Where can I receive palliative care?

A 2015 Institute of Medicine consensus notes that palliative care should be available across not only the continuum of an illness, but also across health care settings, from nursing homes and acute care hospitals to outpatient clinics and home.¹

Hospital-based Inpatient Palliative Care Services

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 2000.² Over 1,000 new hospital-based palliative care programs have developed from 2000 to 2010.³ In 2017, over 90% of 300+ bed hospitals provided inpatient palliative care services.⁴

In hospital-based settings, palliative care is primarily delivered as an interdisciplinary consultation team in acute care.⁵ Hospitals can also provide palliative care in dedicated palliative care inpatient units or by having palliative care specialists join an existing care team. A systematic review of hospital-based palliative care teams (13 studies; n = 2,862) has shown that patients referred to hospital-based palliative care teams showed improved quality of life, symptom distress, and spiritual distress when compared to patients who received usual care.⁶

Outpatient Palliative Care Services

Major medical professional and regulatory organizations have called for the need to provide palliative care across a wide-range of settings.^1,7,8 However, initiatives to research and expand the reach of outpatient palliative care services have been suboptimal. A 2011 survey administered by the National Health Foundation on 377 California-based hospitals found that, of the 361 hospitals that responded, only 18% of the 136 hospitals with an adult palliative care service provided outpatient palliative care services.⁷ This number represented only 7% of the 361 hospitals overall. A 2010 survey of palliative care services in 71 National Cancer Institute (NCI) cancer and 71 non-NCI cancer centers in the US found that when compared to non-NCI cancer centers, the NCI cancer centers were significantly more likely to provide palliative care services.⁹ While 59% of NCI cancer centers provided outpatient palliative care clinic services, only 22% of non-NCI cancer centers did (p<0.001). 

Home-based Palliative Care Services

Home-based palliative care programs have rapidly expanded in the post-Affordable Care Act period.¹⁰ In response to high demands by patients with serious illnesses and their caregivers, hospitals and health system-based programs have expanded their services to the community. Preliminary data from the palliative care mapping project by the Center to Advance Palliative Care identified 350 home-based palliative care programs provided across 39% of US counties.

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 illnesses.^11,12 However, despite the overwhelming majority of patients and caregivers wishing to die at home, only one-third or less of all deaths occur at home.¹¹ A 2013 Cochrane review studied the effectiveness of home palliative care services (23 studies; n = 41,603) on patients with advanced illnesses and their caregivers.¹¹ Data from five randomized controlled trials and two controlled clinical trials found that patients receiving home-based palliative care were significantly more likely to die at home, compared to those receiving usual care (odd ratio 2.21, 95% confidence interval [1.31 – 3.71], p=0.003).

Long-term Care Facilities and Community-based Palliative Care Services

Long-term care facilities include assisted living facilities, nursing homes, group homes, and personal residences.¹³ These facilities provide health and supportive services such as medical and rehabilitative care, personal care, and transportation to people who are unable to provide this care for themselves. Although a 2010 population study estimated that 1.8 million Americans live in nursing homes,¹⁴ palliative care needs in long-term care facility settings are often inadequately met.¹³ A 2014 national online survey of 316 nursing facility directors studied the presence and implementation of hospice care, palliative care, and comfort care in their facilities.¹⁵ Hospice care was available at a much higher rate (73.2%) in nursing home facilities when compared to palliative care (43.2%) and comfort care (54.2%). Only 42% of the facilities with formal palliative care services had consultations provided by hospice/palliative care board certified physicians.

Hospice care is a form of palliative care provided exclusively for patients with a prognosis of 6 months or less.¹⁵ Although utilization of hospice care in nursing home settings has shown to be associated with improved pain and symptom management and lower rates of hospitalizations and invasive therapies,^5,16 as of 2009, only 6% of nursing home residents elect hospice benefits annually, on a national level.^16,17

^References

1. 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.
2. 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.
3. Hughes MT, Smith TJ. The growth of palliative care in the United States. Annu Rev Public Health. 2014;35:459-475.
4. Center to Advance Palliative Care. Designing an Inpatient Palliative Care Program. March 2019. https://www.capc.org/toolkits/starting-the-program/designing-an-inpatient-palliative-care-program/. Accessed April 15, 2018.
5. Kelley AS, Morrison RS. Palliative care for the seriously ill. N Engl J Med. 2015;373(8):747-755.
6. Higginson IJ, Finlay I, Goodwin DM, et al. Do hospital-based palliative teams improve care for patients or families at the end of life? J Pain Symptom Manage. 2002;23(2):96-106.
7. Rabow MW, O'Riordan DL, Pantilat SZ. A statewide survey of adult and pediatric outpatient palliative care services. J Palliat Med. 2014;17(12):1311-1316.
8. 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.
9. 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.
10. Bowman BA, Twohig JS, Meier DE. Overcoming barriers to growth in home-based palliative care. J Palliat Med. 2019;22(4):408-412.
11. 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.
12. Higginson IJ, Sen-Gupta GJ. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med. 2000;3(3):287-300.
13. Ersek M, Carpenter JG. Geriatric palliative care in long-term care settings with a focus on nursing homes. J Palliat Med. 2013;16(10):1180-1187.
14. Kaye HS, Harrington C, LaPlante MP. Long-term care: who gets it, who provides it, who pays, and how much? Health Aff. 2010;29(1):11-21. (1).
15. Lester PE, Stefanacci RG, Feuerman M. Prevalence and description of palliative care in US nursing homes: a descriptive study. Am J Hosp Palliat Care. 2016;33(2):171-177.
16. Miller SC, Lima J, Gozalo PL, Mor V. The growth of hospice care in U.S. nursing homes. J Am Geriatr Soc. 2010;58(8):1481-1488.
17. Stevenson DG, Bramson JS. Hospice care in the nursing home setting: a review of the literature. J Pain Symptom Manage. 2009;38(3):440-451.