Spiritual Support at the End of Life

This is part 2 in our series on spirituality and aging. Read part 1 here.

Eric Markinson identified himself as a chaplain when he walked into the hospital room of a man he calls Tommy, who was dying of alcohol-related liver disease.

“I don’t think you can help me much,” Tommy said. “I’m an atheist.”

Markinson, associate pastor of spiritual care at Grace United Methodist Church in Dallas, replied that he was there to help in any way that he could. In the conversation that followed, Tommy said he’d rejected the religion of his childhood, which taught that God was judgmental and unforgiving. Now he feared the judgment of his girlfriend and children over the years of alcohol abuse that had led to his impending death.  

Even though he was an atheist, Tommy was in spiritual distress.

“At the end of life, people can struggle just as much with spiritual pain and guilt as they do with physical pain,” Markinson said.

Increasingly, medical and hospice professionals are recognizing the reality of this spiritual suffering, and they are focusing on ways to integrate spiritual support into the care provided at the end of life.

A chronic or life-threatening illness can trigger spiritual struggles even for patients who are not religious.

“Patients who are challenged by illness are likely to need assistance to find strength, hope, meaning, comfort and healing,” said Ann M. Callahan, author of Spirituality and Hospice Social Work (2017) and associate professor in the social work program at Eastern Kentucky University. “Health care providers may not be able to prevent spiritual suffering, but they can support spiritual well-being.”

When Congress created the Medicare Hospice Benefit in the 1980s, it included reimbursement for spiritual care. Hospitals and physicians now routinely ask patients about their religious and spiritual preferences as part of the intake process. Medical schools teach courses in spirituality as it relates to patient care. And chaplains are trained to offer spiritual care not only to those in their own traditions but also to people of a variety of religions, as well as those who are atheist, agnostic or “spiritual but not religious.”

“We are trained to meet people where they are and to be a nonanxious, supportive presence,” Markinson said.

All of this emerges from a growing body of research suggesting that religious or spiritual ties can promote healing and improve patient outcomes. Studies show that many patients want their physicians to discuss their spiritual beliefs; among those at the end of life, 70 percent would want their physicians to know their beliefs, and 50 percent would like their doctors to pray with them. Studies also demonstrate that most hospitalized patients believe spiritual health is as important as physical health and that many rely on faith and prayer to cope.

Spiritual Distress

The diagnosis of a chronic or life-threatening illness can trigger spiritual struggles for patients, whether or not they are religious.  

“One is inevitably led to ask, ‘What is my life all about? Am I ready to die? Is there something I am still missing in this life?’” said Ruben L. F. Habito, professor of world religions and spirituality at Southern Methodist University’s Perkins School of Theology. “With such questions may come some kind of fear, anxiety, a sense of regret, a sense of longing. These thoughts and sentiments arise from the core of one’s very being, that realm that can be called ‘spiritual.’”

Some patients experience spiritual distress or spiritual suffering—an inability to connect with what gives their lives meaning—and some medical professionals say this diagnosis can cause just as much suffering as physical pain. In one small study, 96 percent of patients with advanced-stage cancer said they experienced spiritual pain.  

With help, that pain can often be alleviated. Working as a team, medical professionals, chaplains and social workers can help address the spiritual suffering of those facing the end of life.

“Patients can transcend spiritual suffering by finding meaning and making sense out of their experience,” Callahan said. “This might require the help of a spiritual care provider and the services of other professionals, volunteers, family members and friends.”

In a nation that’s increasingly diverse, offering spiritual help can be tricky.

Help might come in the form of prayer, scripture, rituals (such as anointing or last rites) or spiritual counseling, or even assistance in helping a patient, when appropriate, to reconcile with an estranged friend or loved one. Markinson was able to help Tommy initiate a conversation with his loved ones, who forgave him. That provided some closure and helped assuage some of the spiritual pain compounding his physical suffering.

But offering spiritual help can be a tricky proposition, given the increasingly diverse spiritual landscape in the United States, as well as the fact that more people are identifying as spiritual but not religious.

Over the past 30 years, training for chaplains in theology schools has evolved to prepare them to serve patients of different faiths and spiritual practices—either directly, or by connecting them to resources related to their personal beliefs. Chaplain programs give students a basic understanding of all the world’s major religions. Student chaplains also learn to let patients take the lead in their spiritual care.

“Before, chaplains might have gone in as spiritual guides and talked to patients,” said Jeanne Stevenson-Moessner, professor of pastoral care at Southern Methodist University’s Perkins School of Theology. “Now, we’re learning to first listen and then converse. It’s a real shift.”

Instead of offering a few pat words of wisdom, which might ring hollow, chaplains are taught to first listen to the patient’s words, pay attention to nonverbal clues and then tailor their care accordingly, Stevenson-Moessner said. This patient-led approach helps ensure that the chaplain’s guidance is truly relevant to the patient’s particular spiritual struggles, as well as appropriate for that patient’s beliefs.   

For example, if a patient talks about regrets or expresses a desire for forgiveness—whether from God or a higher power—the chaplain can offer reassuring insights. That might come in the form of a Bible passage or traditional prayer for a Christian, or a passage from Rumi or the Tao for someone who identifies as spiritual but not religious.

Spiritual Turmoil

While spiritual beliefs may offer comfort, they can also provoke turmoil.

Some patients with regrets may worry that God is punishing them with a life-threatening disease, for example. Others, whose spirituality emphasizes the connection of mind, body and spirit, may view a diagnosis of life-threatening illness as a sign of failure, said Laura Howe-Martin, a psychologist and assistant director of behavioral sciences at UT Southwestern Medical Center’s cancer institute in Dallas (TX).

Some patients feel enormous pressure to maintain a positive attitude, based on a belief that it will affect their disease. Caring professionals call it the “tyranny of the positive attitude,” according to Howe-Martin.

“We know that the mind and body are incredibly related,” she said. “But some interpret the research to mean, ‘If you think this way, it increases your risk of cancer’ or ‘If you have a good attitude, you’ll live longer.’ We just don’t have any data to back that up.”

A key part of the chaplain’s role is to alleviate any unhealthy emotions, whether they originate in rigid religious beliefs or open-ended New Age spirituality, said Michael Washington, palliative care chaplain at Baylor Scott & White Medical Center in Dallas.  

Resolving spiritual distress can help patients make better end-of-life decisions, such as when to discontinue treatment if it’s not likely to prolong life significantly. Sometimes his counsel helps patients find their voices when they no longer wish to continue treatment and their families aren’t supportive.

Good spiritual care can also make bereavement easier for those left behind.  

“After patients pass, the bereaved can have a lot of untoward health effects,” said Reeni Abraham, an internal medicine physician who advises a course on medicine and spirituality at UT Southwestern Medical School. “Having a death that’s the least distressing is not only important compassionately for the patient but also for their support system.”

Spirituality also offers an avenue for a deeper relationship between patients and their physicians, Abraham added. If she notices a Bible or a devotional at a patient’s bedside, she might inquire: “How are you doing? I see that you’re reading the Bible. Do you want to tell me more about that?”

In situations like this, physicians must tread carefully, always following the patient’s lead and never proselytizing. But when the patient expresses an interest, and the physician feels comfortable, shared prayers or spiritual conversations are healing to some.

“We hope this kind of spiritual support provides for increased comfort and better relationships with patients’ health care teams,” Abraham said. “The goal is to advance health, and health is a conglomerate of many things. It’s a holistic approach to a patient.”

Spiritual Assessments

Most hospitals and many doctors now take a spiritual history or spiritual assessment as part of the patient intake process. Spiritual assessments provide yet another way to understand and support patients in their experience of health and illness, according to Abraham.

“It’s important to treat patients holistically,” Abraham said. “I firmly believe that really helps us to advance care. That’s beneficial for physicians as they build relationships with their patients, and as they walk beside their patients during all the milestones in life that they’ll see together.”

The spiritual assessment also helps identify beliefs or faith affiliations that could affect a person’s treatment plan—such as a Jehovah’s Witness, who might refuse a blood transfusion for religious reasons.

One of the most popular models is the FICA Spiritual History tool, which asks patients questions about faith and belief (“Do you have spiritual beliefs that help you cope with stress?”), importance (“Have your beliefs influenced how you take care of yourself in this illness?”), community (“Are you part of a spiritual or religious community?”) and address in care (“How would you like me to address these issues in your health care?”)

“The goal is to find out what is important to the patient,” said Marita Grundzen, associate director emerita of Stanford Geriatric Education Center at Stanford School of Medicine. “Some might say, ‘I’d like my pastor to visit,’ or ‘I’d like to have communion.’ Another might say, ‘I’d like access to the outdoors. I can better heal with a nature scene outside of my window.’”

Spiritual Sensitivity

Sally Mandler and her husband, Gene Beasley, both consider themselves spiritual but not religious; Beasley used to joke that he was a “born-again pedestrian.” After Beasley had a stroke last March—on top of pre-existing Alzheimer’s disease—Mandler enlisted the help of an in-home health agency, which sent caregivers to assist with bathing, dressing and other needs. Many were young men from Ghana with a strong Christian faith and, in one case, a lack of sensitivity to those with different beliefs. One man insisted on praying “in Jesus’ name” over Beasley at bedtime.

Even with his compromised cognition, Mandler saw the distress in Beasley’s eyes, and asked the caregiver to leave.

Professional caregivers do usually try to avoid offering spiritual input that may be viewed as intrusive or inappropriate. Yet when the patient identifies as spiritual but not religious, the definition of what is appropriate may be unclear.

Open-ended questions can help tease out what’s important to patients and to find ways to support them appropriately, Washington said.

“I ask, ‘What will be meaningful to you at this time?’” he said. “The answer is whatever the patient tells you.”

If the patient asks, Washington might offer a prayer to a Higher Power, rather than God or Jesus. Or he might help a patient reflect on legacy and what he or she hopes to leave behind. Sometimes it may mean helping the patient to find closure by forgiving a family member or by asking for forgiveness. Sometimes it’s simply a promise by the chaplain to be there at the end.

“I am meeting the needs they have and respecting their spirituality,” he said. “It’s not about my faith background. It’s about the patients and what is meaningful to them and to their families.”

Sometimes, sensitive spiritual care may even mean keeping religion or faith out of the equation entirely.  

“If I ask, ‘What gives your life meaning?’ and the patient says, ‘Fishing,’ then my response is, ‘Great. Let’s talk about fishing,’” Abraham said.  

Stevenson-Moessner notes this trend toward treating mind, body and spirit together is part of ancient medical tradition. In indigenous cultures, religious leader are also healers; Hippocrates noted in 460 BC that the spiritual and the physical were intertwined.

“It’s nothing new,” she said. “It’s just that we’ve reclaimed it.”