FANNP 25TH NATIONAL NNP SYMPOSIUM: CLINICAL UPDATE AND REVIEW
A13 Palliative Care…When a Cure is Not Possible Terri A. Cavaliere, DNP, NNP-BC Clinical Assistant Professor Stony Brook University School of Nursing Neonatal Nurse Practitioner Cohen Children’s Hospital at North Shore, Manhasset, NY The speaker has signed a disclosure form and indicated she has no significant financial interest or relationship with the companies or the manufacturer(s) of any commercial product and/or service that will be discussed as part of this presentation.
Session Summary In today’s high-tech healthcare mileu emphasis is placed on life-saving interventions. Palliative care is frequently an afterthought when it is recognized that a cure may not be possible. It is important that neonatal nurses acquire expertise in providing palliative care. This interactive session will assist neonatal nurse practitioners in acquiring knowledge and skill to develop proficiency in this area. Emphasis will be placed on participants sharing their experiences and expertise in neonatal/perinatal palliative care.
Session Objectives Upon completion of this presentation, the participant will be able to: define palliative care; identify barriers to providing palliative care services; describe an approach to a family in need of palliative care services.
Resources & References American Academy of Pediatrics, Section on Hospice & Palliative Medicine and Committee of Hospital Care (2013). Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics, 132: 966. Balaguer, A., et al. (2012). The model of palliative care in the perinatal setting: A review of the literature. BMC Pediatrics, 12: 25. The electronic version of this article is the complete one and can be found online at: http://www.biomedcentral.com/1471-2431/12/25 Calhoun, B.C. , et al. (2003). Perinatal hospice. Comprehensive care for the family of the fetus with a lethal condition. Journal of Reproductive Medicine, 48: 343-348. Carter, B., et al. (2006). Palliative medicine in neonatal and pediatric intensive care. Child & Adolescent Psychiatric Clinics of North America, 15(3): 759 – 777. Cavinder, C. (2014). The relationship between providing neonatal palliative care and nurses’ moral distress: An integrative review. Advances in Neonatal Care, 14(5):322-327. Cortezzo, D., et al. (2013). Neonatologists’ perspectives on palliative and end-of-life care in neonatal intensive care units. Journal of Perinatology, 33(9): 184-199.
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FANNP 25TH NATIONAL NNP SYMPOSIUM: CLINICAL UPDATE AND REVIEW
Jones, B.W. (2011). The need for increased access to pediatric hospice and palliative care. Dimensions of Critical Care Nursing, 30(5): 231–235. Kang, T., et al. (2014). Integration of palliative care into the care of children with serious illness. Pediatrics in Review, 35(8): 318–325. Kobler, K., et al. (2011). Making a case: Creating a perinatal palliative care service using a perinatal bereavement program model. Journal of Perinatal & Neonatal Nursing, 25(1): 32–41. Leuthner, S. (2004). Fetal palliative care. Clinics in Perinatology, 31(7). Lindley, L.C. (2011). Health care reform and concurrent curative care for terminally ill children: A policy analysis. Journal of Hospice & Palliative Nursing, 13(8):81–88. National Association of Neonatal Nurses (2010). Palliative care for newborns [Position Paper #3051]. National Association of Neonatal Nurses [www.nann.org] Payot, A. (2009). Prenatal palliative care: A challenge of consistency between prenatal and postnatal care. Arch Pediatr 16(6): 597-599. Voyles, E. (2013). The development and outcomes of a pediatric palliative care program: A quality improvement process. Journal of Pediatric Nursing, 28(2): 196–199. Wool, C. (2013). State of the science on perinatal palliative care. Journal of Obstetric, Gynecologic & Neonatal Nursing, 42: 372–382.
Session Outline See presentation handout on the following pages.
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FANNP 25TH NATIONAL NNP SYMPOSIUM: CLINICAL UPDATE AND REVIEW
Palliative Care
Neonatal (& Fetal) Palliative Care Terri A. Cavaliere, DNP, RN, NNP‐BC FANNP © CavEnterprise 2014
• No longer restricted to provision of end‐of‐life care • Encompasses a combination of medical, psychosocial & spiritual care that enables psychosocial, & spiritual care that enables maximizing quality of life while making medical decisions based on goals and values of the family
Palliative Care • AAP [2013] policy – promote the welfare of infants & children living with life‐threatening or inevitably life‐shortening conditions; provide support to patient & family through provision of effecti e c rati e life prolonging and QOL effective curative, life prolonging and QOL enhancing care • Incorporating pediatric palliative care [PPC] into the general medical care, stressed need for interdisciplinary care teams, & preparedness of HCPs to provide basic palliative care
Palliative Care • AAP, National Quality Forum, IOM, NIH – identified palliative and EOL care as national priorities – palliative care should be a part of high quality palliative care should be a part of high quality medical care for children with advanced illness
Palliative Care • American Society Clinical Oncology [2009] suggested integration of palliative care into routine comprehensive cancer care into routine comprehensive cancer care by 2020 routine comprehensive cancer care by 2020
A13: PALLIATIVE CARE...WHEN A CURE IS NOT POSSIBLE
Barriers to PPC • • • •
Inadequate training Lack of funding Professional attitudes Lack of evidence base for PPC assessments or interventions
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FANNP 25TH NATIONAL NNP SYMPOSIUM: CLINICAL UPDATE AND REVIEW
Fairy tale #1 • Palliative Care is only for dying patients
Fairy tale #3 • PPC means we are giving up
Fairy tale #2 • There’s no evidence
Affordable Care Act • Includes Concurrent Care for Children provision • Programs for children in state Medicaid or CHIP allow hospice care in addition to curative p care for those patients under 21 years of age • Life expectance of 6 months or less if the disease follows its normal course
Limitations of CCC
NANN Position Statement
• Does not expand services available • Limited to Medicaid or CHIP • Does not provide home‐based services when prognosis falls outside of 6 months i f ll id f 6 h
• PPC offered at any period in which infant’s life may be limited‐ prenatally, at time of birth, or after birth; in initially in NICU and then at home • If prenatal diagnosis exists, PPC should be offered • Units should have printed material available that explains services and identifies team members to parents
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FANNP 25TH NATIONAL NNP SYMPOSIUM: CLINICAL UPDATE AND REVIEW
NANN Position Statement • When transport to higher level of care occurs, parents should be informed that PPC may be an option • Parents should be included in decisions Parents should be included in decisions • Support services should be available: social work, child life, family advocate, lactation specialist
NANN Position Statement • • • • •
NANN Position Statement Privacy should be maintained Strive to keep the family together Attend to alarms, pagers, telephones, lights Evaluate need for routine measurements of Evaluate need for routine measurements of vital signs and lab analyses • Monitor pain; avoid painful assessments • Discuss artificial nutrition & hydration • Bathe, dress and holding are important • • • •
NANN Position Statement • When life sustaining technology is discontinued: – There should be a plan in place in the event baby continues breathing independently continues breathing independently – Parents should decide who will be present & should be told what will happen – Vasopressors should be d/c’d; neuromuscular blockers should be removed prior to removal of respirator
A13: PALLIATIVE CARE...WHEN A CURE IS NOT POSSIBLE
Review orders for appropriateness Pain control and symptom management Comfort measures Provide support for family and for staff Relationship with outpatient services [hospice or palliative care organizations] to coordinate services and avoid unnecessary, unwanted treatment
NANN Position Statement Can infant be brought outside [?] Spiritual support is important Visiting restrictions should be waived Memory making activities should be encourages • If family is not available , staff can step in
• • • •
NANN Position Statement • When life sustaining technology is discontinued – Parent or “other” should hold baby – Medications {MS} for respiratory discomfort; O2 Medications {MS} for respiratory discomfort; O2 usually not given
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FANNP 25TH NATIONAL NNP SYMPOSIUM: CLINICAL UPDATE AND REVIEW
NANN Position Statement • Palliative care should continue after death as bereavement. • Support includes…….
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