END OF LIFE CARE/ PALLIATIVE CARE: Photographs from France, India, and the USA
ABOUT THE PROJECT
Important shifts are taking place in various places to put palliative care at the heart of public health programs. Much remains to be done to increase public awareness and to provide health care professionals with palliative care knowledge and training. I believe that documentary photography can be an important element of this teaching and training.
End of life care is a global issue. The palliative care approach is being adopted increasingly in industrialized nations where most deaths are in hospitals. Here death is “managed” rather than being treated as a natural part of the life experience. Many people are unaware that there is an alternative to the strictly biomedical, curative approach to terminal care. The palliative care approach is also being adopted in developing countries where many people die with insufficient pain management and insufficient social and financial support.
The photos in this series are from several places in France, India, and the USA. I began it by spending from Christmas Day 2005 until New Year’s Day 2006 at an extraordinary place: LA MAISON. It is a 24 bed palliative care home in Gardanne, France, created by a medical doctor and a social worker who had been dismayed at the treatment being delivered at the hospital where they were colleagues. They felt that much could be improved for all the patients they saw there, but particularly for the many AIDS patients who were often being treated in rude, disrespectful ways. Their initial offering was a 12 bed home in the woods near Marseille, which was featured in a fictional film. I visited the new place with a nurse from Nice and was completely impressed by the way they built a community which had as its mission to celebrate life to the last breath. Between Christmas and New Year’s I lived for the 8 days in one of the guest rooms for visiting family members, and spent the day with those patients who could leave their rooms or who invited me in to talk with them. Each evening I showed the day’s best images on my computer outside the dining room. It was an extraordinary experience for me.
At that time I was living in Nice, France, and I arranged to be an “Artist in Residence” in the newly created unit at a major hospital there. It was intended to be a 12 bed unit, but only 6 beds were available at the start. I spent two days a week there, often having nobody to photograph, but always learning a great deal from the staff and from the extraordinary group of people who came daily from two French associations of people who provide end of life “accompaniment” —- something I had never heard of but found extraordinarily rich.
Sometime later, after giving a lecture at the University of Lancaster’s program on end of life care, I learned about the Kerala, India program NNPC: Neighborhood Network for Palliative Care. It began with a doctor, a nurse and a social worker, who created a small inpatient unit at the hospital in Kerala, India. A few volunteers joined them, and professionals and volunteers from the surrounding area wanted to offer closer to home care. Three years later, the NNPC had 4000 volunteers who had raised funds and provided care in their areas. Overall in India it was estimated that about 3% of the population had access to palliative care; in Kerala 80% had such access! I spent 3 weeks visiting the inpatient unit, the outpatient unit and local area units, as well as riding with the teams that made home visits. It was a wonderful experience for me again.
The third body of photos in this project were taken in and around Houston, Texas. Here I accompanied a home visit team from Silverado Senior Living’s palliative care program. Some visits were to private homes and other visits were to care homes where someone had been placed on palliative care. In a second week I was “in residence” in the newly created 10 bed palliative care unit at MD Anderson Cancer Hospital. It was the ONLY such unit in the huge medical complex of Houston, and a very impressive one.
Collectively I hope these images will help people to think and talk more about how we die, how we would like to die, and how to make different options available to those approaching the end of their lives. Such demystification can be an important factor in decision-making about the services offered by medical and other people.
If END OF LIFE CARE is an area of particular interest to you, click here to download a slideshow from La Maison and click here to download the accompanying text from a lecture I gave about it in 2007. It remains the best palliative care home I have ever seen or heard about.