Wednesday, March 14, 2012

Hoping for a Good Death: End of Life Care


"Jacob Blessing the Sons of Joseph" oil painting by Rembrandt

I attended a symposium last week titled, “Palliative Care: In Search of the Good Death” at Samford University’s Cumberland School of Law. The presenters included medical doctors and legal scholars who talked about end of life care within the context of modern healthcare systems and societal attitudes toward death. I attended the symposium as a healthcare provider thinking of physical needs of those facing death, but another reason I attended was a realization of the need for spiritual care in the final stages of life.

As a Catholic convert, one of the things I heard that was new to me was the request to pray for a holy death for one parishioner or another.  My first impression upon hearing that prayer request was to imagine how this petition might have been viewed in years past, knowing that this is a prayer dating back through the centuries. I thought of how many terrible ways one could die before the advent of modern medicine. What kind of pain would a cancer victim have endured 200 years ago? What about those with diabetes before the days of insulin who gradually became sicker and sicker until their bodies just shut down?  There were so many other unpleasant ways to die from injury, infection, pestilence and famine, with very few effective drugs to mediate the suffering.

As I thought further, within the context of the Roman Catholic Church, there was also a fear of judgment and punishment which only began to abate somewhat after the fresh air of Vatican II.  The hope was to be able to have a priest present at the time of death so that sins could be confessed, absolution given and the holy Eucharist received. It was only then that one could be assured of a happy repose free from the torment of judgment.  Consider the traditional petitions:

“From sudden and unexpected death, deliver us, O Lord.”

“May we be free from sin when we leave this world and rejoice in peace with You forever.”

                                  “ Remove far from me every kind of sin; obtain for me that my
                                   death may not come upon me unawares, but that I may have
                                   time to confess my sins sacramentally and to bewail them
                                   with a most perfect understanding and a most sincere and
                                   perfect contrition, in order that I may breathe forth my soul
                                   into the hands of Jesus and Mary. Amen”

Death could be a frightening thing in days gone by, as it still is today, though most of us try to push thoughts of death into some undetermined point in the future.  At the symposium on palliative care, we heard medical and legal experts discuss ethical issues surrounding end of life care, societal attitudes, and ramifications in healthcare/insurance coverage.

The "Good" Death?

Dr. Ryan Nash, Director of UAB's Palliative Care Leadership Center, began the symposium by presenting an overview of the hospice movement and the palliative care movement.  Referencing Rembrandt’s painting, “Jacob blessing the Sons of Joseph,” Dr. Nash said that the Old Testament narrative of Jacob’s death informed the hospice movement. In that narrative, one finds an acceptance of death, blessing, grief, good burial arrangements, and no mention of suffering. Modern medicine has sought to triumph over disease and death. The hospice and palliative care movements came as an answer to medicine’s triumphalistic denial of death. The goal of hospice at the outset was to return dying and death to the community, taking it away from the sterile medical environment. Palliative care has sought to bring some of the care measures of hospice back into the hospital.

With hospice and palliative care, we have acquiesced to the finitude of human life, but we are lacking in a unified ethic to offer blessing and hope.  The ancient prayer of the church had been to prevent sudden and unexpected death (having time to prepare), whereas the common wish today is to die quietly in one’s sleep.

Dr. Nash suggested that the way to move forward is by way of informed respect along with the acceptance of life’s finitude and medicine’s limitations. Informed respect takes into account the patient’s belief system as well as that of that of the healthcare provider.  Such attitudes would lead to a pluralistic palliative medicine.

Dr. H. Tristam Engelhardt, whose background is in medical ethics and philosophy, then proceeded to give a sweeping picture of the history of thought and philosophy in western civilization. Our problem today, he summarized, is that there is no one canonical secular morality that is agreed upon. Many issues have been de-moralized and deflated.  For instance, one may ask which society seems better when comparing cultures.  Values may be security, liberty, prosperity and health. These ideas could be agreed upon, but different cultures will rank these differently in importance.  Englehart made a good case that “The moral system constructed in the 13th century went belly-up in the 19th century.”  Our society today has deep and incompatible differences, most evident is the fact that people with theistic and atheistic world views live and work side by side.

Rationing, Death Panels, and Healthcare Reform

Jack Nelson, on faculty at the Cumberland School of Law, gave a presentation on healthcare in the U.S. and in the United Kingdom. He succinctly summed up our healthcare dilemma by stating that “Medicare is unsustainable,” and “rationing healthcare for the elderly is political hemlock.”

Kathy Cermina, a professor who teaches health-law-related courses at Nova Southeastern University, gave a presentation on end of life care.  She pointed out how hospice care provides an essential health benefit that is high-value and low cost.  Many do not enter into hospice care until they have only days to live. She effectively made a case for a system that would allow for concurrent care thus granting patients and families opportunity to receive the benefits of hospice earlier.

Enhancing Autonomy: Protecting Patients from Conflicted and Coercive Healthcare

Elizabeth Kvale is a board certified physician in Family Practice and Hospice and Palliative Medicine, currently doing research in palliative medicine at UAB.  She spoke of the importance of autonomy to physicians, the need for health literacy, and problems when there is a conflict of interests in decision-making and healthcare delivery. She stated that palliative care enables autonomy by prioritizing according to the patient’s values, clarifying options, increasing health literacy, and being oriented around the patient and family.

During discussion time one interesting concept that was mentioned was the millet system, whereby under the Ottoman Empire, the ethnic groups within the empire (Muslim, Jewish, and Christian) could each operate under their own legal system. In discussing how different groups within our current pluralistic society coalesce around the common values of their particular group, some comparison was made to the millet system under the old Ottoman rule.

Another vital point that was made in discussion was that one thing we can all do to help facilitate end of life care in a way that we would consider humane and in accordance with our beliefs and values is to have advanced directives. Most of us have an idea of what our wishes are concerning end of life care, but so few of us have actually taken the time to put those in a legal document.

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The symposium certainly provided important information on aspects of healthcare and end of life care. It also raised some important questions of how we can bring meaning to our living and dying in the modern world.  Here are some other sources online that you may find interesting:

Death and Budgets by David Brooks 

Thank God for Death, by Michael Dowd 

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