Hospice care


In 2017, approximately 1.49 million people received hospice services, and 48.2 percent of Medicare beneficiaries who died in 2017 received care in hospice at the time of death (NHPCO, 2019).

The National Hospice and Palliative Care organization (NHPC) developed the following standards of practice for Hospice Programs (2018);

The hospice care team

hospiceA coordinated team of health care professionals, caregivers, and family/friends, all focused on the comfort needs and care preferences of the patient, provide hospice care. The health care team members communicate regularly to adjust the plan of care to meet the changing needs and preferences of the patient and to promote therapeutic family participation. Health care team professionals will usually include:

Hospice clients

Hospice is a program of care for terminally ill patients, regardless of the type of illness. According to the National Hospice and Palliative Care Organization, in 2017, a cancer diagnosis made up 30.1% of all patients in hospice programs. Non-cancer diagnoses were 63.4%. The most common non-cancer diagnoses were heart disease (17.6%), dementia (15.6%), Other (13.9%), Respiratory (11.0%), and stroke or coma (9.4%), and chronic kidney disease (2.3%). Currently, 1,000+ patients a day in the U.S. are dying from COVID-19. The majority of these patients are dying in hospitals receiving treatment as long as possible – accurate statistics about COVID-19 deaths in hospice care is unknown. https://39k5cm1a9u1968hg74aj3x51-wpengine.netdna-ssl.com/wp-content/uploads/2019/07/2018_NHPCO_Facts_Figures.pdf.

Levels of Care

Routine Hospice Care (RHC) is the most common level of hospice care usually provided at the patient's home.

Continuous Home Care (CHC) is additional care provided in the home for a minimum of 8 hours up to 24 hours a day to manage acute symptoms, particularly pain. Some agencies have modified this level of care during these times of COVID-19. More patients are treated in hospital hospice rooms when symptoms are no longer manageable in the home.

Inpatient Respite Care (IRC) is available to provide temporary relief to the patient's primary caregiver, typically offered in a hospital, hospice facility, or a long-term care facility.

General Inpatient Care (GIP) is provided for acute symptom management that cannot be carried out in any other setting.

Hospice satisfaction studies

Core Components of Quality End-of-Life Care

The Institute of Medicine (IOM, 2015) authors list the following as core components of quality end of-life care:

    1. Frequent assessment of the patient's physical, emotional, social, and spiritual well-being
    2. Management of emotional distress
    3. Referral to expert-level palliative care
    4. Referral to hospice if the patient has a prognosis of 6 months or less
    5. Management of care and direct contact with patient and family for complex situations by a specialist- level palliative care physician
    6. Round-the-clock access to coordinated care and services
    7. Management of pain and other symptoms
    8. Counseling of patient and family
    9. Family caregiver support
    10. Attention to the patient's social context and social needs
    11. Attention to the patient's spiritual and religious needs
    12. Regular personalized revision of the care plan and access to services based on the changing needs of the patient and family

Hospice Quality Reporting

Section 3004 of the Patient Protection Affordable Care Act, 2010, requires that all Medicare-certified hospices submit quality of care data to the Centers for Medicare and Medicaid Services (CMS). Hospice providers that fail to meet reporting requirements will receive a 2-percentage point reduction in reimbursement. The CMS uses this data to calculate quality compliance with measures endorsed by the National Quality Forum (NQF).

The current quality measures include:

Research on hospice quality and outcomes

Kumar et al. (2017) interviewed 2,307 families of deceased patients with advanced lung or colorectal cancer who were enrolled in the Cancer Care Outcomes Research and Surveillance study. The outcomes reported by families of patients with hospice care were compared to matching families of patients who did not receive hospice care. The family members were asked about the relief of common symptoms such as pain, dyspnea), concordance with patients' wishes for EOL care, and quality of EOL care. Here were the results:

Measure  Hospice Nonhospice
The right amount of pain management 80% 73%
Help with dyspnea 78% 70%
Wishes were followed 80% 74%
Excellent EOL care 57% 42%

Families whose loved ones had more than 30 days on hospice care reported more excellent EOL care. The average length of stay for hospice patients during 2018 was 77.9 days (Trella, 2019). Unfortunately, many patients receive hospice care for only a week or less. One week can be too short a time to receive the full benefit of hospice care. 

In a study by the Pew Research Center (2013), while 57% of adults would prefer to stop treatment so they could die if they had an incurable, painful disease, 35% would tell their doctors to do everything to save their lives. The remaining 8% were uncertain. Health professionals need to provide information about hospice while respecting the preferences of the patient.

When an illness has advanced beyond the possibility of a cure, research has shown that early enrollment in hospice care helps patients live longer with a better quality of life (Connor, Pyenson, Fitch, Spence & Iwasaki, 2007). Other benefits include assistance for the family that may decrease complicated bereavement and increase preparation for the death of a loved one. Nilsson et al. (2011) found younger patients who were white without a DNR order and in the ICU during the last week of life had the worse quality of life at the end of life. Patients who reached a feeling of inner peace and were cared for by an oncologist who saw them as a person were more likely to have a better quality of life.


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References

Committee on approaching death: Addressing key end of life issues, institute of Medicine (2015). Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life 1st Edition. Washington, DC: National Academies Press.

Connor, S.R., Pyenson, B., Fitch, K., Spence, C. & Iwasaki, K. (2007). Comparing hospice and nonhospice patient survival among patients who die within a three-year window. J Pain Symptom Manage,33(3),238-46.

Hospice Care in America (2015). NHPCO's Facts and Figures. April 14, 2016 retrieved from http://www.nhpco.org/sites/default/files/public/Statistics_Research/2015_Facts_Figures.pdf

Hospice Quality Measures. CMS.gov
https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/Hospice-Quality-Reporting/Current-Measures.html

Kumar, P,, Wright, A.A., Hatfield, L.A., Temel, J.S. & Keating, N.L. (2017). Family Perspectives on Hospice Care Experiences of Patients with Cancer. J Clin Oncol. 35(4), 432-439. doi:10.1200/JCO.2016.68.9257

National Voluntary Consensus Standards for Palliative Care and End-of-Life Care. (2006). National Quality Forum. April 14, 2016, retrieved from http://www.qualityforum.org/Projects/Palliative_Care_and_End-of-Life_Care.aspx

Nilsson, M. E., Zhang, B., Reitschuler-Cross, E., Wright, A. A, Gao, X., Temel, J. S. et al. (2011). What leads to better quality of life at the end of life? J Clin Oncol. 29(15), 9040

Hospice Quality Measures. CMS.gov
https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/Hospice-Quality-Reporting/Current-Measures.html

Pew Research Center. Religion & Public life, polling analysis. Views on End-of-Life Medical Treatments 11/21/2013. Accessed 5/13/2016 http://www.pewforum.org/2013/11/21/views-on-end-of-life-medical-treatments/

Terry Altilio, Shirley Otis-Green & Constance M. Dahlin (2008) Applying the National Quality Forum Preferred Practices for Palliative and Hospice Care: A Social Work Perspective, Journal of Social Work in End-of-Life & Palliative Care, 4:1, 3-16, DOI: 10.1080/15524250802071999

Trella Health (2019) Industry Trend Report 2019. https://www.trellahealth.com/wp-content/uploads/2019/11/Trella-Industry-Trend-Report-2019.pdf

 

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