Mark Lazenby is an assistant professor at the Yale School of Nursing who recently co-authored, with Mei Bai YSN ’14, a review of studies that examines associations between spiritual well-being and quality of life in cancer patients. The study will be published in an upcoming issue of the Journal of Palliative Medicine. The News talked to Lazenby about the research that he and Bai looked at to understand whether spirituality has any effect on these patients’ experiences.
Q How do you measure spiritual well-being, and what is its relationship with quality of life?
A There is a scale that has been tested in different populations, particularly patients with cancer, that measures spiritual well-being. The scale is called the FACIT, which stands for Functional Assessment of Chronic Illness Therapy/Spiritual-Well-being. It’s a 12 item-scale that has three subscales, which we call factors. One factor measures Meaning, another measures Peace and another measures Faith. “I have a purpose in life” is a Meaning-type question [or statement that patients rate]. “I have peace of mind” is a Peace-type question, and “My illness has strengthened my faith” is a Faith-type question. Quality of life generally has four or five domains. The standard four are physical, functional, social/family and emotional well-being. Then the fifth would be spiritual well-being. Those facets have been developed over the last 30 years in many different studies to actually find out from patients what quality of life consists of for them.
Q Can you explain the trends found in the review?
A Primarily, Meaning and Peace [are associated] with other aspects of quality of life consistently across all of the studies, but Faith didn’t necessarily [associate with these aspects]. In some populations, Faith has associations, and in others, not.
Q Are these findings or trends seen amongst patients with other chronic diseases?
A I don’t know how widely it’s studied among patients with other chronic diseases. The important point here is that in the ’80s, the National Cancer Institute made quality of life an endpoint in cancer research, so there’s been a lot of quality of life research among cancer patients. Think of it as if we’re studying a drug, looking to see if it slows the progression of the cancer or actually improves overall survival. What was happening was people were studying a drug to see its effect on the tumor, but never were they studying the effect of the cancer or the treatment on people’s quality of life. One might imagine that you can slow the progression of the cancer but the sort of cost of quality of life from the treatment might be too great for a lot of people.
Q What might be the practical applications of finding these associations between quality of life and overall spiritual well-being?
A When we assess for patients’ quality of life, we’re very comfortable assessing for physical symptoms, and even their functional well-being — can they do things that they want to do, even their activities of daily living? We also ask about mood — are they sad or depressed or anxious? But very rarely do we assess in everyday practice whether or not they have peace of mind amid the cancer experience, or whether or not they’re finding meaning and purpose in life, and I think adding those to our standard symptom assessment would help patients who struggle with questions of meaning in life when they face cancer.
Q What is the next step in, or trajectory for research in terms of studying quality of life in cancer patients?
A The next step is really developing interventions that focus on improving patients’ senses of meaning and peace. There are some interventions that have been developed — for example, William Breitbart [Acting Chair of the Department of Psychiatry and Behavioral Sciences at the Memorial Sloan-Kettering Cancer Center] has developed an intervention called meaning-centered psychotherapy, and it is tailored for patients at the end of life, so they can find meaning even though they’re dying. I think we need to take those kinds of psychotherapies and bring them up much earlier into the cancer care continuum, to the time when people are diagnosed and are asking existential questions. It’s either adapting those types of interventions or developing interventions for the newly diagnosed patient. Spirituality is a topic that often health care providers are unsure about broaching with patients because it seems very private in our society. We’ve become quite comfortable at assessing patients’ sexual functions, especially when cancer treatment gets in the way of that, but it’s as if spirituality is even a little more private than sexual functions. We need to get over that fear, and ask patients whether or not they’re experiencing any spiritual distress. Many will say “no,” and many will say “it’s not your business,” but some may [say “yes”], and for those, we need to intervene and help improve their spiritual quality of life.