The amount of spiritual support received by terminally ill patients has a direct impact on the aggressiveness of their end-of-life care. But not in the way you're probably thinking.
Might God, or rather those who purport to represent the Lord's guidance, be blocking efforts to bend the nation's healthcare cost curve by pushing futile costly care on the terminally ill?
A study this week from the Dana Farber Cancer Institute prompts this provocative, admittedly incendiary question.
These may sound like fighting words to those of many faiths. Yet it's what I found myself asking after reading a paper by Dana Farber's, Tracy Balboni, MD, published this week in JAMA Internal Medicine.
Balboni, a palliative care specialist and core researcher for the institute's Center for Psychooncology and Palliative Care Research, surveyed several hundred patients with advanced cancer who received care at seven oncology centers in Boston, Dallas, and New Haven.
Her team asked these terminal patients to rank how much spiritual support they received from their pastors, priests, rabbis, or other members of their religious communities, compared with how much support they got from their medical team or hospital chaplain.
After the patients died, the researchers returned to their medical records to examine the aggressiveness of their end-of-life care.
"What we found is that patients who said they received a high amount of support from those religious communities were less likely to receive hospice care, more likely to receive aggressive medical interventions such as care in the intensive care unit, resuscitation, mechanical ventilation, and were more likely to die in an ICU setting, compared with patients who were not highly supported by their religious communities," Balboni says.
Those more heavily influenced by religious groups were less likely to have a high quality of life in their final days, she says.
A Belief in Miracles
The more they received support from religious congregations, the more likely patients 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, Balboni surmises.
"What the data suggests is that there is a lack of understanding on the part of these 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."
On the other hand, 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.
"The chaplain elicits the patients' values and goals, and how they want to spend their remaining time, and gets them to consider weighing the potential benefits and risks of particular therapy," Balboni explains. "The chaplains have one foot in each realm."
In her practice at Dana Farber, Balboni says she's seen many times when "this fixation on the possibility of a miracle by both patients and their religious communities makes it difficult to change the focus of care" to deal with symptoms like pain, and to make end of life as comfortable as possible, and away from getting cured.
Medicine as Divine Intervention
"It's like they're saying, 'God is a God of miracles. We'll pray for you that you will be healed of this illness.' And there might be concerns whether choosing not to undergo certain therapies is potentially violating the sanctity of life, and that somehow continuing these therapies is choosing life, as opposed to the assumption—and I've actually heard this from patients—that it would be going against God's will to stop therapies.
"One patient was concerned that stopping chemotherapy would be equivalent to committing suicide, which was against that person's religious beliefs."
Balboni emphasizes that it's not categorically wrong for a terminally ill patient with advanced stage cancer to try experimental drugs, particularly if they are very young. "Often it's very appropriate to choose medical technologies and interventions with the hope of providing better quality of life and better survival," she says.
But if it's at the expense of embracing the kind of spiritual preparation that people need to prepare for at the end of life, well, that's probably not what the patient would want if they could appreciate the gravity of their situation.
In their paper, Balboni and co-authors rhetorically ask why this belief in the potential for "miraculous healing" might result in "more aggressive medical care, when one might rather conclude that it should motivate a belief in divine miracles that do not require medical technologies?
"One possibility is that religious people consider medicine to be a primary means of divine intervention," according to a telephone survey in the Southeast, 80% of whose respondents "endorsed a belief that God acts through physicians to cure illness. Hence, religious congregations may view choosing to withhold medical technologies as curtailing the principal avenue by which divine healing can take place or even taking the trajectory of the person's life out of 'God's hands.' "
Additionally, religious communities, she says, may emphasize "hope found through suffering," which may compel patients to fight their diseases.
Costs Not Quantified
Balboni's paper did not quantify the cost of care for these patients during their last months of life, a defect in the report and a topic in an ongoing research project, she says. But it's a safe bet that aggressive care is much more expensive than a palliative or hospice approach.
So how do we fix the problem? For starters, Balboni says that more funding for hospital chaplaincy programs might be a good start. But medical teams need to reach out to religious communities to improve communication and education.
"I think there needs to be better collaboration and communication between those providing medical care of patients and religious communities, about end-of-life care, palliative care, and hospice, and what certain technologies can offer, and help them understand what their congregants are facing when they're dealing with a terminal illness," she says.
"It's hard for them to appreciate when and if death will occur. So if they're unsure, they of course want to pray for the miracle and the hope for the benefits of the medical technology."
Researching the literature, I see that this is not the first study of its kind. In 2009, Balboni and colleagues drew similar conclusions in a JAMA paper about how terminally ill cancer patients use religion to justify futile end-of-life care. In fact, there are numerous studies drawing similar conclusions.
The authors point out that their findings "emphasize the need for clinician spiritual care training, particularly given their frequent lack of training and its association with increased spiritual care provision."
Eventually, they may be able to convince their spiritually-minded patients that "choosing to withhold aggressive end-of-life measures does not constitute taking matters out of 'God's hands."