What's Going On with Dying?

Sometimes the results of research are strange. 

Take this is one example: clergy at the bedside of dying patients resulted in less use of hospice care and greater use of aggressive and costly end-of-life medical procedures which resulted in a lowering their quality of life during their last days.

In a paper recently published by the Journal of the American Medical Association (JAMA), Dr Tracy Balboni and others reported that patients reporting high spiritual support from religious communities were less likely to receive hospice care, more likely to receive aggressive end of life measures, and more likely to die in an ICU in several hundred surveys in seven oncology centers in Boston, Dallas and New Haven compared to patients who were not highly supported from their religious communities! 

However, those patients who were not highly supported by their religious communities and, instead, tended to use chaplains and medical team personnel, had a higher quality of life in their final days.

What could possibly be going on here? 

After all, this would appear to me to be contrary to how we as clergy aid the dying (but then, I did a year's residency as a hospital chaplain as part of my preparation for ordination).

This research team surmised that the more dying patients received support from religious congregations, the more likely they were to fight death through experimental, highly toxic regimens of chemotherapy or surgeries with little chance of success. Apparently, these patients believed that God, acting through doctors, hospitals, and drugs, would miraculously save them.

Here’s the scary part – The data suggest “a lack of understanding on the part of religious communities about the medical realities that these patients are facing and that they focus instead on praying for miracles and perseverance through aggressive therapies.”

However, when patients received their spiritual support from hospital chaplains, they received forthright and realistic information bridging the facts of their medical situation with their end-of-life considerations and religious beliefs. But isn't that what all clergy should be doing? As I recall in my training, a chaplain is to elicit a patient’s values and goals, and, at the same time, weigh the potential benefits and risks of medical therapies. Trained hospital chaplains are to have one foot in each area – spiritual and medical. The goal, of course, is to help the patient have what we used to call a "good death."

So why aren’t clergy outside the hospital setting doing this? 

Balboni offered an explanation: “[a] fixation on the possibility of a miracle by both patients and their religious communities makes it difficult to change the focus of care;" that is, being able to shift away and deal with symptoms like pain, and to make end of life as comfortable as possible, and this means getting away from focusing solely on getting cured. She has actually heard from patients that stopping various therapies would be going against God's will. "One patient was concerned that stopping chemotherapy,” she related, “would be equivalent to committing suicide, which was against that person's religious beliefs."

Of course, it is not wrong for a terminally ill patient with advanced stage cancer to try experimental drugs, particularly if they are very young. But if it's at the expense the spiritual preparation people need at the end of life it may well be wrong; like keeping the focus away from the reality of the patient's true medical condition.

In their paper, Balboni and co-authors rhetorically ask why a belief in the potential for a miracle might result in more aggressive use of medical care? One possibility is that many religious people consider medicine to be a means of God's divine intervention. According to a survey in the Southeast, 80% of respondents endorsed such a belief -- that God acts through physicians to cure illness. 

But here's where this can go askew. Religious people may then view the withholding of heroic efforts as taking these technologies out of God's hand. Another view may be the tendency of some religious communities to elevate the role of suffering as "spiritual" or redeeming in itself.

So how is the problem fixed? As a starter, it is a strong endorsement for the continuing training of hospital chaplains through a method such as Clinical Pastoral Education (CPE). This specialized training helps clergy keep a foot in both worlds -- medical and spiritual. Along with this there is the need for medical practitioners to reach out more to religious communities and create a better understanding of end-of-life care, hospice, and what medicine can realistically offer. 

The point is this: spiritually-minded patients need to be convinced that choosing to withhold aggressive end-of-life measures does not constitute taking matters out of God’s hand.

And may we all strive in our own spiritual lives to have "a good death. " A death today which hospice-trained nurses and chaplains care can provide; that is, care designed to improve the quality of a patient's last days by providing comfort and ensuring the patient's dignity. It is delivered by a team of specially trained professionals (including chaplains), volunteers and family members. 

Hospice addresses all the symptoms of a disease, with a special emphasis on controlling a patient's pain and discomfort. It also addresses the emotional, social and spiritual impact of the disease on the patient and the patient's family and friends. During the patient's illness, and at the end, hospice offers a variety of bereavement and counseling services to families before and after a patient's death.