Person-centered supportive care, advance care planning, communication, spiritual and existential assessment, symptom management, pain control. All of these terms describe components of palliative care, which is NOT just end of life cancer care. Rather, palliative care is a philosophy of care with the goal of preventing and relieving suffering and supporting the best possible quality of life (The National Consensus Project for Quality Palliative Care, 2009*). As life expectancy increases, the population ages, and the number of people living with serious and chronic illness multiplies, medical model, disease-based, cure-driven care often falls short. However, palliative care can complement traditional disease-based care and offer interdisciplinary, holistic-focused, comprehensive care for the patient and family. Palliative care, similar to the paradigm of nursing in general, addresses human responses to illness and suffering. Caring for the complete person (the biopsycho-social being) and therapeutic use of self are basic tenets of nursing which are ideally suited for palliative care in any setting. The therapeutic nursepatient relationship allows for thorough assessment of the patient’s health/illness experience, and provides a medium for comfort and healing.
What is the difference between palliative care and hospice? Palliative care and hospice differ in location of caregiving, timing, and payment for services. In general, hospice care focuses on comfort care rather than aggressive disease-curing treatments. To be eligible for hospice, illness must be terminal and within six months of death. Palliative care acts to fill the gap for patients who want and need comfort at any stage of any illness, whether terminal, acute or chronic. In a palliative care program, there is no expectation that life-prolonging therapies will be avoided. There is no timing eligibility for palliative care. Hospice care may be given at home or in a hospice facility, whereas palliative care can be provided anywhere, in the home, hospital, clinic, or extended care facility. Medical insurance coverage varies for hospice and palliative care services. Hospice is often offered as an all-inclusive benefit (paying for all services such as medications, nursing, wound care), but with limits on the coverage. Palliative care services are covered separately, so each component would be billed separately as traditional medical care services are billed.
case scenario Sara T. is a 60 year old woman with rheumatoid arthritis, diabetes, hypertension, and depression who became homebound after bilateral knee replacements for osteoarthritis related to obesity. Traditional medical care options are limited for homebound patients such as Sara. Newer immunologic medications to control chronic pain and inflammation of RA would require travel to an infusion center and/or frequent monitoring. Monitoring of all her chronic conditions requires regular lab work and follow up visits. Home care nursing for patient’s such as Sara are limited by eligibility and recertification criteria. Since she did not require skilled nursing, and her mobility was so limited that she did not show progress with short courses of home physical and occupational therapy, Sara did not qualify for home nursing services. Sara is an ideal patient for primary care at home with a palliative care component. She will likely never be independent, but the goal is to increase mobility, reduce pain, and prevent emotional and physical suffering. With a palliative care philosophy, and a health care provider willing to provide house calls and coordinate care, active treatment and supportive care can be delivered at the same time.
Oral medication was ordered to provide active treatment for her RA, pain medication was titrated, and therapy started for depression. Occupational and physical therapy is focused on ability to use an electronic wheel chair which will greatly increase her mobility.
How can I bring the palliative philosophy to my nursing care? To incorporate palliative care into primary (or any specialty) care, think of it not as an end, but a journey. Advance care planning should be part of that journey for patients and their families. Educate them about having a surrogate decision maker, advance directive or living will, and out-of-hospital orders for life-sustaining treatment such as the MOLST form here in Maryland (www.marylandmolst.org). Using an interdisciplinary team which includes physical and occupational therapists, mental health providers, nutritionists, chaplains, and social workers is often challenging in the community, but may be found through, county government agencies, local churches, low-cost fee-for-service providers, and not-for-profit agencies. Perhaps the most important thing in palliative care is communication. Good communication skills can easily be incorporated into any practice and used to support the goal of enhancing the quality of life. Giving patients bad news, discussing goals of care, having family meetings, assessing suffering and spiritual distress all depend on good communication skills with open-ended questions, listening, and periods of silence.