What is Palliative Care?
According to the World Health Organization (2018), palliative care is
“an approach to care that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual” (WHO definition of palliative care in Fox et al, 2018).
To simplify this definition, the purpose of palliative care (PC) is to improve the quality of life and provide relief of suffering. It is provided to those facing life-threatening, serious illness by identifying the source of issues such as pain, and other physical, emotional, social, and spiritual issues and concerns. Durepos et al (2017) state the goal of PC is to “reduce and prevent suffering which in turn improves quality of life”. According to these authors, the definition of quality of life is to “decrease symptoms of pain, physical and mental stress, isolation” for patients and their families. In fact, the definition for the word palliate literally means to relieve symptoms of pain and suffering (Vermont Assembly of Home Health and Hospice Agencies, 2019).
Palliative care extends the principles of hospice care to a broader population. Duprepos et al (2017) further elaborated that PC includes open communication regarding prognosis and trajectory of the disease and advance care planning. PC is not just for the end of life, although it was originally developed for people with terminal illness according to WebMD. (Palliative care center. When is palliative care appropriate? Retrieved January 14, from http://www.webmd.com/palliative-care/when-is-palliative-care-appropriate). Its services can be administered in the patient’s home, outpatient clinic, nursing home, assisted living, hospital, prison, or homeless shelter—practically anywhere. It allows treatment for a cure of the serious illness to continue, and the patient can keep their primary care physician in most cases. General or primary PC is provided by the patient’s main doctor, while a PC specialist deals with more complicated issues, symptoms, or coping difficulties (Levine, 2019).
Palliative care is a team approach requiring a doctor’s referral. The team will include a physician who has specialized expertise in pain and symptom management/control, and depending on the needs of the patient and family, can include a nurse practitioner, skilled nurses, social workers, chaplains, pharmacists, dieticians, and therapists such as speech, physical and/or occupational (Vermont Assembly of Home Health and Hospice Agencies, 2019). These therapy referrals are based on “anticipated benefit and burden on the intervention” per the National Hospice and Palliative Care Organization (NHPCO) with burden being an undefined term in this context (NHPCO, 2019). (Clinical practice guidelines for quality palliative care, 4th edition. National Hospice and Palliative Care Organization. Retrieved May 7, 2019 from https://www.nhpco.org/resources/community-based-palliative-care). In some cases, the PC team can provide transportation to doctor’s appointments, assist in providing meals, and manage payment of patient’s bills (Turn Key Health, 2018).
PC is focused on relieving symptoms such as pain, nausea, depression, loss of appetite, and breathing or sleep difficulties (Nine top questions about palliative care vs. hospice care. February 25, 2109. Retrieved February 27, 2019 from https://dailycaring.com/9-top-questions-about-palliative-care-vs.hospice-care/). By addressing these issues and family concerns, PC can delay or prevent institutionalization and decrease financial burden. PC is unlimited in how long services can be maintained as long as treatment is beneficial (Levine, 2019). It can reduce costs pertaining to unnecessary treatments and procedures in addition to improving communication among patients, family, and healthcare providers (Geriatric Review, 7th Edition). Advanced care planning and assistance with document preparation, transition of care (change of care setting/level of care), medication management, and bereavement services can also be provided by PC per NHPCO (2019).
The benefits of PC services are quite pronounced. These include assessment and coordination of care by a team that has specialty training in serious illnesses, decreased costs to patient and family, reduced pain and discomfort, psychosocial and spiritual support, home care assistance, etc. It almost sounds like a fairy tale! So, what’s the catch?
It turns out there are many catches to this complicated issue of palliative care.
Sources:
Durepos P, Wickson-Griffiths A, Hazzan A, Kaasalainen S, Vastis V, Battistella L, Papaioanou A. Assessing palliative care content in dementia care guidelines: A systematic review. Journal of Pain and Symptom Management, 2017; 53(4):804-13.
Fox S, Fitzgerald C, Dening K, Irving K, Kemohan W, et al. Better palliative care for people with dementia: Summary of interdisciplinary workshop highlighting current gaps and recommendations for future research. BMC Palliative Care, 2018;17:9.
How and where to get palliative care: Start the conversation. Vermont Assembly of Home Health and Hospice Agencies, 2019. Retrieved May 7, 2019 from http://startthecoversationvt.org/palliative-care-hospice/palliative-care.
Levine H. The 411 on palliative and hospice care. Brain & Life, 2019; Feb/March:8-9.
NHPCO Clinical Practice Guidelines for Quality Palliative Care, 4th Edition (2018) from the Center to Advance Palliative Care, 2019.
Palliative care and hospice: Understanding the differences part 1. Turn Key Health, 2018. Retrieved May 8, 2018 from https://turn-keyhealth.com/understanding-the-differences-of-palliative-care-and-hospice.
Palliative care frequently asked questions. Geriatric Review Syllabus 7th edition and America’s Care of Serious Illness 2011: A state-by-state report card on access to palliative care in our nation’s hospitals. Ann. Itern Med, 1992;117(4):351.