“The neglect of religion and spirituality as a key aspect of someone’s experience at the end of life results in a medical system that overly focuses on technology and aims for cure. This focus appears to lead to greater aggressive care, which has been shown to be associated with decreased patient quality of life near death and increased psychological issues among family members troubled by a medicalized death.”
When the spiritual needs of cancer patients are not well supported by the health care team the end-of-life (EOL) costs are higher. These findings are part of a study by Tracy Balboni, MD, MPH, an Assistant Professor in the Department of Radiation Oncology at Harvard Medical School and practicing radiation oncologist at Dana-Farber Cancer Institute and Brigham and Women’s Hospital. She also is the director of the Supportive and Palliative Radiation Oncology service that provides dedicated clinical care to patients with advanced cancers.
At Dana Farber, Dr. Balboni has been mentored by Holly Prigerson, Ph.D., an internationally-recognized palliative care researcher and director of the Center for Psychosocial Oncology and Palliative Care Research. Other research colleagues she credits for their collaboration include Michael Balboni, PhD, ThM, Andrea Phelps, MD, Alexi Wright, MD, John Peteet, MD, Chris Lathan, MD, and Tyler VanderWeele, PhD.
Dr. Balboni’s research examines how specific religious/spiritual beliefs and attitudes of advanced cancer patients influence quality of life in the anticipation of death and medical care received near the end of life. As part of the NIH-funded Coping with Cancer study, she is currently examining the elements of spiritual care from both the medical team and religious communities that impact patient well being and the intensity of medical care received at the end of life. This research will inform the development of spiritual care interventions aiming to improve patient well-being and to assist patients in avoiding futile, aggressive therapies near death.
The Rev. George Handzo, BCC, HealthCare Chaplaincy’s Vice President for Chaplaincy Care Leadership and Practice, first spoke with Dr. Balboni at last summer’s annual conference of the American Association of Hospice and Palliative Medicine in Vancouver. They established that HCC and her research group have much in common and agreed to follow up by phone about her study and its implications for the future of palliative care. Here are highlights of their conversation.
Handzo: The subject of spiritual needs and spiritual issues is not the normal course of research for radiation oncologists.
Balboni: Palliative care is at least 40 percent of what radiation oncologists do for symptomatic management of patients who have advanced cancers, so we’re frequently interacting with people who are near the end of life. Spirituality is a way that many patients cope with and find meaning within their illness. On the clinical side within radiation oncology, the importance of spirituality is not taught as part of the curriculum, but I imagine that it may be in the future with increasing focus on palliative care as part of a comprehensive approach to patients.Concerning my own personal career path, my initial interest was in caring for patients with advanced cancer. In the backdrop of that my husband, Michael, received his PhD in practical theology looking specifically at the intersection of spirituality in the practice of medicine. His interest area is on the side of practitioners, so that has been his focus, and I had these patient experiences. I couldn’t help but see the lack of real awareness of spirituality within my everyday practice. My training and clinical practice included very little interaction with chaplaincy--even knowing simply when to refer to a chaplain--let alone learning from chaplains about what issues to be looking out for or how do to things like a spiritual screening. It was actually during my internship year that my career came to a key turning point. I had a one month elective and--because of these interests--I asked if I could create my own elective of shadowing chaplaincy while doing a project examining the religion and health literature. It was an amazing experience to be immersed in chaplaincy. Seeing what chaplains do really opened my eyes to how important these issues are for patients. Then at the same time as I was reviewing the literature, I realized that there was a real need for a better understanding of the role of religion and spirituality within illness and of patients’ spiritual needs. That elective month with chaplaincy was the tipping point in my own realization that this is a very important area where a lot of research needs to be done. I also recognized that there needs to be better inroads created between chaplains, physicians, nurses, and religious communities. As I was going through my radiation oncology training I asked to make a research transition by focusing on spirituality and medicine--prior to that I was planning on being a translational researcher. I was fortunate enough to have a very supportive radiation oncology training program, and palliative care leaders as tremendous mentors, including Susan Block as a career mentor and Holly Prigerson as a research mentor.
Handzo: It’s interesting how the kind of chance encounters and the things we put ourselves in the way of make our story. It was not only your internship, but then you had mentors in Susan Block and Holly Prigerson who are among the leading researchers in palliative care.I have read what your group has done. Out of all that data, if you had to name the two or three salient findings, especially with regard to clinical practice, what would you say it was—the ones that made you say-- “Wow! This is important!”
Balboni: A few things immediately come to mind. First, it is remarkable how infrequently spiritual needs are addressed by the medical system. There is a sizable gap between what patients want and need in the realm of religion and spirituality and what the medical system offers to patients with advanced illness. Second is the finding within subsequent data showing that support of patients’ spiritual needs is associated with better quality of life, increased hospice use, and less intensive care at the end of life. Even after considering all the limitations in descriptive research and our current measurement tools, these associations are both remarkable and troubling. The neglect of religion and spirituality as a key aspect of someone’s experience at the end of life appears to lead to greater aggressive medical interventions which have been shown to be associated with decreased patient quality of life near death and increased psychological issues among family members troubled by a medicalized death. The real issue, at least as I see it, is that by neglecting a fundamental aspect of the illness experience, there is a cascading impact upon patient well-being, their medical decisions and hence costs. A key response to this neglect is that we need greater integration between the practice of chaplaincy and medical practice at the end of life. We also need nurses and physicians who are trained to be attuned to patients’ spirituality so that spiritual care becomes routinely addressed as part of patient care. This research suggests that this would provide a better balance to our approach to end-of-life care: one that is not solely guided by a technologically-driven mentality which tends to simply offer more technology, which is often futile and costly.
Handzo: It’s certainly costly - and, it depends on one’s definition of futile.
Balboni: Yes, it certainly does.
Handzo: Is two more days of aggressive treatment futile or not? Balboni: It’s always much clearer in retrospect, but not always so clear at the time. Our patients can help to guide us in this regard--for many an additional two days made possible by receiving aggressive medical care would be futile, but for others it would be essential to their preparation for death. Regardless, this preparation should be simultaneously addressed throughout the treatment plan.
Handzo: I know exactly what you’re talking about. In some cancer centers, there is a mentality among the treatment team which pushes to continue treatment on the assumption that another new drug will be along at any moment that could be helpful.
Balboni: Yes. This technological mentality has its benefits, but can also be problematic.
Handzo: One of the findings I can’t explain, and I’d love you to explain it to me, is that religious people disproportionally use aggressive care at the end of life. Is that right?
Balboni: Yes.
Handzo: What do you make of that?
Balboni: I only have some possible hypotheses as to why. One possibility is that religious people are holding onto miracles and equating continuing medical therapy with leaving things in God’s hands. Perhaps in many cases, that approach is most consistent with that person’s beliefs. But I think it can also be a misunderstanding--for some it might also be a realistic belief that God can heal with or without medical technology and that miraculous healing might not always mean healing in a physical form.
Other possibilities might be that these are patients who have spiritual needs that are not being addressed, and they’re not reaching that place of real peace to be able to let go.
Handzo: Yes, that makes sense. They’ve got to resolve the religious question, because that’s what’s important to them. And your data suggest that if they had someone to help them with those questions, it would be extremely helpful.
Balboni: Yes. In our research, we found that it is among these high religious coping patients that you see most of the benefits of spiritual care. When these patients’ spiritual needs are well-supported, they become markedly less likely to receive aggressive interventions at the end of life.
Handzo: So the challenge for us now is to discover what the active ingredient is in that spiritual care.
Balboni: Yes, that’s a big question.
Handzo: If only we could figure that out. Experts like Ken Pargament have been trying for years to figure out why some high religious copers decompensate, and some of them are resilient.
Balboni: There is a lack of information to indicate what that is. The current measures for spiritual care have been broad and not well-characterized. One thing that we did find--which was not surprising--is that patients reporting high support of their spiritual needs are also more likely to have received chaplaincy visits. But what actually happens within those chaplain encounters? What is the interaction between chaplaincy and the rest of the medical team? Clearly, even when and how someone gets referred to a chaplain is an interesting question.
Handzo: We do have answers to how that should happen. That’s what we do--strategic positioning. There are models and triggers, and that’s what we’ve been working on here is some protocols to hard wire that referral in. Part of it, as you can guess, is that a referral to palliative care should trigger a referral to chaplaincy.
Balboni: Palliative care teams really should be staffed with chaplains.
Handzo: Yes, The Joint Commission’s new standards have said that. So that’s an easy one: goals and care discussions that have the chaplain as an integral and required member of the interdisciplinary team. I think there’s more, for example when there's a conversation about DNR (do not resuscitate), or withdrawal of treatment, the family should at the very least have the opportunity to have a chaplain in the room. The next question is, given what we know, what you all found and what you know from others, what are the big questions still out there?
Balboni: We named one of them which is what are the key elements of spiritual care? We know chaplaincy is a key participant. What does the integrated medical team look like in providing spiritual care? And then ultimately the next step would be actually implementing a spiritual care intervention; putting that into practice and testing it in the setting of people who are facing advanced illness.
Handzo: So we need some pilot studies and somebody to try a few interventions--probably in oncology where the evidence is best for the work you and the others are doing.
Balboni: Yes. Within advanced cancer care I’m working with Holly Prigerson, who is the principal investigator of Coping with Cancer II--a multi-site, prospective cohort study of advanced cancer patients that examines communication between patients and physicians. The study also examines this question of why religious coping is associated with more aggressive medical care. It also attempts to better define the key elements of spiritual care by using a combination of qualitative and quantitative survey questions. We are hoping that this data will lead to hypothesis-generating conceptual models that can eventually be turned into a testable spiritual care intervention. The hope is that this research will help in providing some data to help fill in these missing pieces. Another major area of study that we have recently published focuses on patients’ spiritual needs and concerns. That’s a whole other area requiring further research in order to better characterize those needs and understand how they might relate to key spiritual and medical outcomes. Future spiritual care interventions need to be adapted to what patients’ needs are.
Handzo: It’s hard to know what the intervention should be if you don’t know what the diagnosis is.
Balboni: Yes, and its important to have flexibility so that spiritual care addresses the particular situation and needs of each patient. For example, Jennifer Temel’s study on patients with advanced lung cancer showed that palliative care improved issues including quality of life and depressive symptoms. The way the palliative care intervention was approached was to allow a degree of flexibility based on palliative care guidelines and on the expertise of the palliative care practitioners as they interfaced with each particular patient--though this is also a limitation of Dr. Temel’s very important study because it’s not clear what specific elements of palliative care resulted in these outcomes. Ideally, to be both flexible to the needs of patients and to identify what elements of spiritual care impact outcomes, there would be a defined, but flexible structure to the intervention and mixed qualitative-quantitative research methods would be used clearly to identify the key elements of spiritual care.
Handzo: What was remarkable to me was that despite the looseness, to put it one way, of the design, they still got a salient finding in that the patients who received aggressive care plus early palliative care lived longer than those who received aggressive care only. Less surprising was the finding that those who received palliative care had better quality of life and less depression. The point is, even if there was a chaplain, and as you said, we can’t isolate the salient variables anyway, so it wouldn’t have mattered.
Balboni: It may or may not have mattered. The study design does not allow us to definitively know.
Handzo: Yes, we couldn’t have been able to parse anything out. One last question: what advice might you give to chaplains to be effective members of the hospital community?
Balboni: I would think that most of the correction probably needs to be on the rest of medical team’s part. My vision would be that chaplains would play a key role in the training of medical practitioners in specialties that frequently care for patients facing advanced illness. Chaplaincy should be integrated into medical education, and we would all benefit from the inclusion of chaplaincy in multi-disciplinary teams, lectures, and case-based learning in order to better understand the role of chaplaincy and the provision of spiritual care. Better integration is needed in medical schools and continued throughout medical practice. We need chaplains to help do the educating about the intersection of illness, medical care, and spirituality. This is a needed correction that I hope we see in the years ahead.
Handzo: Tracy, thanks so much for the conversation.
KEY POINTS:
- Data show that support of patients’ spiritual needs is associated with better quality of life, increased hospice use, and less intensive care at the end of life.
- There is a sizable gap between what patients want and need in the realm of religion and spirituality and what the medical system offers to patients with advanced illness.
- The neglect of religion and spirituality as a key aspect of someone’s end of life experience appears to lead to greater aggressive medical interventions, which are shown to be associated with higher costs, decreased patient quality of life near death and increased psychological issues among family members.
- Greater integration is needed between the practice of chaplains and medical practice including chaplains being the expert trainers of physicians, nurses, and other members of the team so that spiritual issues are routinely addressed as part of the ongoing plan of care.
SIGNIFICANT CHALLENGES AND OPPORTUNITIES
- Identify and name what the active ingredients/key elements are in spiritual care, including professional chaplaincy’s unique contributions and
- Articulate and demonstrate what an integrated interdisciplinary team providing spiritual care would look like..
- Chaplains must engage in research, both independently and in collaboration with other disciplines in oncology or other settings where persons are facing advanced illness so that spiritual care interventions can be clearly identified, described, implemented, compared, and standardized.
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