, August 16, 10 am to noon, at Crazy Wisdom Bookstore and Tearoom, 114 S. Main, Ann Arbor, facilitated by Diana Cramer. For more info about Death Cafe, visit www.DeathCafe.com. Lots more info on the blog there! We discuss things like this!

I’m spending an month in India and I’ve had some interesting conversation here about palliative care, facing death, family and community connections. I’m told very frequently that often the patient is not told about a terminal diagnosis. I have witnessed this first hand. It is seen as protecting the individual who is ill. Families are usually very close-knit and almost always children care for their parents at the end of life with much stoicism.

I think I would prefer honesty and the opportunity to have closure by facing the death together with my parent. However, who am I to say? It is a challenge to me to respect the wishes of the culture and the individual family. We each have our own path. Perhaps the style of communication throughout life is very different and full disclosure would not be tolerable in death, as it may not have been in any other area.

The field of palliative care is new to India, as it is to America, but the state of Kerala, near to Karnataka where I am located now, is in the forefront of development of palliative care services in low and middle income countries. From the Institute of Palliative Medicine (.org) website:

The state of Kerala has managed to develop an integrated health service delivery model with community participation in palliative care. Institute of Palliative Medicine has been playing a major role in shaping up this model. The evolving palliative care system in Kerala tries to address the problems of the incurably ill, bedridden and dying patients irrespective of the diagnosis, age or social class. The program in Kerala is also expanding to areas like community psychiatry and social rehabilitation of the chronically ill. Palliative care has been declared by Government of Kerala as part of primary health care. Combined efforts by Civil Society Organisations, Local Self Government and Government of Kerala have resulted in the best coverage anywhere in Low and Middle Countries for palliative care in Kerala. The ‘Quality of Death’ study by Economist Intelligence Unit (2010) states that “Amid the lamentably poor access to palliative care across India, the southern state of Kerala stands out as a beacon of hope. While India ranks at the bottom of the Index in overall score, and performs badly on many indicators, Kerala, if measured on the same points, would buck the trend. With only 3% of India’s population, the tiny state provides two-thirds of India’s palliative care services.

(Bold type added by me)

Palliative Care is defined by the Institute of Palliative Medicine in Kerala as “the active total care of patients with incurable diseases.” It does not require a six month prognosis like the current system of hospice care in the USA. I think maybe the US needs to take a step back in our development of end-of-life care services and re-look at hospice care and palliative care. Hospice care is a form of palliative care, but by making it a specialty first, with the six-month-prognosis requirement, we have done a disservice to the development of the broader concept of palliative care. I would rather see us develop programs that offer the “active total care of patients with incurable diseases” like the palliative care system being developed in India, without the focus being just on the last six months.

I recently interviewed Mary Lobo, the program manager for the Palliative Care Department at the Vivekananda Institute for Leadership Development arm of the Swami Vivekananda Youth Movement in Mysore, India, where I am currently assisting my husband in leading a music program of study for Univ. of Michigan students and alumni. They provide home-based, community-based care and carry a patient load of 85 with only five staff people (two nurses, two facilitators and a manager) and numerous volunteers, including doctors, psychologists, counselors and physiotherapists.

Mary also confirmed that it is very common not to tell the patient about their terminal diagnosis. We discussed the concept of advance care planning and the decision to choose only comfort care, not curative care. I’ve been seeing this as a black and white issue; either you accept death or you don’t. But being here has been a lesson to me. It’s not quite that simple. I’ve comforted myself by thinking that it was simply a choice that one made and then decided to live by. But there’s so much more that goes into it, especially family dynamics and how best to care for each other. Either way, providing home-based, total care is a good idea!

I’m looking forward to continuing to explore other cultures, which will inform me about my own culture and all of the forces that go into our decisions, especially our biggest ones, as we face the end of life.

Thanks for journeying with me.