by Karen S. Roth, ANP
In Primary care discussions, nothing strikes fear and anxiety into the hearts of patients and their families more than the mention of end of life issues, palliative care and hospice services. It is quite often a nerve racking discussion for the provider as well. Part of the problem is that the general layperson does not understand what palliative care is and how it differs from hospice care. The definition of Palliative Care has evolved over time. From the opening of St Joseph’s Hospice for the Dying in 1905 and St Christopher’s Hospice in 1967 until the 1980’s, palliative care was largely delivered through Hospice programs. Until recently, palliative care was seen as care provided for people with cancer, who were not receiving active treatment and were in fact dying of their disease.
It is now recognized that the principals of palliative care are just as applicable earlier in the course of any serious illness, even if the disease is potentially curable, and that palliative care can and should be provided alongside disease treatment.
The Center for Medicare and Medicaid Services (CMS) endorsed the following definition:
“Palliative care means patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Throughout the patients illness, palliative care involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information , and choice.”
With this integrated model of care, palliative care is provided at the same time as curative or life-prolonging treatments. Hospice and Palliative Medicine is now recognized as a medical subspecialty however the primary care provider is the usually the first provider to address the issue with the patient and family in the office setting. In order for the large and rapidly growing number of patients with advanced and serious illness to receive timely and high-quality palliative care, it is now crucial that the core principals’ and practices of palliative care be incorporated into the day to day practice of all clinicians. The specialty of palliative medicine arose as a direct result of the hospice movement. Palliative medicine incorporates the holistic care developed by hospice, focusing on symptom management, supporting and assisting with communication, and providing such care to a wider group of patients including those who are NOT dying or who cannot receive or choose not to receive hospice services. While all care that is delivered by hospices can be considered palliative care, not all palliative care is delivered in hospices.
Palliative care aims to relieve suffering in ALL stages of disease and is not limited to end of life care. It is an integrated model of care with palliative services provided at the same time as curative or life-prolonging disease treatment. In contrast, hospice is palliative care specifically offered to the patient and family at end of life when curative or life-prolonging therapy is not beneficial or when its burdens outweigh its benefits.
Studies have shown that earlier discussions between primary care providers and their patients and families, of palliative and hospice care options, which include acknowledgement of the patients serious underlying disease ,greatly increases the likelihood of future enrollment in a palliative or hospice program. Ultimately, palliative care services’ improves patients’ symptoms and the quality of their care at the end of life, allows patients to avoid hospitalization and to remain safely and adequately cared for at home. This leads to better patient and family satisfaction, and significantly reduces prolonged grief among bereaved family members.
