The video-recordings of the panel discussion “70 Years After Nuremberg: What Have We Learned?” are now available online on my Youtube channel.
The event took place on November 9, the anniversary of Kristallnacht, at the Museum of Jewish Heritage in New York City. There are three segments of the discussion that can be viewed. My personal comments about the lessons to be drawn in healthcare today focused on the issue of palliative and pain relief care at the end of life, and can be viewed in the recording entitled “Part 3”. For my contribution to the discussion I decided to share a painfully personal experience around the death of my mother and the inexcusable and unnecessary suffering she endured due to the lack of appropriate care at the end of life.
With the exception of those who suffer from terminal illness, we think of medical care primarily in terms of healing interventions. We don’t usually think about what kind of end of life care we would like to have for our loved ones and for ourselves. However, crisis might arise abruptly, especially with elderly individuals, as it did for my mother after she fell and broke her hip at age 93. My mother was hospitalized and passed away in a highly reputable hospital in Israel, a country that has good medical care. However, we should not assume that good end of life care is simply an extension of general good medical care. Last October’s Lancet Commission on the topic of palliative and pain relief care addressed the abyss in accessibility to such services in many low-income countries and pointed out, that even in high-income countries where good medical services exist, good palliative and pain relief care at the end of life are not necessarily available to all patients who need them. The report examined 20 health conditions which might require palliative and pain relief care and strongly recommended widening the scope of such services, which are currently offered to terminal cancer patients and patients suffering from a very limited number of other conditions.
The report pointed out that often there are passionate disagreements about the use of palliative care and pain relief at the end of life, which stem from “opiophobia,” misinformation and prejudice about the use of opioid medications to ease serious distress at end of life for fear of causing the patient’s death. The lack of training about the distinct difference between the management of serious distress at the end of life and euthanasia, or “mercy killing,” leaves physicians ill-prepared to deliver adequate care and worried about their own liability.
As a society, we must come to decisions and reach a transparent consensus about what kind of end of life care we demand. We mustn’t leave the ethical, moral and faith-based issues involved in end of life care to be interpreted by individual physicians according to their own personal perspective. The Lancet commission emphasized the need for creating interdisciplinary forums that will include faith-based leaders, law makers, physicians and other healthcare providers, as well as representatives of the public and of non-profit advocacy groups to have an open discussion and come to clearly stated conclusions about how to allow people to die with dignity and without unnecessary suffering.
The guidelines about palliative and pain relief care must outline clearly physicians’ roles, for example, delineating the responsibility of the pain management specialist vis a vis the other physicians involved in the care of a particular patient. Since not all physicians can be fully trained in palliative end of life care, the responsibility for such treatment must be placed in the hands of the specialists who are properly trained, so that physicians who are not experts in this particular aspect of medicine will not act out of ignorance, or fear for their licenses. The Lancet commission also strongly emphasized the need for creating structures for stewardship and monitoring of end of life care within hospitals as well as between institutions, to assure that the guidelines are being translated into practice.
The personal story I chose to share highlights the importance of the recommendation of the Lancet report, because everything that could have gone wrong did. As a society, we must work to create structures that protect first and foremost the patients, but also their family members, as well as their doctors, when all are brought face-to-face with the suffering that is sometimes part of the encounter with death.
Irit Felsen
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