Nursing and the future of palliative care

Nurses represent the largest group of health-care professionals in the United States of America. Currently, 3. 6 million nurses are positioned to contribute to the provision of holistic person-centered care. 1American Nurses Association. Call for Action: Nurses Lead and Transform Palliative Care; 2017Google Scholar Internationally, nurses comprise the largest group of health-care providers. Nurses are a vital resource for ensuring the provision of safe and effective care for the global population. 2International Council of Nurses The Global Nursing Shortage: Priority Areas for Intervention A Report From ICN/FNIF. Available from: http: //wwwicnch/images/stories/documents/publications/GNRI/TheGlobalNursingShortage-PriorityAreasforInterventionpdfDate: 2006Date accessed: July, 2017Google Scholar Nurses spend more time with patients and families than any other health professional as they face serious illness. 3End of Life Nursing Education Consortium (ELNEC) Fact Sheet. Available from: http: //wwwaacnncheedu/elnec/about/fact-sheetDate: 2017Date accessed: July, 2017Google Scholar Expert nursing care reduces the distress and burdens of those facing death, and the ability to offer support for unique physical, social, psychological, and spiritual needs of the patients and their families. 3End of Life Nursing Education Consortium (ELNEC) Fact Sheet. Available from: http: //wwwaacnncheedu/elnec/about/fact-sheetDate: 2017Date accessed: July, 2017Google Scholar Collectively, nurses have demonstrated a commitment to palliative care, with some nurses showing even greater initiative in the treatment of end-of-life patients. A 2016 systematic review of palliative care health services found more support for the role of nurses than any other discipline. Of the 98/124 studies that described provider disciplines, nurses were the most common interventionists working in teams or as sole practitioners in 70% of studies. 4Singer AE, Goebel JR, Kim YS, Dy SM, Ahluwalia SC, Clifford M, et al. Populations and interventions for palliative and end-of-life care: A systematic review. J Palliat Med 995–1008. Google Scholar, 5Lorenz KA, Lynn J, Dy SM, Shugarman LR, Wilkinson A, Mularski RA, et al. Evidence for improving palliative care at the end of life: A systematic review. Ann Intern Med 147–59. Google Scholar Palliative care refers to the optimization of quality of life for both the patients with serious illness and their families using special measures to anticipate, treat, and prevent suffering. This care encompasses the continuum of illnesses including physical, psychosocial, emotional, and spiritual needs of seriously ill patients. 6National Hospice and Palliative Care Organization Explanation of Palliative Care. Available from: http: //wwwnhpcoorg/palliative-care-0Date: 2015Date accessed: July, 2017Google Scholar The Institute of Medicine notes a responsibility to ensure that end of life care is compassionate, affordable, sustainable, and of the best quality possible. 6National Hospice and Palliative Care Organization Explanation of Palliative Care. Available from: http: //wwwnhpcoorg/palliative-care-0Date: 2015Date accessed: July, 2017Google Scholar Failure to provide holistic care limits the effectiveness of palliative care and can contribute to physical, social, spiritual, and/or emotional suffering. 3End of Life Nursing Education Consortium (ELNEC) Fact Sheet. Available from: http: //wwwaacnncheedu/elnec/about/fact-sheetDate: 2017Date accessed: July, 2017Google Scholar, 7Becker R. Palliative care 2: Exploring the skills that nurses need to deliver high-quality care. Nurs Times 18–20. Google Scholar, 8American Association of Colleges of Nursing ELNEC Fact Sheet. Available from: http: //wwwaacnncheedu/elnec/about/fact-sheetDate: 2017Date accessed: July, 2017Google Scholar Palliative care can be provided concurrently with curative measures. 6National Hospice and Palliative Care Organization Explanation of Palliative Care. Available from: http: //wwwnhpcoorg/palliative-care-0Date: 2015Date accessed: July, 2017Google Scholar Concurrent care is different than a traditional hospice model, where curative therapy, or life extending measures such as palliative chemotherapy, generally have ceased. The concurrent model of palliative care may be, particularly important in lower and lower middle-income countries where access to curative care is limited. Like geriatrics and hospice, palliative care generally will use a multidisciplinary team that may be made up of nursing, social work, spiritual care, and medicine to meet the multifaceted needs of patients with serious illness, or who are at the end of life. 4Singer AE, Goebel JR, Kim YS, Dy SM, Ahluwalia SC, Clifford M, et al. Populations and interventions for palliative and end-of-life care: A systematic review. J Palliat Med 995–1008. Google Scholar The evidence supports that nurses work in a variety of roles. These include as being members of a multidisciplinary consultation team, as individual practitioners in targeted pain and symptom management, or as case managers. 4Singer AE, Goebel JR, Kim YS, Dy SM, Ahluwalia SC, Clifford M, et al. Populations and interventions for palliative and end-of-life care: A systematic review. J Palliat Med 995–1008. Google Scholar, 6National Hospice and Palliative Care Organization Explanation of Palliative Care. Available from: http: //wwwnhpcoorg/palliative-care-0Date: 2015Date accessed: July, 2017Google Scholar, 9Bakitas M, Lyons KD, Hegel MT, Balan S, Brokaw FC, Seville J, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: The Project ENABLE II randomized controlled trial. JAMA 741–9. Google Scholar, 10Bakitas MA, Tosteson TD, Li Z, Lyons KD, Hull JG, Li Z, et al. Early Versus Delayed Initiation of Concurrent Palliative Oncology Care: Patient Outcomes in the ENABLE III Randomized Controlled Trial. J Clin Oncol 1438–45. Google Scholar A registered nurses (RN) educates, give advice, and provides emotional support to patients and their family members. Other duties include physical assessments, health histories, health promotion, counseling, education, medication and treatment administration, wound care, and numerous other personalized interventions. RN's consult and collaborate with a multidisciplinary team and contribute to the plan of care. RN can supervise care delivery by other medical personnel like nurse aides as well as conduct research in support of improved practice and patient outcomes. Advanced Practice RN (APRN's) can provide excellent service to those suffering from serious life-limiting illnesses. The educational preparation of APRNs allows a “greater depth and breadth of knowledge and ability to synthesize complex data to develop, implement, and coordinate comprehensive, holistic patient-centered plans of care with goals of maximizing health, quality of life, and functional capacity. ” 11Hospice and Palliative Nurses Association (HPNA) HPNA Position Statement Value of the Advanced Practice Registered Nurse in Palliative Care. Available from http: //wwwhpnaadvancingexpertcareorg/wp-content/uploads/2014/09/ValueₒfAPRNᵢnPalliativeCare₂010pdfDate: 2010Date accessed: July, 2017Google Scholar Depending on state licensure, APRN's may have the ability to practice, furnish medications, and bill independently. Palliative care nursing involves the assessment, diagnosis, and treatment of human responses to actual or potentially life-limiting illness and necessitates a dynamic, caring relationship with the patient and family to reduce suffering. Therefore, palliative nursing is a subspecialty of nursing practice that continues to evolve as the art and science of nursing, and palliative care evolves. 12Bradley EH, Cherlin E, McCorkle R, Fried TR, Kasl SV, Cicchetti DV, et al. Nurses' use of palliative care practices in the acute care setting. J Prof Nurs 14–22. Google Scholar Palliative care nurses work in varied settings including patients' homes, residential hospices, clinics, long-term and skilled care facilities, and acute in-patient facilities. 6National Hospice and Palliative Care Organization Explanation of Palliative Care. Available from: http: //wwwnhpcoorg/palliative-care-0Date: 2015Date accessed: July, 2017Google Scholar Palliative care should adapt accordingly to meet the physical, emotional, social, and spiritual needs of the patient and their families. 11Hospice and Palliative Nurses Association (HPNA) HPNA Position Statement Value of the Advanced Practice Registered Nurse in Palliative Care. Available from http: //wwwhpnaadvancingexpertcareorg/wp-content/uploads/2014/09/ValueₒfAPRNᵢnPalliativeCare₂010pdfDate: 2010Date accessed: July, 2017Google Scholar Palliative care nurses may be hospice nurses, an advanced practice nurse (APN) with a master's degree or higher, or an acute care RN with additional training. Currently, no standard education for a “palliative care” nurse exists, commitment to caring for a patient with a serious illness is a must. A palliative care nurse could have a wide variety of education, training, and clinical experience. Palliative care nurses have adjusted their frame of mind from one which revolves around specific tasks such as vital signs, treatments, and interventions, to one of comfort, symptom management, and support. 13Peters L, Cant R, Sellick K, O'Connor M, Lee S, Burney S, et al. Is work stress in palliative care nurses a cause for concern. A literature review. Int J Palliat Nurs 561–7. Google Scholar Many nurses involved in palliative care face the challenge of combining the art of caring and the science of medicine into a cohesive model that reflects compassionate, individualized care regardless of the environment. 7Becker R. Palliative care 2: Exploring the skills that nurses need to deliver high-quality care. Nurs Times 18–20. Google Scholar Palliative care nursing demands intense critical thinking, heightened levels of mental functioning, and the ability to utilize complex palliative nursing skills. 14DiTullio M, MacDonald D. The struggle for the soul of hospice: Stress, coping, and change among hospice workers. Am J Hosp Palliat Care 641–55. Google Scholar Palliative care nurses are repeatedly confronted with patients and families who encounter serious end-of-life illness and death. 14DiTullio M, MacDonald D. The struggle for the soul of hospice: Stress, coping, and change among hospice workers. Am J Hosp Palliat Care 641–55. Google Scholar, 15Fillion L Saint-Laurent L Stressors Linked to Palliative Care Nursing: The Importance of Organizational, Professional and Emotional Support Canadian Health Services Research Foundation. Available from: “http: //wwwresearchgatenetDate: 2003Date accessed: December, 2016Google Scholar These situations are further complicated by complex social situations, difficult diagnoses, challenging symptom management, and challenging communication concerning patient death and grief. 12Bradley EH, Cherlin E, McCorkle R, Fried TR, Kasl SV, Cicchetti DV, et al. Nurses' use of palliative care practices in the acute care setting. J Prof Nurs 14–22. Google Scholar, 13Peters L, Cant R, Sellick K, O'Connor M, Lee S, Burney S, et al. Is work stress in palliative care nurses a cause for concern. A literature review. Int J Palliat Nurs 561–7. Google Scholar, 14DiTullio M, MacDonald D. The struggle for the soul of hospice: Stress, coping, and change among hospice workers. Am J Hosp Palliat Care 641–55. Google Scholar, 15Fillion L Saint-Laurent L Stressors Linked to Palliative Care Nursing: The Importance of Organizational, Professional and Emotional Support Canadian Health Services Research Foundation. Available from: “http: //wwwresearchgatenetDate: 2003Date accessed: December, 2016Google Scholar, 16Pereira SM, Fonseca AM, Carvalho AS. Burnout in palliative care: A systematic review. Nurs Ethics 317–26. Google Scholar The ability to effectively communicate with patients and families is an important skill for any palliative care nurse. Palliative care nurses must have the ability to explain complex information, as patients are often seeking clarity on disease progression, medications, and plan of care. Palliative care nurses must be able to communicate this information to both the patient and family. It is within the nursing scope of practice to thoroughly explain and educate patients and families on symptoms and treatments through the end of life, including medication regimens. Merriam-Webster 17Compassion Merriam-Webster. Available from: http: //www. Merriam-WebstercomDate: 27 June, 2017Date accessed: July, 2017Google Scholar defines compassion as “sympathetic consciousness of others' distress together with a desire to alleviate it. ” Compassion for self can help to prevent burnout, while compassion for patients and families helps to establish a supportive, trusting relationship as symptoms change or worsen or as death approaches. Although the time of on-going disease progression and at the end of life can be distressful, it can also be a time of togetherness for patients and their loved ones. The palliative care nurse has a window into some of the most intimate moments in a person's life. Patients and families tend to remember the nursing response to their needs, which, through communication, presence, symptom management, and other work within their multidisciplinary team, allows nurses to leave a legacy through care. The generalist nurse has the necessary skills and knowledge to care for dying patients, as well as those with chronic, serious illness; this includes a basic ability to provide relief from pain in addition to symptom assessment and management. The palliative care RN and APRN specialist has expert knowledge in palliative care, including the pathophysiology of diseases, advanced pain and symptom assessment and management, counseling and communication skills, and advanced care planning. They also have advanced knowledge about caring for individuals with serious, life-threatening illness, as well as those who are imminently dying. 18American Nurses' Association (ANA) Position Statement: Registered Nurses' Roles and Responsibilities in Providing Expert Care and Counseling at the End of Life. Available from: http: //wwwnursingworldorg/MainMenuCategories/Policy-Advocacy/Positions-and-Resolutions/ANAPositionStatements/Archives/etpain14426pdfDate: 2010Date accessed: July, 2017Google Scholar Although palliative care is useful for a variety of conditions, and much of the high-quality research completed is not unique to medical conditions, the evidence base is strongest for cancer. 4Singer AE, Goebel JR, Kim YS, Dy SM, Ahluwalia SC, Clifford M, et al. Populations and interventions for palliative and end-of-life care: A systematic review. J Palliat Med 995–1008. Google Scholar Early palliative care is particularly beneficial with two recent randomized controlled trials showing that palliative care improves the quality of life of patients with lung cancer and also when they are receiving bone marrow transplant. 8American Association of Colleges of Nursing ELNEC Fact Sheet. Available from: http: //wwwaacnncheedu/elnec/about/fact-sheetDate: 2017Date accessed: July, 2017Google Scholar, 19El-Jawahri A, LeBlanc T, VanDusen H, Traeger L, Greer JA, Pirl WF, et al. Effect of Inpatient Palliative Care on Quality of Life 2 Weeks After Hematopoietic Stem Cell Transplantation: A Randomized Clinical Trial. JAMA 2094–2103. Google Scholar, 20Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 733–42. Google Scholar Oncology nurses in palliative care will bridge the gap of continuity as they deliver physical and psychosocial care throughout treatment and beyond. Oncology nurses are in a unique position to advocate and address many ethical and legal aspects of care as well as ensure the patient receives palliative care as the patient progresses through illness from curative to palliative treatments. In March of 2017 the American Nurses Association and Hospice and Palliative Nurses Association (HPNA) presented a call to action for nurses to lead and transform palliative care. One of the nursing recommendations included the adoption of End of Life Nursing Education Consortium (ELNEC) curricula (Core, Geriatric, Critical Care, Pediatric, APRN and Online for Undergraduate Nursing Students) as the standard for primary palliative nursing education. ELNEC has also provided education in 90 countries including Japan, Korea, China, Eastern Europe, as well as Kenya. ELNEC has been translated into Spanish, Japanese, Korean, Chinese, Russian, Romanian, Albanian, and German. 8American Association of Colleges of Nursing ELNEC Fact Sheet. Available from: http: //wwwaacnncheedu/elnec/about/fact-sheetDate: 2017Date accessed: July, 2017Google Scholar There are many educational offerings available for palliative care nurses to improve their knowledge base in palliative and end of life care. Other offerings range from 1 day, simple classes to long, and certifications programs. Certification in Palliative care is offered by the HPNA for Nurse Aides, licensed practical nurse/licensed vocational nurse, RN and APN levels. Colleges offer online and classroom options for certificate programs in palliative nursing. Alternative education including fellowship programs, leadership programs, conferences, and ELNEC courses are also offered. Of note, for international providers, Stanford offers an online resource, Palliative Care Always (https: //lagunita. stanford. edu/courses/Medicine/pcₐlways/Winter2016/about), which is offered annually and has been used by thousands of participants to gain a fundamental knowledge base about the practice of palliative care. The highest quality evidence for nurses as independent practitioners has been described in the Education Nurture Advise before Life Ends (ENABLE) studies. The ENABLE intervention included a series of 4 weekly sessions followed by at least monthly follow-up with patients and caregivers until death. Sessions focused broadly on the quality of life relevant issues, communication, and involved pro-active assessment and prevention. ENABLE II showed benefits in quality of life and depression in patients, and the intervention did not directly benefit caregivers. ENABLE III evaluated early versus later nurse intervention; earlier intervention was associated with improved mortality with 63% of patients getting early compared to 48% of patients receiving late palliative care surviving to 1 year. 5Lorenz KA, Lynn J, Dy SM, Shugarman LR, Wilkinson A, Mularski RA, et al. Evidence for improving palliative care at the end of life: A systematic review. Ann Intern Med 147–59. Google Scholar, 9Bakitas M, Lyons KD, Hegel MT, Balan S, Brokaw FC, Seville J, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: The Project ENABLE II randomized controlled trial. JAMA 741–9. Google Scholar, 10Bakitas MA, Tosteson TD, Li Z, Lyons KD, Hull JG, Li Z, et al. Early Versus Delayed Initiation of Concurrent Palliative Oncology Care: Patient Outcomes in the ENABLE III Randomized Controlled Trial. J Clin Oncol 1438–45. Google Scholar The APRN provides on-going assessment and intervention so he/she can educate and guide the patient and family on a realistic understanding of the disease processes. Not only does this build a trusting relationship with the patient and family but also promotes safe transitions and autonomy, as it allows the patient and family to be an active part of developing a plan of care. 3End of Life Nursing Education Consortium (ELNEC) Fact Sheet. Available from: http: //wwwaacnncheedu/elnec/about/fact-sheetDate: 2017Date accessed: July, 2017Google Scholar, 7Becker R. Palliative care 2: Exploring the skills that nurses need to deliver high-quality care. Nurs Times 18–20. Google Scholar, 11Hospice and Palliative Nurses Association (HPNA) HPNA Position Statement Value of the Advanced Practice Registered Nurse in Palliative Care. Available from http: //wwwhpnaadvancingexpertcareorg/wp-content/uploads/2014/09/ValueₒfAPRNᵢnPalliativeCare₂010pdfDate: 2010Date accessed: July, 2017Google Scholar Conventionally, medical care has focused on cure-oriented care in an acute care setting based on episodic illnesses. However, people have begun to live longer with increasingly complex chronic illness making this type of care insufficient. The service areas should communicate, coordinate, and work together to care for the person as they promote the goals and wishes of the person. Care transitions are not only from the hospital to home. Transitions also exist in the type of care which is being delivered to the patient. Points of transition in care include a mix of palliative, cure-oriented or life-prolonging care, a transition to palliative care only, or change to the end of life care. For patients with longstanding serious chronic illness prognostic uncertainty makes the transition to alternate levels of care difficult. With these multiple transitions nurses must be able to work amidst the transitions and in a multitude of settings. facing serious and end of life illness to be in their and Palliative care in the setting as care of the on palliative care through delivery such as care and hospice, as well as with service and individual The is to a person's life at or of by maximizing the quality of life, and care that supports their goals and In nurses may a role in and care in the and by working with health workers. Palliative care nurses can offer consultation in the setting. This includes some of the care symptom management, and end of life care. of where palliative care can be are a or more or patients in areas an available palliative care that utilize nurses, and social to the person's of social and care A nursing palliative care team may primary care or may care with other providers. A palliative care can provide an excellent to coordinate care, acute care reduce hospital and care for those with serious chronic illness in need of chronic disease management. also as is a developing of clinical medicine by which medical information is the or other for health education, and medical or can and patients in clinical settings as well as directly with patients in their Although have been no studies of the use of for the delivery of palliative care, studies of patients with chronic such as chronic disease and that may reduce of and reduce hospital of improve clinical and There are in the evidence base where is used and where high-quality evidence supports allows in palliative medicine to use and/or with the of the patient and provider at the The provides a communication that allows a to Nurses in palliative care, and the evidence supports nurses on palliative care consultation teams or as independent Nurses can be active at focused tasks pain or in case patients and families with cancer have a of needs that nurses can a critical role in Evidence independent practice is important in lower settings where nurses also may a role health and or