By Sedona Montelongo
Hospice and palliative care chaplaincy, the subspecialty in which I am trained and certified, is often misunderstood or underappreciated. I want to dispel three common myths about palliative care so you can appreciate its utility and perhaps explore it in your ministry. I share this story with you in hopes that we as chaplains can be agents of change.
Yasmine (not her real name), a 24-year-old woman recently graduated from college and engaged to be married, received a devastating diagnosis: acute myeloid leukemia (AML). Within hours of her diagnosis, she was checked into the hospital. Yasmine spent the next eight months in and out of the hospital, mostly in.
At the time, I was working as a dedicated palliative care chaplain with a team consisting of a physician, nurse and social worker. Our team was well-known and respected in the hospital; however, some staff still hesitated to consult palliative care because of confusion that it meant hospice care. That included Yasmine’s oncologist, who was a wonderful and compassionate physician. She recognized that Yasmine would benefit from spiritual support and asked me if I would mind visiting with her. “Yasmine is a very religious person and I think she could use your help,” she said. “But just you, not the whole team. She is not ready for palliative care.” I responded, “All hospice is palliative, but not all palliative is hospice” and agreed to meet with the patient.
Myth 1: Palliative care is synonymous with hospice care.
This confusion stems not only from the patients and families; it also comes from seasoned healthcare providers. This is partly because palliative care is a relatively new practice with its roots in hospice. Therefore, physicians, patients, and families are sometimes reluctant to consider it. Actually, palliative care is a specialty consulting service that ideally consists of a physician, nurse or nurse practitioner, social worker, and chaplain — an interdisciplinary team that focuses on the holistic care of the patient and family. The service benefits patients who have been diagnosed with advanced or chronic illness such as (but not limited to) cancer, congestive heart failure, COPD, and Alzheimer’s disease. The main objective of palliative care is to offer advanced care planning by engaging in a “goals of care” conversation and expert symptom management with an emphasis on quality of life.
Yasmine spoke about her fear of what was coming her way, but also felt determined as she prepared herself mentally and spiritually for her healthcare journey. She had a great faith in God, as well as a wonderful faith community. Yasmine would often talk about how much she loved God and believed he would provide and see her through everything. But midway through her treatment, Yasmine began to question God and experienced profound spiritual distress as she felt abandoned and betrayed by God. When her treatments became grueling and her pain unbearable, she became angry with her family and fiancé. I could see that she was experiencing existential and physical pain that was keeping her from moving forward in her treatments. She would spend weeks in the hospital, but every time she was about to be discharged, she would spike a fever, which meant she could not be released.
At this point, I felt it important to include the entire palliative care team in order to offer Yasmine the best outcome for her illness. I explained to the oncologist how the full team would be able to provide her holistic care of mind, body, and spirit, as well as expertise in symptom management. Her oncologist agreed, and as a result, the palliative care team was able to address Yasmine’s spiritual, psycho/social, and physical needs as she continued to receive treatment for her AML.
Myth 2: Palliative care patients may no longer receive aggressive or curative treatments.
In fact, the best outcome for patients is when they receive palliative care upon diagnosis of a serious illness while pursuing a cure. Palliative care doesn’t signal that a person has given up hope for a recovery; some patients, like Yasmine, recover and move out of palliative care. Others with chronic diseases, such as COPD, may move in and out of palliative care as the need arises. It is not agenda-driven, it is patient-driven, and its goal is to ease pain and suffering while the patient receives treatment for his/her disease.
Myth 3: A palliative care team is not necessary; all that is needed is pain management.
Palliative care is holistic; it understands that pain and suffering can appear in ways that are not just physical. Yasmine’s needs were complex and at times, intense, and it took a team of multidisciplinary professionals to support her. Many times, when faced with serious illness, patients yearn for reconciliation with an estranged spouse or child, and professional chaplains and social workers can assist with these types of spiritual and psycho/social needs that can cause existential pain.
If a cure for a life-threatening disease proves elusive, palliative care can improve the quality of patients’ lives so they live as well as they can for as long as they can. And, when death draws near, palliative care can easily segue into hospice care, in which the patient and family will again receive compassionate care from end-of-life experts.
Eventually, Yasmine was able to return home in between treatments and stay home because her symptoms were managed so well. Additionally, Yasmine was able to have honest conversations with her fiancé and family regarding her needs, and she was beginning to reimage God in a way that helped her cope with her illness and emotions in a healthy manner. Today, I am happy to report that Yasmine is recovered and happily married and living a full and exciting life. Also, her oncologist is a convert and palliative care fan.
Sedona Montelongo, BCC-ACHPC, is a chaplain at St. Joseph’s Hospital and Medical Center in Phoenix, AZ.
