When the National Consensus Project for Quality Palliative Care released the third edition of its Clinical Practice Guidelines for Quality Palliative Care in 2013, Dr. Betty Ferrell who co-led the project said that any hospital that is not including all eight domains of the Guidelines is not doing palliative care. Note that the word “good” is missing here intentionally. Her meaning is that what you are doing should not be called palliative care if you do not include all eight domains- one of which covers spiritual, religious and existential concerns. The Guidelines call specifically for the inclusion of a "spiritual care professional" on the team. The Joint Commission's Standards for Advanced Certification for Palliative Care includes a chaplain as one of the four required members of the palliative care team.
However, a study just published in Health Affairs reports that using the Joint Commission staffing standards "only 25 percent of participating programs met that standard based on funded positions, and even when unfunded positions were included, only 39 percent of programs met the standard." [i] The study points out that many programs do not have a physician assigned and rely on an advance practice nurse.
Another related issue is burnout among palliative care staff which Dr. Tony Back and colleagues have pointed out in their recent article appears to be higher among palliative care staff than among other medical disciplines.[ii] Part of the stress, of course, is from understaffing. This stressor can cause turnover, poor team functioning and, of course, substandard care.
In any case, this issue is important to chaplains because the part of palliative care that I see most often understaffed and underrepresented is spiritual care/chaplaincy. Many hospitals say they do palliative care which implies they take care of the spiritual dimension when, in fact, they do not or they do so only minimally. They have access to a chaplain but they do not have a chaplain integrated into the team, and certainly do not support a chaplain out of the palliative care budget.
So what to do?
1. We as chaplains should be supporting all efforts to increase palliative care staffing in all disciplines, and all efforts to increase training sites for palliative care physicians and nurses as championed by the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Care Nurses Association. More well educated palliative care doctors and nurses means more doctors and nurses who understand the role of spiritual care in palliative care- and better care for patients generally.
2. We need to be active in helping develop measures of quality for spiritual care in palliative care. Currently, as I've written elsewhere, the National Quality Forum (NQF) has only one approved measure in spiritual care and that covers only hospice care, not the rest of palliative care. The NQF does not develop measures. It only evaluates measures submitted to it. Since chaplains are the spiritual care leads on the team, it is up to us to lead in developing more measures to demonstrate the importance and power of spiritual care in health care.
3. We need to be constant and aggressive in advocating for more palliative care staff in our institutions. This includes understanding the research that supports palliative care in general and spiritual care in particular.
The literature supporting the effect of palliative care on satisfaction, QOL and use of health care resources is robust and growing. All models supporting it also support the inclusion of spiritual care. However, as this study demonstrates, just having a study or a guideline does not make something happen. It happens when people who believe in palliative care take this evidence and use it to advocate for better care.
[i] Spetz, J., Dudley, N., Trupin, L., Rogers, M., Meier, D. E., & Dumanovsky, T. (2016). Few Hospital Palliative Care Programs Meet National Staffing Recommendations. Health Affairs, 35(9), 1690-1697.
[ii] Back, A., Steinhauser, K., Kamal, A., & Jackson, V., (2016). Building Resilience for Palliative Care Clinicians: An Approach to Burnout Prevention Based on Individual Skills and Workplace Factors. J of Pain & Symptom Management, 52(2), 284-291.