6. Valid measures exist for some aspects of the end-of-life experience; however, measures have not been used consistently or validated in diverse settings or with diverse groups.
Despite best efforts to support all patients near death, research to validate interventions has mainly focused on cancer patients. The conference statement recommends increased funding for end-of-life research.
2 The research should include diverse populations, such as children; people with end-stage heart, lung, and kidney disease; and those with psychiatric disabilities and addictions.
Several recent studies have focused on dying children. A study by Kreicbergs and colleagues in the
Journal of Clinical Oncology concluded that physical pain and the moment of death were the two most important issues for parents of children with cancer.
15 Another study by Solomon and colleagues in
Pediatrics stated the “need for more hospital-based ethics education and more interdisciplinary … discussion of inherently complex and stressful pediatric end-of-life cases.”
16 Areas at issue included appropriate goals of care, medically supplied nutrition and hydration, appropriate use of paralytic agents, and regard for the dead donor rule.
16 A study employing parts of the adult Needs at the End of Life Screening Tool (NEST) used screening questions to determine the needs of children at the end of life.
17 Using the NEST data, Donnelly and colleagues proposed a model that included the following cluster of needs: pain, decision-making, medical system access and quality, dignity and respect, family-oriented care, spirituality, and psychosocial issues.
18 The same study called for development of a clinical measure to evaluate pediatric needs at the end of life.
18
The NIH experts concluded that more studies like these need to be done with the other special populations and that varied settings such as the home, hospice, and long-term and acute care institutions should be investigated.
2 Finally, the panel recommended the creation of a network of end-of-life investigators and well-defined cohorts to facilitate interdisciplinary, multisite studies.
2 7. End-of-life care is often fragmented among providers and provider settings, leading to a lack of continuity of care and impeding the ability to provide high-quality, interdisciplinary care.
Continuity of care, so crucial for this population, is often missing. Numerous specialists cobble together treatment approaches. Not all services are available under one roof or from a single provider. Patients often feel left out of discussions and decision-making. Current financial incentives foster lower quality of care and lack of continuity. Differing skill levels of providers and lack of information exchange further erode outcome.
28. Enhanced communication among patients, families, and providers is crucial to high-quality end-of-life care.
Good communication is critical for effective interventions in symptom management, the spiritual aspects of dying, decision-making regarding life-sustaining treatment, family caregiving, and bereavement. Communication among providers, patients, and families can improve the quality of care and generate gratitude as well as useful criticism. The NIH panel suggests using demonstrations in clinical settings to evaluate models of care delivery and to overcome barriers to effective care. The panel encourages inter-institute coordination and increased funding to enhance provider knowledge related to end-of-life care.
2 A study published by Casarett and colleagues demonstrates that a simple, low-cost communication intervention “can improve the quality of end-of-life care and decrease resource utilization.”
19
9. The current Medicare hospice benefit limits the availability of the full range of interventions needed by many persons at the end of life.
In order to qualify for hospice under the Medicare Benefits Act, four criteria must be met: 1) the patient must be eligible for Medicare Part A; 2) a doctor and the hospice medical director must certify that the patient has a terminal illness with 6 months or less to live; 3) the patient must sign a statement choosing hospice care instead of other Medicare-covered benefits; and 4) care must be provided by a Medicare-approved hospice program.
20 The Centers for Medicare and Medicaid Services decided that the 1997 Balanced Budget Act's Medicare provisions regarding coverage of services by PAs did not apply to hospice. Medicare beneficiaries currently cannot receive hospice care from PAs, and the current Medicare Hospice Benefit does not allow PAs to write orders for hospice referral. The AAPA continues to encourage members of Congress to support the Physician Assistants Continuity of Care Act, which, if passed, would allow PAs to order home health, hospice, and skilled nursing facility care as delegated by their supervising physicians and to provide hospice care directly to patients
.21 The NIH panel recommends developing, testing, and evaluating new models of end-of-life care for Medicare beneficiaries. As the largest payer for hospice care in the United States, Medicare has considerable influence on the use of hospice and the finances connected to it.
22 New measures are needed to overcome limitation and barriers to the current Medicare hospice benefit.
SUMMARY
The NIH State-of-the-Science Conference showed that much work still needs to be done to address the needs of patients at end of life. Whether young or old, such patients need and deserve the highest possible quality of life as they are dying. More randomized controlled studies need to be done, and appropriate new legislation needs to be passed. PAs can download the NIH State-of-the-Science Conference Statement at http://consensus.nih.gov/PREVIOUSSTATEMENTS.htm#EndOfLifeCare or obtain a written copy from the Office of Medical Applications of Research, National Institutes of Health, 6100 Executive Blvd, Rm 2B03, MSC 7523, Rockville, MD 20892; (800) 644-2667. JAAPA
Joan Malespina lives in South Orange, New Jersey. She has indicated no relationships to disclose relating to the content of this article.
REFERENCES 1. National Institutes of Health State-of-the-Science Conference on Improving End-of-Life Care. Program & Abstracts. Bethesda, MD: December 6-8, 2004. http://consensus.nih.gov/2004/2004EndOfLifeCareSOS024Program.pdf. Accessed October 1, 2007.
2. National Institutes of Health. NIH State-of-the-Science Conference Statement on Improving End-of-Life Care. December 6-8, 2004;21(3). http://consensus.nih.gov/2004/2004EndOfLifeCareSOS024main.htm. Accessed October 1, 2007.
3. Slevin ML, Stubbs L, Plant HJ, et al. Attitudes to chemotherapy: comparing views of patients with cancer with those of doctors, nurses, and the general public. BMJ. 1990;300(6737):1458-1460.
4. Feeg VD, Elebiary H. Exploratory study on end-of-life issues: barriers to palliative care and advance directives. Am J Hosp Palliat Med. 2005;22(2):119-124.
5. Novelli WD. Beyond fifty: America's future. AARP Web site. http://www.aarp.org/about_aarp/aarp_leadership/on_issues/aging_issues/a2002-12-31-novellicleveland.html. Accessed October 1,
2007.
6. Shega JW, Levin A, Hougham GW, et al. Palliative Excellence in Alzheimer's Care Efforts (PEACE): a program description. J Palliat Med. 2003;6(2):315-320.
7. Aminoff BZ, Adunsky A. Dying dementia patients: too much suffering, too little palliation. Am J Hosp Palliat Med. 2005;22(5):344-348.
8. Aminoff BZ, Purits E, Noy S, Adunsky A. Measuring the suffering of end-stage dementia: reliability and validity of the Mini-Suffering State Examination. Arch Gerontol Geriatr. 2004;38(2):123-130.
9. Fox E, Landrum-McNiff K, Zhong Z, et al; for SUPPORT Investigators. Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. JAMA. 1999;282(17):1638-1645.
10. Christakis NA. Death Foretold: Prophecy and Prognosis and Medical Care. Chicago, IL: University of Chicago Press; 1999.
11. Hofmann JC, Wenger NS, Davis RB, et al; for SUPPORT Investigators. Patient preferences for communication with physicians about end-of-life decisions. Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment. Ann Intern Med. 1997;127(1):1-12.
12. Few oncologists willing to estimate time left to dying patients. Hospice News. Am J Hosp Palliat Med. 2005;22(4):252-253.
13. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. http://www.nationalconsensusproject.org/Guideline.pdf. Accessed October 1, 2007.
14. Silveira MJ, Kabeto MU, Langa KM. Net worth predicts symptom burden at the end of life. J Palliative Med. 2005;8(4):827-837.
15. Kreicbergs U, Valdimarsdottir U, Onelov O, et al. Care-related distress: a nationwide study of parents who lost their child to cancer. J Clin Oncol. 2005;23(36):9162-9171.
16. Solomon MZ, Sellers DE, Heller KS, et al. New and lingering controversies in pediatric end-of-life care. Pediatrics. 2005;116(4):872-883.
17. Emanuel LL, Alpert HR, Emanuel EE. Concise screening questions for clinical assessments of terminal care: the needs near the end-of-life screening tool. J Palliat Med. 2001;4(4):465-474.
18. Donnelly JP, Huff SM, Lindsey ML, et al. The needs of children with life-limiting conditions: a healthcare-provider-based model. Am J Hosp Palliat Med. 2005;22(4):259-267.
19. Casarett D, Karlawish J, Morales K, et al. Improving the use of hospice services in nursing homes: a randomized controlled trial. JAMA. 2005;294(2):211-217.
20. Centers for Medicare and Medicaid Services. Medicare Hospice Benefits. http://www.medicare.gov/Publications/Pubs/pdf/02154.pdf. Accessed October 1, 2007.
21. American Academy of Physician Assistants. Ensuring access and continuity of care for Medicare beneficiaries who receive medical care by PAs (home health, hospice, & skilled nursing facility care). July 2007. http://www.aapa.org/gandp/factsheets/post-hospital-care.html. Accessed October 1, 2007.
22. Casey MM, Moscovice IS, Virnig BA, Durham SB. Providing hospice care in rural areas: challenges and strategies. Am J Hosp Palliat Med. 2005;22(5):363-368.