Redwing Keyssar who recently spoke at AHWGO set out early in her life to assist people in this transformation. Throughout these years she has kept a journal. Those stories and reflections are now part of her insightful book “Last Act of Kindness”. She continues to be a midwife to the dying and is currently the director of Palliative Care and End-of-Life Care at Jewish Family and Children Services in San Francisco. How much is death part of our life and how much do we know about this most amazing, most final event we all have to go through? As much as birth is part of our everyday life so is death. We prepare for birth, we seldom prepare for death. What a comforting thought to have an advocate, a midwife in dying.
Palliative Care is about relieving suffering physically and emotionally. This is not necessarily connected to end-of-life care but often is, when care is not about curing but giving comfort. As always in our society labels develop because of the way insurances and regulatory agencies define a state and draw the line. Hospice care requires a physician to state that if a disease progresses in an expected pattern, the patient likely has six months or less to live. It is covered by Medicare. Palliative care does not fit such definition and is not covered by Medicare. If given a different label such as Symptom Management Service (UCSF)or Advance Ilness Management Program (AIM at Sutter Health) coverage is available. Hospice care normally means that a hospice nurse visits once or twice a week, seldom do they attend the death of a person (there are exceptions such as the Hospice of Petaluma). Hospice care at home only works if the person has a community who can participate in the care giving. If care at home is not possible there are a few amazing models of residential hospice care such as the Zen Hospice Project in San Francisco, which I had the privilege to work on as an architect. Such residential hospices which offer a beautiful, emphatic, caring environments and a dedicated staff of professionals and volunteers offer great opportunities for partnership with bigger institutions that cannot give this level of care.
As the discussion about how we age accelerates so will also the discussion about how we die. It could be an enormous relief to bring this subject out in the open, to discuss it, to witness it and thus to practice it. Just spending an evening with Redwing and talking about it has influenced my approach. It seems much more normal to me now to think about is as part of life and not consider it as a taboo topic. It seems a luxury to be able to reflect upon it. It is not about a script for our death since none of us knows how we will pass. It is rather about being able to talk about. Being able to die in a society which normalizes death rather than considering it as a failure already seems progress. We live in a society that wants to ‘fix’ things, looks, illness, aging, dying. When we cannot fix anymore, it means giving up for many. Hospice referrals mean giving up for many. People get referred too late into hospice. The average stay in a hospice in the US is 21 days. Thirty percent of hospice patients die in less than 7 days. If referred earlier suffering might have been spared, room for practice might have been there.
In our discussion we talked about the funeral industry and the fact that people get ‘cleaned away’ quickly after their death. Who has still witnessed a wake in the sanctity of the home? Just as there are choices in giving birth at home or in the hospital, there should be choices in death if so desired. What is crucial in all these choices is knowledge and training.
What has to happen to provide those choices? Will Kaiser start offering courses in preparation for dying? Baby Boomers will bring about change also in this area. Living in an intensely capitalistic culture new professions will emerge, ‘death coaches’ maybe (they are already popping up) – what is needed though for everyman is training, an advocate and alternatives to dying in a hospital such as support at home or support for residential hospice care. To make this work we have to push for redefining insurance coverage to meet people’s actual needs.