By Ellen Williams-Masson
She opened her eyes and nodded when I spoke her name, her skin tissue-soft as I clasped her hand to pray. Adeline (not her real name) was an 87-year-old resident of the long-term care facility who had suffered a third major stroke 15 days before. She no longer had control of the right side of her body and was terminally ill and close to death. Adeline’s advance directive clearly spelled out her wishes should such an event occur: no feeding tubes, no IVs, and no extraordinary measures to keep her alive. Her grown children agreed, so Adeline was placed on “comfort care” and given only those medications and treatments needed to keep her comfortable and out of pain. Our staff provided compassionate care and her family gathered around her bedside. Adeline peacefully passed away 20 days after the final stroke.
However, as a new chaplain, I struggled with Adeline’s lack of hydration and nutrition, even though I knew it was what the patient and family wanted. Was she dying from the effects of the stroke, or from starvation and dehydration? Was an extended fast within our ethics as a Catholic organization? After all, didn’t Jesus call us to feed the hungry and care for the needs of others? On the other hand, Adeline could neither eat nor drink naturally; she couldn’t swallow. She had clearly stated in writing she did not want IVs or feeding tubes, and a loss of appetite is a natural part of the dying process. Our staff provided the best of care, and Adeline had a peaceful natural death surrounded by her family. Would I really want to change that outcome?
Moral distress like I was feeling is inherent in healthcare and occurs when professionals cannot do what they believe to be right due to forces outside their control. Although most prevalent in nursing, moral distress can be felt by any staff member and occurs when personal integrity and values clash with course of action, and the conflict cannot be readily resolved (reviewed in Guthrie, 2014). Studies have shown that moral distress correlates with low job satisfaction, attrition, burnout, poor collaboration between physicians and nurses, lack of ethical support and climate, low psychological empowerment, and low autonomy (reviewed in Lamiani et al, 2015).
Many studies on moral distress have focused on hospital settings, but long-term care is also rife with opportunities for distress. According to research, understaffed nursing homes employing underpaid staff often struggle to balance quality care with the bottom line. Staff form relationships with the residents and advocate for their care, squeezed between limited resources and the needs of multiple residents. Residents of long-term facilities are an increasingly vulnerable population who may have difficulty speaking up for themselves. Lack of managerial and administrative support, when coupled with a lack of nurse-physician collaboration, also distresses nurses who may feel powerless when their professional integrity is challenged (Pijl-Zieber et al, 2008). There is also moral distress for administrators and physicians because of decisions they have made, no matter how reluctantly.
Many nursing homes have taken steps to address these concerns; for example, the facility where I minister fosters an atmosphere of open communication, and residents receive compassionate and loving care. Even in the best of circumstances, however, moral distress may arise in nursing homes among family members and spread to staff. A classic example is “the son or daughter from the coast” who flies in and disrupts family harmony over care for a loved one. The local family members have witnessed the slow and gradual decline in Grandpa’s health and are prepared for his imminent death, but the relative coming from a distance is shocked at Grandpa’s wan appearance and wants a battery of tests “just in case.” This creates moral distress for the family, which now has internal conflict; the staff, who were settled on a care plan; the physician, who feels pressured to begin more aggressive and unnecessary treatment; and even the patient, who gets caught in the middle and in consequence may have a less than peaceful death.
The typically longer length of stay in long-term care facilities allows relationships to develop among staff, family, and residents that might not have time to ripen in hospital settings. These relationships are key to how a chaplain can intervene and alleviate moral distress. Long-term care chaplains can serve as a buffer between arguing family members and advocate as needed for residents, family, staff, and administrators. Chaplains can educate facility employees about mitigating moral distress and guide them in exploring their values and personal ethical beliefs. They also serve as a confidential safety valve when emotions run high. Caring for employees can reduce “moral residue,” the reactive distress that accumulates following moral distress-causing events (Epstein and Hamric, 2009).
Long-term care facilities, which use less aggressive treatments than hospitals, may cause less moral distress from medical futility. Caring for patients with little chance of recovery is emotionally taxing for nursing staff, but the burden is relieved if patients are allowed to die a “good” death without excessive medical intervention.
Such was the case with Adeline, the stroke patient mentioned above, whose IV was disconnected and aggressive medications stopped. Although I knew everyone involved only wanted what was best, and kindest, for Adeline, I remained conflicted about the manner of her death. Alleviating my personal moral distress involved talking to medical staff and ultimately taking the case to our Medical Ethics Committee, where the case was discussed in detail.
Promoting an ethical workplace allows chaplains to foster a healthier environment for everyone, as does creating a safe place for staff to process their experiences and give voice to the distress they are feeling. Administrators can help by creating structures that allow these conversations to occur. Administrators and leaders across the healthcare spectrum have an obligation to address moral distress, which is increasingly recognized as a major cause of nursing staff burnout and attrition.
Ultimately, moral distress is a symptom of an empathetic, caring staff. For the Adelines of the world, that may be just what Jesus ordered.
Ellen Williams-Masson is a staff chaplain at St. Clare Hospital in Baraboo, Wisconsin.
Epstein, E., & Hamric, A. (2009). Moral Distress, Moral Residue and the Crescendo Effect. Journal of Clinical Ethics, 20 (4), 330-342.
Guthrie, M. (2014). A Health Care Chaplain’s Pastoral Response to Moral Distress. Journal of Health Care Chaplaincy, 20 (1), 3-15.
Lamiani, G., Borghi, L., and Argentero, P. (2015). When healthcare professionals cannot do the right thing: A systematic review of moral distress and its correlates. Journal of Health Psychology, 1-17.
Pijl‐Zieber, E., Hagen, B., Armstrong‐Esther, C., Hall, B., Akins, L., & Stingl, M. (2008). Moral distress: an emerging problem for nurses in long‐term care? Quality in Ageing and Older Adults, 9 (2), 39 – 48.