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Charles von Gunten, M.D., Ph.D. is a provost at The Institute for Palliative Medicine at San Diego Hospice.
As a physician, I believe that our knowledge about relieving the suffering associated with serious illness has never been more powerful in the 2500 years of recorded medical history than it is now — but it isn’t a standard for health care.
Yet, the relief of suffering is a topic for all ages, as evidenced in a song I came across on YouTube — “DNR” by Nickelback. The first verse speaks to this:
I’m through with lying in bed here in the ICU
I’m on a respirator and I have a feeding tube
This life isn’t ending up the way I want it to be.
Hospice care was the first place where new approaches to relieving suffering and improving quality of life have been developed over the last 50 years. Locally, San Diego Hospice and The Institute of Palliative Medicine is recognized as a leader in the relief of suffering and is helping to promote and teach new knowledge in the field of palliative medicine. Physicians from around the world participate in the largest training program in the United States for physicians specializing in this new field. They go on to be consultants in the nation’s hospitals and hospices.
Just like other improvements developed first in the terminally ill, those discoveries don’t apply ONLY to the terminally ill. Consequently, the development of palliative care programs in hospitals and clinics throughout the country and around the world has followed. Palliative care is a way to make all that new knowledge available to people before they are dying — when they have months and years to reap the benefits — even if they are cured!
Does it matter? As a healthcare consumer, yes, it does matter. About half of all hospitals have some aspect of a palliative care consultation service. More people are getting better attention to their symptoms and the other components of suffering.
The key to better access to palliative care is consumer demand. In contrast to the revolution in birthing that happened when women demanded that their needs be better met, there is little demand for improvement in the relief of suffering that accompanies serious illness. Consequently, there is little pressure to accelerate the pace of change.
You can make a difference. Speak up about the suffering associated with your illness. Expect that your physician will either address the pain and suffering that you and your family experience, or expect that the doctor will be able to ask for a consultation within your health system to provide the expertise.