Palliative Care When There is No Cure

My role as a pediatric palliative and hospice medicine physician is to provide holistic care for patients with life-limiting and threatening illnesses. Effective palliative and hospice care takes into consideration the following aspects of care:

• Physical health (ex. management of pain, nausea, constipation, sleep issues, etc.)
• The role of spirituality/religion in medical decision-making
• Psychological health
• Social determinants of health (ex. job stressors, financial burdens, family structure, sibling support, etc.)
• Ethical and legal considerations
• Goals around what care looks like in different settings

Through exploration of these domains, my job is to help parents and other caretakers understand complex medical information, to explore goals of care for their child, and to help them navigate difficult decision-making.

In addition, the care of a child with a life-limiting and/or –threatening illness usually involves a robust team of multiple providers and staff. The involvement of a multidisciplinary team is essential to provide well-rounded care. However, sometimes, communication may become confusing and complicated when treatment involves a large team. Therefore, the palliative team may also get involved to help promote clear communication and to serve as a sounding board for the family and patient as they traverse through their medical journey.

Palliative and hospice care can be provided in a myriad of settings. The team can get involved during in-patient admissions, can follow-up during out-patient clinic visits, and at times can also offer home-based support. The goal of this multidimensional model is to provide close continuity of care that is unique to each family and individual’s specific physical and psychosocial needs.

In addition, this care is provided through use of an interdisciplinary approach which may include a team of doctors, nurse practitioners, social workers, chaplains, and psychologists to provide comprehensive management of all aspects of care. This type of care involves a deep understanding of each family’s definition of quality of life, joy, suffering, hopes, and worries and how these definitions are impacted by the illness trajectory. Palliative and hospice care aims to provide dignified care that is unique to each patient and family need. Through the use of this diverse approach, the goal is to take care of the whole person and family, rather than just the diagnoses.

If you are a caretaker and/or parent of a child with a life- limiting or –threatening illness, know that palliative and hospice care is there to provide an extra-layer of support as you navigate through the medical complexities.

Listen to a podcast about palliative and hospice care, featuring our own Dr. Lisa Humphrey.