How to address spirituality issues at the end of life
From the June ACP Observer, copyright © 2003 by the American College of Physicians.
By Bonnie Darves
SAN DIEGO—When it comes to patient care, physicians tend to focus exclusively on diagnosis and cure. While that model works much of the time, it often comes up short when patients are dying.
During an Annual Session workshop, Christina M. Puchalski, FACP, director of the George Washington University Institute for Spirituality and Health, said that physicians have a hard time switching gears to provide the kind of care patients need at the end of life. She noted that spiritual issues can loom large for dying patients, and that physicians need to take into account patients' religious and cultural beliefs and concerns in how they provide care.
Too often, Dr. Puchalski said, physicians are so uncomfortable with the prospect of discussing those issues that they distance themselves from patients. This can leave patients feeling like their care has stopped altogether. A recent survey by the American Board of Internal Medicine found that 85% of residents were "very uncomfortable" discussing end-of-life issues with patients.
"I think we can all relate to that," she said. "It's hard to go into a dying patient's room, break bad news, then sit with the patient and deal with that discomfort and sadness."
Physicians have substantially improved pain management in dying patients, she noted, but they still tend to "give less attention to the other dimensions of suffering: the psychosocial, existential and spiritual."
"The problem is that we still view dying as a purely medical problem, with a focus on cure alone," she continued. "Many physicians and others think that if they cannot fix or cure a patient, there is not much more they can do. That is not true. It's important to look at the whole dimension of dying, not just the physical aspects."
She described one physician colleague who was diagnosed with terminal pancreatic cancer. Her friends tried to be helpful, but they failed to talk about the one thing the woman really wanted to discuss: dying.
"When it came to talking about what was actually going on," Dr. Puchalski said, "her friends' most common response was, 'Well, let's keep this conversation positive.' "
To provide the support patients need at the end of their lives, physicians should start by doing some things that come hard to most: listen, and refrain from making judgments and avoiding issues patients want to discuss. "End-of-life care is not about getting an advanced directive," Dr. Puchalski said. "It's about listening to the patient."
Recognizing the myriad issues the patient is facing, however, is a good starting point for providing compassionate end-of-life care. Many patients want to know why this is happening to them, for example, or they may express anger at the diagnosis of terminal illness. Others might be concerned about how their families will fare after they're gone, or they may be experiencing shame or guilt. For some patients, what becomes most important in their final days is knowing that they will be remembered.
Finally, it's not uncommon for patients who have been religious all their lives to seriously question their relationship with God or an entity they have worshipped. That in itself can be devastating for a patient, Dr. Puchalski said. She added that hopelessness and despair are common feelings among dying patients, and that it's important for physicians to acknowledge those feelings.
So how can physicians deal more effectively with spiritual issues in end-of-life care? Dr. Puchalski recommended taking a "spiritual history" to assess the issues and concerns that might influence both medical decision-making and a patient's ability to cope.
She suggested using the following questions when taking a patient's history:
Do you have spiritual beliefs that have helped you cope with difficult times in the past?
Are these beliefs important to you, and how do they influence the way you care for yourself?
Are you involved in a spiritual or religious community?
How would you like your health care provider to help you address spiritual issues and concerns?
Dr. Puchalski also recommended taking a multidisciplinary approach to spiritual issues that involves chaplains, physicians, social workers, nurses and other professionals. The goal, Dr. Puchalski said, is to clarify patients' concerns and beliefs, and to try to help patients identify goals for care and reach clinical decisions. While one patient's goal might be minimizing pain, for example, another might want to avoid invasive interventions or to simply die at home comfortably.
Physicians can also mobilize sources of support, Dr. Puchalski said, by asking patients if they need help and who might be able to provide the support they need. Many patients also benefit from having physicians help them develop "wish lists" or "dream lists" of things they want to do before they die.
Finally, she addressed approaches physicians should avoid in caring for dying patients. She urged physicians to relinquish the urge to treat and instead work with patients as partners. "It's important that we refrain from trying to solve patients' problems and resolve their unanswered questions," she added.
Bonnie Darves is a freelance writer in Lake Oswego, Ore.
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