Providing Palliative Care to Family Caregivers Throughout the Bone Marrow Transplantation Trajectory

Research and Practice: Partners in Care

Kimberly Chow, RN, OCN; Nessa Coyle, PhD, ACHPN, FAAN


Journal of Hospice and Palliative Nursing. 2011;13(1):7-13. 

In This Article

Palliative Care in BMT

The National Consensus Project[24] states that the "goal of PC is to prevent and relieve suffering and to support the best possible QOL for patients and their families, regardless of the stage of the disease or the need for other therapies." These goals are directly applicable to the BMT dyad. Despite the high morbidity and mortality seen in this population, the focus of care in BMT remains curative and referrals to the PC team come late if at all.[21] The multiple symptoms exhibited throughout transplant are frequently complex, and poor symptom control has been associated with higher levels of emotional distress for both patients and caregivers.[9] Patients may, for example, experience symptoms that include pain, mucositis, nausea and vomiting, lack of nutrition, anorexia, weight loss, GVHD, diarrhea, and transfusion dependence.[21] Although the transplant team importantly remains at the forefront of supportive care for their patients, early collaboration with a PC team whose expertise is in symptom management and addressing suffering would seem of benefit to the BMT team as well as the patient and family. The PC team can assist the BMT team in addressing the patient's physical and emotional symptoms, which may in turn reduce overall caregiver burden and distress.

In addition to treating the patient's symptoms, the recognition, diagnosis, and treatment of caregiver-specific symptoms to reduce burden are essential. This is an integral part of PC and hospice care. Underscoring the importance of caring for the caregiver, Lederberg[25] introduced the concept of the primary caregiver as psychologically a "second-order patient." As previously stated, the effects of a patient's illness on the caregiver can cause emotional and functional distress at levels equal to or even greater than that of the patients themselves.[12] Caregivers of cancer patients frequently feel that they must contain their own emotional responses to the diagnosis of their loved one to be a source of support and strength. Many are directly or indirectly forced to abandon their careers, assume the role of both parents to their children if a spouse is affected, alienate themselves from social support systems, and participate in critical treatment decisions. Clearly, the concept of treating family caregivers psychologically as second-order patients[25] can be appropriately applied to the BMT population. Palliative care teams are equipped to provide this much needed care.


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