Scope of Palliative Care
Palliative care is defined as a specialized, interdisciplinary medical care for people with serious illnesses, their families, and caregivers.1-4 The goal of palliative care is to improve both the patient and the family’s quality of life by providing relief from symptoms, pain, and stress of a serious illness through the assessment, prevention, and management of physical, psychological, social, and spiritual problems. The World Health Organization and the 2018 National Consensus Project by the National Coalition for Hospice and Palliative Care (NCHPC) highlight eight key domains of palliative care that draw attention to the physical, psychological, social, religious, cultural, ethical, and legal aspects of care, as well as the coordination of care and the care of patients nearing end of life.1,5
A 2018 systematic review on multicomponent palliative care interventions for patients with advanced chronic diseases analyzed 64 studies.6 The components of palliative care most commonly received by patients were symptom management (88%), psychological support/counseling (81%), disease education (75%), care coordination (50%), advance care planning (45%), spiritual/existential support (33%), and bereavement services (9%). A study in 2000 analyzed data of 325 patients who were referred to a palliative care service in an academic medical center, over a 15-month period.7 Symptoms were addressed in 74.8% of those who were referred to a palliative care service, among which pain was the most frequently addressed symptom (73.3%), followed by dyspnea (42.8%). Discussion around goals of care and Do Not Resuscitate orders was conducted in 94.2% and 84.1% of cases, respectively. Spiritual needs were addressed in 31.4% and supportive counseling was provided for patients or families in 73.5% of cases.
Illness Understanding, Goals of Care, and Coordination of Care
Morrison and Meier suggest that assistance in discussions on understanding of prognosis and goals of care, financial planning, and programmatic (e.g., referral to nurse and home care services) and family support should be provided by palliative care for patients with serious chronic illnesses.8 It is increasingly being recognized that healthcare professionals should be able to coordinate social and medical services for patients and families. Palliative care should make the patient’s preferences the basis for the plan of care.9
Physical Symptoms and Pain
Pain is experienced by a large percentage of patients with advanced illnesses, with approximately one-third of those with cancer receiving active treatment and two-thirds of those with advanced malignant disease reporting pain.10 Fatigue and dyspnea are other prevalent symptoms in patients with advanced illnesses.11 According to the NCHPC guideline for palliative care, pain as well as non-painful symptoms such as shortness of breath, nausea, fatigue, weakness, anorexia, insomnia, and constipation require regular assessment and documentation under palliative care.1,12 In addition, palliative care should assess and document patient functional capacities, treatment side effects, efficacies, and alternatives in consideration of patient and family preferences. When hospital-based inpatient palliative care consultation service for 368 patients was audited and evaluated, 87% of the patients showed improvements in pain and other symptoms after receiving palliative care.13
Psychological and Bereavement Support
Psychological and psychiatric issues should also be carefully assessed and managed under palliative care.1,9 Providing psychosocial support to patients and caregivers with advanced illnesses is critical due to the high prevalence of diagnosable depression, anxiety, and psychiatric disorder in this population.8 Approximately 30-40% of cancer patients as well as those with heart disease, chronic obstructive pulmonary disease, and end-stage renal disease show high rates of mental health disorders.14 In addition, family members should be given access to grief and bereavement programs.
Sociocultural Support
Palliative care should make an interdisciplinary assessment of social and culture-specific needs and refer patients and family members to appropriate services and care.1,9 Palliative care should work to support language and cultural barriers15 as well as concerns surrounding gender identity and expression,1 relational issues,15 family involvement in care.
Spiritual, Religious, and Existential Support
Palliative care should care for patients and family members in honor of their spiritual or religious beliefs and practices.1 The interdisciplinary palliative care team should screen and assess for spiritual needs and integrate chaplain or clergy support into their care, if appropriate. Support should also ensure that religious or spiritual activities can be practiced during the continuum of care.16
Ethical and Legal Support
Palliative care should be practiced in honor of patient preferences and surrogate decision-makers and legal proxies.1 Models surrounding legal support by palliative care include these four key components: fostering paralegal skills in the care setting; formalizing access to skilled legal advice; legally empowering patients and family members; and raising healthcare providers’ awareness of rights.17
References
- National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care, 4th edition. Richmond, VA: National Coalition for Hospice and Palliative Care; 2018. https://www.nationalcoalitionhpc.org/ncp.
- IOM (Institute of Medicine). 2014. Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press.
- Elizabeth, H, McInturff, B. 2011 Public opinion research on palliative care. Center to Advance Palliative Care (CAPC) with support from the American Cancer Society (ACS) and the American Cancer Society Cancer Action Network (ACS CAN). 2011. https://media.capc.org/filer_public/18/ab/18ab708c-f835-4380-921d-fbf729702e36/2011-public-opinion-research-on-palliative-care.pdf. Accessed Dec 26, 2018. .
- World Health Organization. 2018. WHO definition of palliative care. https://www.who.int/cancer/palliative/definition/en/. Accessed Dec 26, 2018.
- Hawley P. Barriers to access to palliative care. Palliat Care. 2017;10:1178224216688887.
- Phongtankuel V, Meador L, Adelman RD, et al. Multicomponent palliative care interventions in advanced chronic diseases: a systematic review. Am J Hosp Palliat Care. 2018;35(1):173-183.
- Manfredi PL, Morrison RS, Morris J, Goldhirsch SL, Carter JM, Meier DE. Palliative care consultations: how do they impact the care of hospitalized patients? J Pain Symptom Manage. 2000;20(3):166-173.
- Morrison RS, Meier DE. Clinical practice. Palliative care. N Engl J Med. 2004;350(25):2582-2590.
- Kelley AS, Morrison RS. Palliative care for the seriously ill. N Engl J Med. 2015;373(8):747-755.
- Fine PG, Davis M, Muir C, Schwind D, Haileab B. Bridging the gap: pain medicine and palliative care. Pain Med. 2013;14(9):1277-1279.
- Barbera L, Seow H, Howell D, et al. Symptom burden and performance status in a population-based cohort of ambulatory cancer patients. Cancer. 2010;116(24):5767-5776.
- Smith L. Guidelines for delivering quality palliative care. Am Fam Physician. 2006 Mar 15;73(6):1104-1111.
- O'Mahony S, Blank AE, Zallman L, Selwyn PA. The benefits of a hospital-based inpatient palliative care consultation service: preliminary outcome data. J Palliat Med. 2005;8(5):1033-1039.
- Kozlov E, Niknejad B, Reid MC. Palliative care gaps in providing psychological treatment: a review of the current state of research in multidisciplinary palliative care. Am J Hosp Palliat Care. 2018;35(3):505-510.
- Kemp C. Cultural issues in palliative care. Semin Oncol Nurs. 2005;21(1):44-52.
- Delgado-Guay MO. Spirituality and religiosity in supportive and palliative care. Curr Opin Support Palliat Care. 2014;8(3):308-313.
- Ezer T, Burke-Shyne N, Hepford K. Legal support for palliative care patients. J Pain Symptom Manage. 2018;55(2s):S157-s162.