Definition and Current Trend of Palliative Care
Palliative care is defined as a specialized, interdisciplinary type of medical care for people with serious illnesses, their families, and caregivers, according to the National Coalition for Hospice and Palliative Care (NCHPC), the Center to Advance Palliative Care (CAPC), the American Cancer Society (ACS), the Institute of Medicine (IOM), and the World Health Organization (WHO).1-4 The goal of palliative care is to improve both the patient and the family’s quality of life by providing relief from the symptoms, pain, and stress of a serious illness through the assessment, prevention, and management of physical, psychological, social, and spiritual problems.
Palliative care is among the fastest growing fields in healthcare – the number of hospitals with 50 or more beds with a palliative care program increased 164% since 2000.5 Over 1,000 new hospital-based palliative care programs have developed from 2000 to 2010.6Demands for palliative care have increased and will likely continue to grow as the U.S. population gets older6 and the number of Americans over the age of 85 is expected to double to 14.1 million by 2040.7 It is also estimated that 90 million Americans live with serious illness, of which 6 million may benefit from palliative care.8 This number is expected to more than double over the next 25 years.
Despite the growth in palliative care and the expected increase in the demand for these services, palliative care teams saw less than 5% of hospitalized patients in 2015.5 In a 2011 public opinion research poll by the CAPC and ACS, only 8% of 800 adults reported knowing about palliative care.3 A survey was conducted by Kozlov et al. using the Palliative Care Knowledge Scale (PaCKS) in order to identify 301 laypersons’ familiarity with palliative care.9 Of the 13 true/false questions, it was least likely for the item “palliative care is exclusively for people who are in the last 6 months of life” to be answered correctly. Similar lack of knowledge was found in oncologists polled about the range of services provided by palliative care compared to hospice care.10 This misinformation and conflation with hospice care can pose barriers to accessing palliative care. When informed, an overwhelming majority of consumer respondents agreed that education on and access to palliative care would be very important for patients with serious illness.3
Services Provided by Palliative Care
NCHPC’s 2018 National Consensus Project highlights 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 Regardless of diagnosis or prognosis, general palliative care should be considered as a vital and routine part of clinical practice that promotes physical and psychosocial health. All health professionals serving seriously ill patients and their families and caregivers should consider and acquire palliative care knowledge and skills as core competencies. Taking into account the wide range of care, NCHP guidelines emphasize the interdisciplinary and team-based approach to palliative care.1 A team of specially trained doctors, nurses, and other specialists deliver palliative care to provide an added layer of support to maximize patient and family quality of life by coordinating care with a patient’s other doctors and healthcare professionals.3 However, palliative care can also be delivered by healthcare professionals who care for the seriously-ill population but are not palliative care specialists (e.g. primary care physicians, disease-oriented specialists, nurses, social workers, chaplains, and pharmacists).1
The NCHPC, the CAPC, and the IOM note that palliative care can be provided regardless of the diagnosis or the age of the patient and at any stage in a serious illness.1-3 It may be provided with curative treatment and may begin early in the course of a serious illness. A 2015 IOM consensus recommends early integration of palliative care after the diagnosis of a serious illness, which can be provided simultaneously with curative or disease-modifying treatments.2 Despite the recommended early integration of palliative care in the trajectory of illness, patient referral to palliative care services occur much later, at an average of 30 to 60 days before death.11,12 The misunderstanding that palliative care should be provided only after the exhaustion of all treatment options and that it should be reserved only for end of life may limit access to palliative care.13 IOM notes that palliative care should be available across not only the continuum of the illness but also across health care settings, from nursing homes and acute care hospitals to outpatient clinics and in the home.2 Extensive research has shown that more than 50% of people want to be cared for and to die at home, especially patients and caregivers dealing with advanced illness.14 Despite the overwhelming majority of patients and caregivers wishing to die at home, only one-third or less of all deaths occur at home.14 A 2013 Cochrane review of home palliative care found that patients receiving home-based palliative care were significantly more likely to die at home, compared to those receiving usual care.11,12
Evidence for Palliative Care
Multiple studies have demonstrated that palliative care can enhance the quality of life of patients with serious illnesses.15-25 A 2018 systematic review conducted to support the NCHPC’s National Consensus Project guidelines reviewed evidence from multiple systematic reviews on various palliative care interventions.15 They consistently found that interdisciplinary care teams improved the quality of life of patients with serious illness and that music and art therapies improved anxiety and depression. Life review26-28 and dignity therapies,29,30 psychotherapeutic interventions aimed to improve spiritual/existential and relational distress, also had a positive impact on the patients’ spiritual well-being. However, the efficacy of palliative care on patient physical outcomes was inconsistent – comprehensive care and music and art therapies improved the care of physical symptoms whereas pharmacotherapies had inconsistent findings. Grief and bereavement support by palliative care for families and caregivers also had mixed findings, showing improved outcomes for children while finding no consistent findings for adults. A 2016 systematic review and meta-analysis studied the association between palliative care and patient and caregiver outcomes in 43 randomized controlled trials on 12,731 patients and 2,469 caregivers.16 Palliative care interventions were associated with improved patient quality of life and symptom burden and were consistently associated with improved advance care planning, patient and caregiver satisfaction, and lower health care utilization.
A 2010 systematic review of specialist palliative care teams on the outcomes of cancer patients and families analyzed eight randomized controlled trials and 32 observational or quasi-experimental studies.19 The review found that patient outcomes were improved with home, hospital, and inpatient palliative care. Patients experienced improved pain and symptom control, reduced anxiety, and reduced hospital admissions. In 2012, the American Society of Clinical Oncology consensus statement, based on findings from a series of randomized controlled trials, recommended that palliative care services should be integrated into standard oncology practice at the diagnosis of metastatic or advanced cancer.18,20 One randomized controlled trial found that an early palliative care intervention improved not only the quality of life and mood of patients but also increased mean survival. The study randomized 151 non-small-cell lung cancer patients to receive either early palliative care or standard care.17 The study measured quality of life using the Functional Assessment of Cancer Therapy-Lung scale (scale range 0 to 136 [worst to best]), prevalence of depressive symptoms, and survival at baseline and at 12 weeks. When compared to those who received standard care, patients who received early palliative care had a better quality of life (98.0 vs. 91.5, p=0.03) and showed less depressive symptoms (16% vs. 38% p=0.01). In addition, while fewer patients in palliative care received aggressive end-of-life care (33% vs. 54%, p=0.05), patients in palliative care had a longer median survival (11.6 months vs. 8.9 months, p=0.02) when compared to those in standard care.
- 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.
- Center to Advance Palliative Care. What is palliative care? A rapidly growing trend in health care. January 2017. https://www.capc.org/payers-policymakers/what-is-palliative-care/. Accessed Dec 28, 2018.
- Hughes MT, Smith TJ. The growth of palliative care in the United States. Annu Rev Public Health. 2014;35:459-475.
- Population estimates and 2012 national projections. U.S. Census Bureau, 2012.
- Center to Advance Palliative Care. Palliative care facts and stats. 2014. https://media.capc.org/filer_public/68/bc/68bc93c7-14ad-4741-9830-8691729618d0/capc_press-kit.pdf. Accessed Dec 28, 2018.
- Kozlov E, McDarby M, Reid MC, Carpenter BD. Knowledge of palliative care among community-dwelling adults. Am J Hosp Palliat Care. 2018;35(4):647-651.
- Mahon MM, McAuley WJ. Oncology nurses' personal understandings about palliative care. Oncol Nurs Forum. 2010;37(3):E141-150.
- Cheng WW, Willey J, Palmer JL, Zhang T, Bruera E. Interval between palliative care referral and death among patients treated at a comprehensive cancer center. J Palliat Med. 2005;8(5):1025-1032.
- Hui D, Elsayem A, De la Cruz M, et al. Availability and integration of palliative care at US cancer centers. JAMA. 2010;303(11):1054-1061.
- Bruera E, Hui D. Integrating supportive and palliative care in the trajectory of cancer: establishing goals and models of care. J Clin Oncol. 2010;28(25):4013-4017.
- Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013(6):Cd007760.
- Ahluwalia SC, Chen C, Raaen L, et al. A systematic review in support of the national consensus project clinical practice guidelines for quality palliative care, fourth edition. J Pain Symptom Manage. 2018;56(6):831-870.
- Kavalieratos D, Corbelli J, Zhang D, et al. Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis. JAMA. 2016;316(20):2104-2114.
- Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.
- Bakitas M, Lyons KD, Hegel MT, Ahles T. Oncologists' perspectives on concurrent palliative care in a National Cancer Institute-designated comprehensive cancer center. Palliat Support Care. 2013;11(5):415-423.
- Higginson IJ, Evans CJ. What is the evidence that palliative care teams improve outcomes for cancer patients and their families? Cancer J. 2010;16(5):423-435.
- Smith TJ, Temin S, Alesi ER, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol. 2012;30(8):880-887.
- Ferrell B, Sun V, Hurria A, et al. Interdisciplinary palliative care for patients with lung cancer. J Pain Symptom Manage. 2015;50(6):758-767.
- Grudzen CR, Richardson LD, Johnson PN, et al. Emergency department-initiated palliative care in advanced cancer: a randomized clinical trial. JAMA Oncol. 2016.
- Bakitas MA, Tosteson TD, Li Z, et al. Early versus delayed initiation of concurrent palliative oncology care: patient outcomes in the ENABLE III randomized controlled trial. J Clin Oncol. 2015;33(13):1438-1445.
- Zimmermann C, Swami N, Krzyzanowska M, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet. 2014;383(9930):1721-1730.
- Devi PS. A timely referral to palliative care team improves quality of life. Indian J Palliat Care. 2011;17(Suppl):S14-16.
- Keall RM, Clayton JM, Butow PN. Therapeutic life review in palliative care: a systematic review of quantitative evaluations. J Pain Symptom Manage. 2015;49(4):747-761.
- Haber D. Life review: implementation, theory, research, and therapy. Int J Aging Hum Dev. 2006;63(2):153-171.
- Butler RN. The life review: an interpretation of reminiscence in the aged. Psychiatry. 1963;26:65-76.
- Fitchett G, Emanuel L, Handzo G, Boyken L, Wilkie DJ. Care of the human spirit and the role of dignity therapy: a systematic review of dignity therapy research. BMC Palliat Care. 2015;14:8.
- Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M. Dignity and psychotherapeutic considerations in end-of-life care. J Palliat Care. 2004;20(3):134-142.