Nothing could dull the woman's pain. Every time the medical team asked her to rate it on a scale of 1 to 10, "she would uncontrollably sob," remembers Dr. Sheri Kittelson, medical director for the University of Florida Health Palliative Care Program.
Not only heart-wrenching for the clinicians to experience, the patient's pain complicated her treatment since moving, bathing, feeding and otherwise caring for her proved excruciating. "We couldn't meet her need," says Kittelson of the 30-something mother who was hospitalized with a terminal illness.
But that began to turn around when representatives from the hospital's Arts in Medicine program helped the patient – who turned out to be a talented artist – launch a project painting birdhouses, which she gifted to her young daughter. Since her physical pain had been intensified by the emotional pain of knowing she'd leave the little girl motherless, the project helped alleviate it so much that she required fewer medications from there on out.
"You can give morphine or whatever, but for some patients, there is no amount of medicine that will control their pain – it's existential, spiritual, emotional; it comes from other things," Kittelson says.
Indeed, research shows that spirituality – which can be defined as anything that gives people's lives meaning, be it faith, family, nature, art or even sports – is a patient need that affects health care decision-making. When spirituality is tended to, it can improve patient outcomes including quality of life and can reduce the cost of care. When spirituality is neglected, on the other hand, patient suffering can intensify.
"The bottom line findings are [that] patient spirituality is very commonly a critical aspect of the patient's experience of a serious illness and a key aspect of their quality of life in the positive direction, but also patients can experience spiritual needs and those needs can result in poorer quality of life," says Dr. Tracy Balboni, the clinical director of the supportive and palliative radiation oncology service at Dana-Farber/Brigham and Women's Cancer Center in Boston.
People's pain can be particularly severe if their belief systems don't align with what's happening to them or a loved one, finds the Rev. Ronald Oliver of Norton Healthcare in Louisville, Kentucky, and treasurer of the Association of Professional Chaplains. "People have experienced the death of a child and they're trying to figure out, 'Why did this happen?'" he says. "If their worldview doesn't give them some direction, their grief gets stuck."
Health care institutions are catching on to the benefits of incorporating spirituality into medical care. In 2009, for instance, a group of leaders in the field developed research-backed guidelines for better implementing spiritual care in palliative care practice. The guidelines recommend, for instance, that providers use evidence-based spiritual screening tools that prompt them to ask questions like "Are spirituality or religion important in your life?" to help them determine who might benefit from a more in-depth assessment. The guidelines also encourage spiritual providers to document spiritual needs in patients' records, which teams can then use to inform their treatment plans.
The guidelines have since been used by many hospitals and major organizations including the National Academy of Medicine and the American Society of Clinical Oncology, says Dr. Christina Puchalski, director of the George Washington Institute for Spirituality and Health. "Those guidelines [recognize] that spiritual care is an essential element of good care in general and an absolutely essential element of palliative care," she says.
For patients, that means their spiritual and religious beliefs may be tended to in health care settings in ways relatively unheard of just a few decades ago. Younger clinicians, for example, are more likely to be trained in attentive listening, mindfulness and other techniques that can help them be more compassionate toward patients, says Puchalski, who's also a professor in the George Washington University School of Medicine and Health Sciences and in the Milken Institute School of Public Health.
"When you see a tear and you see that there's something else going on, I generally stop the questioning and you're there to really be present and love that patient," she says. "That sense of connection is incredibly important in the sense of that patient feeling, 'I think I may be able to get through this.'"
Patients also shouldn't be surprised to find chaplains working alongside doctors, nurses and other health care professionals. "Sometimes people are nervous to ask for a chaplain" because in TV shows, chaplains appear in dire situations, Oliver says. "But that's not the case. The bulk of the work that chaplains do is helping people make sense of the events that are happening to them and try to put it in some frame of meaning." They can also support the health care team by helping them figure out why a patient won't comply with treatment or make what seems like an obvious health care decision, Oliver says.
One young man Balboni of the Dana-Farber Cancer Institute cared for, for example, continued to request aggressive treatment for metastatic cancer even though it was ineffective and keeping him in the hospital, away from his family. But after discussing his spirituality with a nurse practitioner, the team learned his decisions were based on his belief that he must choose medical interventions to uphold the sanctity of life. Subsequent discussions with a priest helped the patient reframe his faith in a way that allowed him to honor his and his family's wishes and God.
"If [the team] did not recognize the importance of his faith in his struggle with his illness and if that conversation hadn't been had, it would have been a very different trajectory for him,," Balboni says.
Until all hospitals have such well-executed spiritual care, however, patients need to be prepared to discuss their spirituality or values with their health care team – even if they aren't facing terminal illnesses, aren't offered a visit from a chaplain or aren't asked about their beliefs during a hospital stay, experts say.
"If you're feeling that people are rushed and you're a number, advocate for yourself because the doctors and nurses want to provide good care," Puchalski says. Eventually, she hopes, patients won't have to bring up their spirituality; it will be just as common for clinicians to ask them to rate their spiritual distress as it is for them to ask about their physical pain. "Are we there yet in our hospital systems? No," Puchalski says. "Are we getting there? I think so."