Dr. Steinhauser's primary interests are palliative care, spirituality and health, and resiliency. She is a Professor in the Department of Population Health Sciences, Associate Professor in the Department of Medicine, a Senior Fellow at the Center for the Study of Aging and Human Development, and member of the Duke Cancer Center. She is a Health Scientist at the Durham VA , Health Services Research and Development Center of Innovation.
How did you become interested in spirituality and palliative care and how can it be integrated into conversations to make end of life easier for the patient and caregiver?
Early in my career, we conducted a qualitative and quantitative study to understand the components of quality of life at end of life. We surveyed patients, family members, physicians, nurses, social workers, chaplains, and hospice volunteers— those who have been by the bedside. At one point in the survey, respondents were asked to rank order 9 pre-selected items of what was most important to them; including items such as dying at home, being mentally aware, and being at peace and free of pain. We found that for patients and families, ‘being free from pain’ and ‘being at peace’ were statistically indistinguishable and on equal footing. Clinicians ranked them as distinct, with pain being most important. As a sociologist, with an interest in the whole person, that specific finding, and the results overall, reaffirmed that taking care of the patient/caregiver’s spirit should be given as much weight as physical care, that emotional care should be included in decision making, and that patients/caregivers are appreciative when clinicians demonstrate concern for them beyond their illness diagnosis.
We know too that providers do not receive training in how to discuss spiritual needs and how to integrate “spiritual care” into physical care discussions. The questions are very different from a typical scientific model. Several years ago we explored what language to use when asking about a person’s spiritual well-being. We found that a neutral question such as, “To what extent are you at peace?” was a helpful way to enter those conversations that allow patients to respond in whatever framework is meaningful to them. Our research showed that responses to that phrase correlates with both emotional and spiritual well-being. Another colleague of mine asks, “How are your spirits holding up?” which also resonates with many patients and their caregivers. We are currently conducting a study to develop a more in-depth spiritual assessment tool to provide patient-centered information to the care team. Physicians typically do not ask such questions because of lack of training, so this area is fruitful for investigation.
Through your research, what are some of the reasons you found that the medical profession doesn’t integrate early palliative care?
We know from a number of landmark studies, that when you integrate palliative with cure-directed therapies, early in the serious illness trajectory, people live longer and have a greater quality of life. However, there are still communication challenges that impede early integration of care.
For example, there is still confusion on what is palliative care vs. hospice care—many equate them. But palliative care serves as an extra layer of support, focusing on reducing symptom burden, assisting with communication and decision-making, and addressing emotional care needs alongside other therapies. Hospice is a particular care offered under a Medicare benefit when patients are thought to have fewer than six months to live. Because of the confusion, and a variety of other factors, palliative care is often consulted later in the illness trajectory than could optimally benefit patients and their families. So there is definitely a need to educate clinicians, as well as patients and their caregivers, to know when to ask for palliative care and what to expect when they receive it. Surveys show that when palliative care is described to patients and families and they learn about the particular care elements available, they endorse it as a desired extra layer of support to reduce suffering and illness burden and improve quality of life.
With an increased demand for palliative care due to an aging population, what do you think will be the biggest challenge in delivering it and how do you think we can overcome it?
With people living longer, especially with chronic illnesses, one of the major challenges will be a shortage of palliative care specialists to meet the population’s palliative care needs. As a result, we need to take a broader, population health approach and think about how to train clinicians to deliver generalist palliative care in a variety of settings and across diseases. This could be physicians who practice in oncology or nephrology or primary care. There are new large scale projects nationally, as well as efforts here at Duke, to pursue this approach.
This provides opportunities to develop collaborations between Population Health Sciences and Palliative Care. Dr. David Casarett, Chief of Palliative Care at Duke University Department of Medicine, describes these kinds of synergies in the article Why Population Health and Palliative Care Need Each Other. He states that both disciplines focus on quality of life, upstream care, patient-centered outcomes, and shared-decision making. Population health approaches in palliative care can change the culture of serious illness, in part, by equipping many in the clinic, at the bedside, and throughout the health system with the skills that facilitate challenging and thoughtful conversations that reflect patient preferences and shared decision-making. And, an integrated population health approach offers chances for clinicians, clinical educators and research scientists—at stages ranging from intervention testing and evaluation through implementation science—to develop solutions together.