Mrs W had her provider document that she desired her daughter to be her health care proxy if she became unable to make decisions about her care.
At this patient’s practice, the primary care palliative team members were certified and experienced in providing palliative services. They completed continuing education on an ongoing basis and educated staff regularly. A primary care practice goal of theirs was to support palliative and EOL dialogue and to become actively involved in patients’ advanced care planning. The practice worked collaboratively with the front office staff, providers, and technicians and nurses to systematize and integrate this approach with all the patients. Palliative care resources and specialized community palliative teams were consulted for more challenging patients.
A palliative care checklist
Incorporating good communication skills in delivering tough news, describing palliative care, setting patient goals, and involving caregivers are essential for patient-centered care.17,18,24 Patients need to understand the expected trajectory of their serious illness and the types of advanced care planning that should be considered. The SPIKES (setting, perception, invitation or information, knowledge, empathy, summarize or strategize) acronym25 is a helpful tool for providers delivering bad news early in the course of a life-threatening illness. Primary care providers should have discussions about ADs no later than at the time of the first diagnosis of a serious illness. Alternatively, standard visits can be considered beginning at age 65 years, and many suggest having discussions with primary care patients earlier.4,8,17,18,26 Besides ADs, in various scenarios, a surrogate decision maker and out-of-hospital orders for life-sustaining treatment should be included for comprehensive information.
A checklist for incorporating a palliative approach into a primary care practice appears in Table 3. It is derived from the IOM report2 as well as current studies examining palliative care in primary practice.4,14,17,23 Besides best practices to initiate primary and follow-up appointments with patients, the checklist emphasizes the need to consider ADs with clinical decision making, and it reinforces the need for communication and collaboration with SNF coordinators, specialists, hospitalists, and EDs.14 In addition, the checklist includes an ongoing assessment of a practice’s palliative care outcome measures, such as completed consultations and patient and family satisfaction surveys.2
The best resources for information on palliative care to be used in primary care practice are listed in Table 4. Table 5 lists websites for patients. These are especially relevant for primary care providers who are building palliative care processes aimed at helping patients develop evidence-based EOL ADs.
Conclusions and future recommendations
All primary care providers (not just those treating patients with chronic illnesses or the dying) are responsible for teaching their patients about palliative care. Providers should have quality EOL discussions with their patients in a timely and ongoing manner. Doing so affords patients the necessary information, consistent good-quality management, and (when required) transitions in care (eg, transfer to hospice services). The earlier the introduction to the palliative care approach, the better.
The palliative process requires standardization and a “kick start,” particularly in primary care practices and clinics. Developing a palliative care team and incorporating EOL visits into a primary care practice provide a solid beginning. Demonstrated competency (eg, continuing education units) and/or certification in discussing ADs is certainly important and will undoubtedly become required for providers. EOL care should become part of standard medical, nursing, physician assistant, and nurse practitioner curricula,4,19,24 so that providers become comfortable and more seasoned in providing information and ongoing management.
Advanced care planning has been shown to improve patient and family satisfaction and allow care that is evidence-based, with fewer hospitalizations.2 It is essential that primary care providers address the many unmet needs of patients and families during the patients’ later years.
By initiating the palliative care dialogue, the primary care team can identify specific needs and goals, manage symptoms, coordinate care, and determine when additional resources are necessary. When incorporating EOL care into primary care, providers need to consider the process as “the beginning of a journey,” with treatment geared to provide the highest quality of life possible for the longest possible time. An interdisciplinary approach will provide a holistic focus and address comprehensive care for patients and families.18,27 Primary care providers have tremendous potential for ensuring access to and delivery of palliative care by reaching patients with all life-threatening illnesses, meeting their needs across all domains (physical, spiritual, social, and emotional), and providing care and support in a variety of primary care settings. Let the journey begin.
Joanne Stevens, PhD, FNP-BC, ARNP, is an associate professor of nursing, Megan Flanagan, FNP-BC, ARNP, is an alumna, and Tressa Pedroff, MSN, RN, is a clinical instructor at University of Tampa in Florida. Megan Flanagan, FNP-BC, ARNP, practices at Lifetime Obstetrics and Gynecology in Tampa.
- Centers for Disease Control and Prevention. The state of aging and health in America 2013. http://www.cdc.gov/features/agingandhealth/State_of_aging_and_health_in_america_2013.pdf. Published 2013. Accessed November 23, 2016.
- Institute of Medicine. Dying in America: improving quality and honoring individual preferences near the end of life. http://www.nap.edu/read/18748/chapter/1. Published 2015. Accessed November 23, 2016.
- Singer AE, Meeker D, Teno JM, Lynn J, Lunney JR, Lorenz KA. Symptom trends in the last year of life from 1998 to 2010: a cohort study. Ann Intern Med. 2015;162:175-183.
- Beyea A, Fischer J, Schenck A, Hanson L. Integrating palliative care information and hospice referral in Medicaid primary care. J Palliat Med. 2013;16:376-382.
- Morrison RS, Dietrich J, Ladwig S, et al. Palliative care consultation teams cut hospital costs for Medicaid beneficiaries. Health Aff (Millwood). 2011;30:454-463.
- Meier DE, McCormick E, Lagman R. Hospice: philosophy of care and appropriate utilization in the United States. UpToDate. https://www.uptodate.com/contents/hospice-philosophy-of-care-and-appropriate-utilization-in-the-united-states. Updated May 5, 2016. Accessed November 23, 2016.
- National Hospice and Palliative Care Organization. Key hospice messages. http://www.nhpco.org/press-room/key-hospice-messages. Accessed November 23, 2016.
- O’Neill L, Morrison R. Palliative care: issues specific to geriatric patients. UpToDate. http://www.uptodate.com/contents/palliative-care-issues-specific-to-geriatric-patients. Updated May 29, 2015. Accessed November 23, 2016.
- Head BA, La Joies S, Augustine-Smith L, et al. Increasing access to community-based palliative care for Medicaid patients. Prof Case Manage. 2010;15:206-217.
- Wachterman MW, Pilver C, Smith D, Ersek M, Lipsitz SR, Keating NL. Quality of end-of-life care provided to patients with different serious illnesses. JAMA Intern. Med. 2016;176:1095-1102.
- Khan RF, Feder S, Goldstein NE, Chaudry SI. Symptom burden among patients who were hospitalized for heart failure. JAMA Intern Med. 2015;175:1713-1715.
- Phillips J. A service versus an approach: the importance of building primary palliative care. Int J Palliat Nurs. 2014;20:471.
- Obermeyer Z, Powers BW, Makar M, Keating NL, Cutler DM. Physician characteristics strongly predict patient enrollment in hospice. Health Aff (Millwood). 2015;34:993-1000.
- Weinberg N, Stason WB. End-of-life planning in primary care practice. Consultant. 2015;55:999-1005.
- Murray SA, Firth A, Schneider N, et al. Promoting palliative care in the community: production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care. Palliat Med. 2015;29:100-111.
- Bernacki R, Hutchings M, Vick J, et al. Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention. BMJ Open. 2015;5:e009032.
- An A, Lee J, Yun Y, Heo D. Terminal cancer patients’ and their primary caregivers’ attitudes toward hospice/palliative care and their effects on actual utilization: a prospective cohort study. Palliat Med. 2014;28:976-985.
- Nettina S. Bringing palliative care to primary care. The Maryland Nurse News and Journal. 2015;February-April:17.
- Glatter R, Mirarchi F. What physicians and other healthcare providers need to know about end-of-life care. Medscape. http://www.medscape.com/viewarticle/852655. Published October 22, 2015. Accessed November 23, 2016.
- Obieglo M, Uchmanowicz I, Wieklik M, Jankowska-Polanska B, Kusmier M. The effect of acceptance of illness on the quality of life in patients with chronic heart failure. Eur J Cardiovasc Nurs. Published January 8, 2015. Accessed November 23, 2016.
- Centers for Medicare & Medicaid Services. Medicare care choices model. https://www.cms.gov/Newsroom/MediaReleaseDatabase/Fact-sheets/2014-Fact-sheets-items/2014-03-18.html. Published March 18, 2014. Accessed November 23, 2016.
- Centers for Medicare & Medicaid Services. Proposed policy, payment, and quality provisions changes to the Medicare Physician Fee Schedule for Calendar Year 2016. https://www.cms.gov/newsroom/mediareleasedatabase/fact-sheets/2015-fact-sheets-items/2015-07-08.html. Published July 8, 2015. Accessed November 23, 2016.
- Meier DE, McCormick E. Palliative care: benefits, services, and models of subspecialty palliative care. UpToDate. https://www.uptodate.com/contents/benefits-services-and-models-of-subspecialty-palliative-care. Updated November 15, 2016. Accessed November 23, 2016.
- Pelayo-Alvarez M, Perez-Hoyos S, Agra-Varela Y. Clinical effectiveness of online training in palliative care of primary care physicians. J Palliat Med. 2013;16:1188-1196.
- Ruben DB, Herr K, Pacala J, Pollock BG, Potter JF, Semia TP, eds. Geriatrics at Your Fingertips. 18th ed. New York, NY: The American Geriatrics Society; 2016.
- Peereboom K, Coyle N. Facilitating goals-of-care discussions for patients with life-limiting disease-communication strategies for nurses. J Hospice Palliat Nurs. 2012;14:251-258.
- Kelly AS, Morrison RS. Palliative care for the seriously ill. N Engl J Med. 2015;373:747-755.