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research-article2013
NSQXXX10.1177/0894318413509717Nursing Science QuarterlyDuBois and Reed
Health and Public Policy
The Nurse Practitioner and Policy in End-of-Life Care
Nursing Science Quarterly 2014, Vol 27(1) 70–76 © The Author(s) 2013 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0894318413509717 nsq.sagepub.com
Janet C. DuBois, RN; DNP1 and Pamela G. Reed, RN; PhD; FAAN2
Abstract The focus of this column is the interface between policy and end-of-life care, particularly as provided by advanced nurse practitioners. The complexities of end-of-life along with barriers in practice can diminish quality of life for patients and their families. Changes in policy are needed to enable nurse practitioners their full scope of practice in a way that benefits patients and families at end-of-life. Three areas particularly relevant to policy for nursing practitioners and end-of-life care are addressed: scope of practice, reimbursement, and prescribing practices. Other recommendations for policy and end-of-life care are discussed. Keywords advanced practice, end-of-life, health policy, nurse practitioner, palliative care
The adequacy of end-of-life care is an increasing concern in society and among healthcare professionals. There continues to be critical need for policy that promotes and supports nurses’ use of knowledge, experiences, and skills in caring for patients at end-of life. This column addresses three key areas of needed change in policy for end-of-life nursing care: scope of practice, reimbursement, and prescribing practices. In addition, background on the significance of this area of care is briefly reviewed, and barriers to advanced nursing practice are discussed. The authors conclude with policy recommendations for the future of end-of-life nursing care.
End-of-Life Care as Quality of Life Care Palliative care is integral to caring for someone at end-oflife. While the literature suggested that there are differences in the exact meaning or definition of the term palliative care, most experts and professional organizations agree that the goal of palliative care is to provide care to patients and their families and prevent or relieve the suffering of those who have a life-limiting illness, regardless of the stage of the disease or available treatment options. This broad description of palliative care encompasses the concepts of hospice and endof-life care, which are more specific in terms of the stages and treatment options available for patients enrolled in those services (Currow, Wheeler, Glare, Kaasa, & Abernethy, 2009; Hospice and Palliative Care Nurses Association [HPNA], 2010). Palliative care is about quality of life and extends beyond but includes a focus on pain and symptom management. Medicare defines hospice care as a “program of care and support for people who are terminally ill” (U.S. Department
of Health and Human Services [USDHHS], 2013, pg. 4). In addition, there are other factors that help define the services and care involved with the hospice program including focusing on patient comfort rather than on experimenting with aggressive treatments to cure disease. Hospice philosophy promotes holistic care by a team of trained professionals who address emotional, spiritual, social, and physical needs. Services provided by hospice include an array of components in addition to the physical care of patients such as counseling, medical equipment, and necessary supplies. Hospice services are generally provided in the home for any patient with a terminal illness. Family and caregiver support during bereavement is also part of the services that hospice provides (USDHHS, 2013).
Historical Views on Policy Over 15-years ago, the Institute of Medicine (IOM, 1997) issued a major report recommending specific policies for end-of-life care – a report that is as relevant today as it was then. This report was the work of a 12-member committee who conducted an extensive study to determine how care for terminally ill and dying patients in America could be improved. The committee found that society focuses more on cure of disease than quality of life in the dying population 1
Assistant Clinical Professor, The University of Arizona Professor, The University of Arizona
2
Contributing Editor: Pamela G. Reed, RN, PhD, FAAN, Professor, University of Arizona College of Nursing, 1305 N. Martin St., Tucson, AZ 85721-0203 Email: [email protected]
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DuBois and Reed and healthcare systems, and that organizations and providers lack adequate education to develop the attitudes, skills, and knowledge for providing appropriate end-of-life care to people. This imbalance in the American healthcare culture has resulted in a lower quality of life for terminally-and chronicallyill patients whose disease state is progressive and incurable. The results of the study suggested that the American healthcare system tended to over-treat patients who were terminally ill and failed to support them adequately through the process of dying, especially in terms of relieving suffering and pain. In light of these findings, the IOM (1997) committee listed a spectrum of behaviors and strategies relevant to developing policy on quality end-of-life care: 1. Focus end-of-life care on support and symptom management 2. Commit to relieving suffering and pain 3. Implement system changes to provide financing 4. Reform controlled substances laws 5. Incorporate end-of-life care in educational programs and create specialty programs for interested providers 6. Increase the use of evidenced based knowledge in care 7. Increase research in the field of end-of-life care Since this IOM report, research findings have continued to support hospice and other end-of-life care as significantly increasing quality of life for the individuals and families. As one example, the findings from multiple studies reported in a systematic review of literature demonstrated a significant increase in quality of life by hospice patients as compared with non-hospice patients (Candy, Holman, Leurent, Davis, & Jones, 2011). Hospitalizations for hospice patients were lower and there were fewer inpatient days than for non-hospice patients. In addition, patients and families reported a greater level of satisfaction with their healthcare team, associated healthcare costs were lower, and pain control was better. Palliative care, more broadly, avoids inappropriate medical interventions and associated distress from these treatments, facilitates communication regarding decisions, increases access to homecare services, and provides for emotional and spiritual support of the individual and family. Nevertheless, barriers to adequate end-of-life care prevail in society.
Barriers to Quality End-of-Life Care Barriers to adequate end-of-life care exist across the trajectory of life-limiting illness from diagnosis to long-term and hospital-based care. These barriers signify areas of needed policy development or change in order to promote quality of life at the end-of- life. Some barriers are related to shortages of nurses who are knowledgeable or interested in end-of-life practice. Other barriers – particularly regulatory barriers – may be linked to underlying philosophies of healthcare among providers and institutions.
In reference to the beginning of the disease trajectory, patients should be, but often are not, introduced to the concept of palliative care early in the disease process. Diagnosis and explanation of likely symptoms of the disease mark an opportunity for introducing the idea of palliative care. Discussion of treatment with its potential side effects and symptoms is another time for discussing how palliative care can benefit individuals (Ferrel, Paice, & Koczywas, 2008). Regarding hospital care, according to Lupu (2010), the American Academy of Hospice and Palliative Medicine Work Force Task determined that there is a shortage of hospital-based hospice and palliative care providers. Nurse practitioners are frequently utilized in hospital-based hospice team care, but there is still a shortage of physicians and nurses capable of providing expert care. The task force estimates that a shortage of approximately 14,000 to 18,000 hospice and palliative care providers will exist in the near future. Moreover, if hospital philosophy of care is oriented toward treatment at all costs, there is less support for and recognition of the need for palliative care personnel and services. In terms of long-term care, end-of-life or palliative care can be provided in the nursing home as differentiated from hospice care, in that palliative care is not dependent on timing (no required estimated six month end-of-life timeframe) or reimbursement. Palliative care focuses on management of symptoms and may also include life- prolonging treatment to improve quality of life. Based on current research findings, it is estimated that as many as 80 percent of nursing home patients would benefit from palliative care services (Carlson, Lim & Meier, 2011), but these services are rare in longterm care settings. Approximately 20 percent of the care given in nursing homes is provided by nurse practitioners. The authors cited multiple studies on the effectiveness of nurse practitioner care in the nursing home setting, including decreased hospitalization, decreased loss of function, increased patient satisfaction, and a decrease in patient mortality (Philpot, Tolson & Morle, 2011). But a principle barrier to palliative care in the nursing home setting is the lack of trained and qualified palliative care providers (Carlson, Lim & Meier, 2011; DiSantostefano, 2011). In addition, there are three significant regulatory barriers to delivering timely and needed palliative care to nursing home patients (Carlson, Lim & Meier, 2011). The first is recognition of restorative but not palliative care in quality of care standards; the Resident Assessment Instrument (RAI), used in nursing homes to provide quality of care data on improvement for reimbursement does not account for palliative care aimed toward symptom management. This discourages nursing homes from providing palliative care because palliative care is considered to be a lower quality of care, which likely receives a lower level of reimbursement. The second regulatory barrier is that nursing homes receive a higher level of reimbursement when a patient is discharged back to the nursing home from an inpatient-hospital setting.
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Obviously this may result in an increased incentive to send nursing home patients to the hospital instead of treating them as palliative patients in the nursing home (Carlson, Lim & Meier, 2011). The third regulatory barrier is that Medicare does not pay for room and board of a nursing home patient enrolled in hospice while they have skilled nursing home benefits remaining; patients are forced to choose between the hospice benefit and Medicare coverage. If patients choose hospice, they are either forced to leave the nursing home or required to pay out of pocket for the room and board charges in the nursing home until all their skilled nursing benefits with Medicare are exhausted. This disincentive most often results in the patient declining hospice services that would enhance quality of life during their last months of life.
Barriers in Pain Management Pain and other inadequately treated symptoms at end-of-life have far-reaching consequences for quality of life. Consequences of untreated pain include depression, decreased mobility, changes in cognition, and poor self-perception of health. Pain is especially prevalent in the last four months preceding death and providing sedating medications to patients has been shown to reduce symptoms of unrelieved pain such as delirium and dyspnea (Denny & Guido, 2012; Wilkie & Ezenwa, 2012). The highest risk group for undertreated pain is older adults above the age of 70. Elderly patients experience pain more frequently than other populations. As many as 50 percent of community-dwelling older adults experience pain that interferes with their daily activities and approximately 50 percent of all nursing home patients report experiencing pain on a daily basis. Cognitive changes in the elderly or terminally-ill patients often make it difficult to assess the true level of pain the patient is experiencing. Additionally, negative attitudes of family and providers toward narcotic analgesics frequently adds to the under treatment of pain. These perceived negative consequences of narcotic use include both provider and patient fear of addiction and loss of cognitive and physical function (Aziz, Miller & Curtis, 2012; IOM, 1997; Reid et al., 2011; Wilkie & Ezenwa, 2012). The National Institute of Nursing Research (NINR) discussed the issues surrounding palliative and end-of-life care at their 2011 summit on The Science of Compassion: Future Directions in End-of-Life and Palliative Care. One of the key domains identified at the Summit for future research was pain and symptom management. The National Institutes of Health (NIH) 2010 Pain Consortium made several recommendations for research needed to close the gaps in pain management knowledge in the following areas: opiate pharmacology, prescribing, addiction, discontinuation, and safety and effectiveness, as well as non-pharmacologic methods of pain management, over-the-counter therapies,
and attitudes and beliefs among patients, family members, and providers about pain management (Reid, et al., 2011). Increased knowledge in these areas could be used to inform better policies on pain management. Three policy-relevant areas were identified among the multiple systems’ barriers to adequate pain management and end-of-life care at the NINR 2011 Science of Compassion summit. These were the following: lack of access to care, reimbursement, and regulatory restrictions for some treatment modalities (Aziz, Miller, & Curtis, 2012).
Scope of Practice Barriers Scope-of-practice issues for nurse practitioners exist on both the federal and state levels. Many of the regulatory and statutory scope of practice issues are not federally legislated but are based on individual state regulations. States regulate nurse practitioners’ scope of practice and determine what services nurse practitioners can offer, the level of autonomy nurse practitioners have (independent, collaborative, supervisory) and they provide the statutory and regulatory guidance through their nurse practice acts. Unfortunately, states do not base their nurse practice acts primarily on safety or quality data but instead nursing practice acts are arbitrarily enacted by state legislators and boards of nursing and medicine, creating unnecessary barriers to practice. Practice requirements vary from state to state in reference to prescribing privileges, physician supervision or collaboration requirements, chart reviews, physician availability (either in distance or by contact), and ability to order other professional services. Credentialing for licensure is also determined by each state although all states now require national certification for licensure as a nurse practitioner (Fairman, Rowe & Hassmiller, 2011; National Institute for Healthcare Reform [NIHR], 2013). Other impediments include lack of ability to prescribe controlled substances, inability to perform worker’s compensation physicals or certify disability, inability to sign and certify a death certificate, inability to admit patients to psychiatric facilities, and lack of legislation to empanel nurse practitioners as Medicaid primary care providers (Center to Champion Nursing in America, AARP Public Policy Institute [CCNA] (2010); Fairman, Rowe & Hassmiller, 2011; NIHR, 2013). Federal scope of practice issues include inability to certify patients for Medicare home health services or hospice, order durable medical equipment, admit patients to skilled nursing facilities, and provide services under the Federal Employee’s Compensation Act. The inability to admit or certify patients for home health and hospice services has a direct impact on the ability of the nurse practitioner to provide direct services to patients at the end-of-life or those who have life-limiting illnesses. Because of these regulations, physicians are needed to initiate or certify these services, often requiring a duplication of services, additional visits or time spent with another
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DuBois and Reed provider, which inevitably result in a delay in initiating services or therapy. This results in an additional burden to both the patient and the healthcare system, and may increase the cost of care (American Association of Nurse Practitioners [AANP], 2012a, 2012b; NIHR, 2013; USDHHS, 2013).
Reimbursement Barriers The need for hospice services and for specialists in palliative care will undoubtedly increase in the near future. Major barriers to sustaining a nurse practitioner model of care at endof life are lack of reimbursement from Medicare/Medicaid managed care plans, inequity in nurse practitioner reimbursement from Medicare as compared with physician reimbursement (nurses receive 85% of the covered physician fees for the same services), and the limited ability of nurse practitioners to obtain new referrals due to the requirement that a physician must see the patient first. Bookbinder and colleagues (2011) found that the collection rate of fees in their study was only 50 percent, further reducing nurses’ reimbursement. Nurse practitioners working directly for the hospital were unable to generate enough revenue to sustain the project because they cannot bill a separate charge for palliative care or hospice services, which are bundled into the hospitals nursing services under the appropriate DRG (Bookbinder et al., 2011; Meier & Beresford, 2006). However, nurse practitioners salaried by a private physician group may bill for their hospital services through the physician. To receive reimbursement directly, the nurses must be listed as the patient’s attending provider. Many nurses (as well as physicians) are uncertain or reluctant to bill for the correct level of services provided for fear of upcoding (the practice of using higher procedure codes than codes of services actually rendered in order to receive higher reimbursement from Medicare) and its subsequent penalties if proven, further reducing reimbursement for appropriate services provided to the patient. Since Medicaid services are administered on a state level, reimbursement guidelines can differ from state to state, further impeding adequate reimbursement for nurse practitioners who provide palliative and hospice services to this population. In addition, third party payers may have reimbursement policies that vary from state to state (Journal of Wound, Ostomy & Continence Nursing 2012; Meier & Beresford, 2006). Reimbursement for children’s palliative or hospice care can be even more challenging. Because it is more difficult to predict the life expectancy of children with life-ending diseases, Medicaid often declines to pay for such services. Only about 20 percent of children who qualify for hospice services actually receive these services due to barriers in reimbursement not only from Medicaid, but from third party payers as well because their payment structure for these benefits is geared toward adults. Additionally, parents are extremely reluctant to sign a waiver for further treatment of their
terminally-ill child even if the physician is willing to certify that they are within six months of death (Klein, 2009).
Prescribing Controlled Substance Barriers Since pain control and relief is fundamental to end-of-life and palliative care (Aziz, Miller, & Curtis, 2012; Denny & Guido, 2012; IOM, 1997; Wilkie & Ezenwa, 2012), the barriers with the inability of nurse practitioners to prescribe controlled substances influences their ability to provide an adequate level of care to their patients. It also may create additional costs and less effective use of resources when the nurses must contact or send their patients to a physician to receive adequate pain relief (National Institute for Health Care Reform [NIHCR], 2013; Robert Wood Johnson Foundation, 2013). Nurse practitioners in all states except Florida have the ability to prescribe controlled substances (CS), although the specifics of what and how much they can prescribe vary from state to state. Alabama, one of the last holdouts, recently passed legislation allowing nurse practitioners to prescribe controlled substances III through V. (Most of the drugs found in CS II through V are narcotic analgesics such as codeine, hydrocodone, oxycodone, and morphine-type drugs.) All states except Florida allow some level of controlled substance prescribing but many include restrictions such as, requiring physician protocols or written approval delineating the amount and type of controlled substance the nurse practitioner is allowed to prescribe. Seven states allow nurse practitioners to prescribe only III through V level drugs and one state allows only IV through V levels (Phillips, 2013).
Policy-Relevant Recommendations Many organizations have recommended policy changes that would allow nurse practitioners to practice to their full scope of practice. Perhaps the most powerful of these recommendations came from The Institute of Medicine (2010) in its report “The Future of Nursing: Leading Change, Advancing Health”. The IOM established this two-year initiative to develop recommendations and a blueprint on how nursing can meet some of the nation’s new challenges resulting in part from the passing of the Affordable Care Act (ACA). The ad hoc committee (IOM, 2010) assigned to the initiative developed four key messages: 1. Nurses should practice to the full extent of their education and training. 2. Nurses should achieve higher levels of education and training through an improved education system that promotes seamless academic progression. 3. Nurses should be full partners, with physicians and other health profession in redesigning health care in the United States.
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4. Effective workforce planning and policy making require better data collection and an improved information infrastructure. (p. 29) The IOM report (2010) does not make specific recommendations but instead broadly states that nurses, including advanced registered nurse practitioners, should practice to the full scope of their practice. Three specific areas that should be targeted for policy change to facilitate more adequate end-of-life care by nurse practitioners are scope of practice, reimbursement, and prescriptive authority.
Scope of Practice According to NIHCR (2013), a recent recommendation by the National Governors Association is to facilitate nurse practitioner autonomy by liberalizing state scope of practice regulations and laws. Other reports indicate support for the liberalization of state scope of practice laws and agreement that removing these barriers to nurse practitioner care would result in greater access for patients to high quality, cost effective care (CCNA, 2010; Fairman et al., 2011; NIHCR, 2013; Phillips, 2010). The AANP (2012) has published several position papers recommending complete, autonomous practice for nurse practitioners through legislative changes in scope of practice at both the state and federal levels. Along with this, is the specific recommendation to change the language in federal legislation, laws, and regulations to the use of non-specific provider terms. By eliminating the terms physician and medical doctor and substituting provider into many Medicare regulations, nurse practitioners would be able to provide direct services to patients without having to obtain physician certification or initiation for services such as hospice, home health, ordering durable medical equipment, and providing care to federal employees, again increasing access to better care for more Americans and decreasing costs (AANP, 2012; Fairman, 2011; NIHCR, 2013).
Reimbursement Reimbursement for palliative care in general needs to occur to ensure that end-of-life patients receive the highest quality care possible (Bookbinder et al., 2011; HPNA, 2010; Tilden & Thompson, 2009). Current Medicare policy incentivizes nursing homes and hospitals to provide unnecessary services and hospitalizations and disincentivizes’ palliative care services delivered in private homes and nursing care facilities. Because of these policies, many patients who need palliative care services are denied them due to lack of reimbursement to providers or receive them later than they should. While hospice benefits are paid by Medicare, palliative care services are not reimbursable. Policy changes are needed to provide sufficient reimbursement for these services and reduce or eliminate reimbursement for expensive therapies and treatments that have little or no effect on the quality or length of life of palliative, hospice, and end-of-life patients as well
as to offer palliative care to patients earlier in the disease process (Bookbinder et al., 2011; Carlson, Lim & Meier, 2011; Meier & Beresford, 2006). Medicaid policy must also be changed to allow nurse practitioners to deliver care to the underserved and poor patients who are at the end of their life. Medicaid is regulated by each state and many states have not enacted legislation that would mandate Medicaid and its associated HMOs and insurance plans to accept nurse practitioners as primary care providers. Since about one-third of states do not currently mandate empanelment for Medicaid, nurses in those states may not be reimbursed for care delivery to Medicaid patients for any services, decreasing access to care for this most vulnerable population (NIHCR, 2013). For example, a study by The Florida Legislature (2010) determined that empanelling nurse practitioners for Medicaid would result in significant savings for the state of between 7 and 44 million dollars annually.
Pain Relief and Prescriptive Authority There are needed changes in both policy and attitudes concerning provision of pain relief to end-of-life patients. Many providers and institutions are reluctant to provide narcotic pain relieve to these patients because of issues such as addiction, patient and provider attitudes toward narcotics, lack of knowledge and skills on the part of the provider about pain assessment and management, and lack of access to appropriate pain management and treatment. Policy changes need to include further research and allocation of resources (specifically money) about palliative and end-of-life care and how best to deliver it in the current healthcare environment (Tilden & Thomson, 2009; Wilkie & Ezenwa, 2012). The restrictions on nurse practitioners through state scope of practice rules and regulations also need to be changed to allow nurse practitioners full prescriptive authority, including schedule II through V controlled substances. In Florida, for example, nurse practitioners do not have the authority to prescribe any controlled substances, influencing their ability to provide adequate pain relief for their patients and, in some cases, causing duplication of services and increased costs and inconvenience to their patients. It is imperative that providers be able to appropriately manage pain in end-of-life patients in order to provide high quality, compassionate care (Aziz, Miller & Curtis, 2012; Denny & Guido, 2012; Wilkie & Ezenwa, 2012).
Other Areas of Needed Policy Models of End-of-Life Care Nurses, particularly those certified in hospice and palliative care, can lead in developing models of care. The IOM (2010) report “The Future of Nursing: Leading Change, Advancing Health” also recommended that advanced practice nurses contribute to the “evolving model of palliative
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DuBois and Reed care” (p. 426), become a part of advisory committees and panels at the local, state and federal levels, and that they are represented as palliative care experts on medical practice boards. Areas where models of end-of-life care could focus include: the nursing home setting and home-based palliative care; contracting with Medicare managed-care organizations such as Evercare Hospice and Palliative Care; and partnering with hospice organizations to provide in-house services. All of these models would rely principally on nurse practitioners to provide hospice and palliative care to nursing home patients (Carlson, Lim, & Meier, 2011). In a feasibility study comparing independent and hospice salaried nurse practitioners, the hospice-led model generated a 360 percent increase in hospice referrals, which in turn generated sufficient revenue to be profitable (Bookbinder et al, 2011). Collaborative models of care between physicians and nurse practitioners include the following roles for nurse practitioners: employed by a physician or physician group, employed by a nursing home, specializing in palliative/endof-life care working with physician specialties, and serving as care managers. The physicians involved in these models should have expertise in palliative care and end-of-life care and be willing to share patient care responsibilities and decision-making with the nurse practitioner. A written collaborative agreement between the physician and nurse should be executed, outlining each provider’s responsibilities, and comprehensive and systemic care delivery processes while allowing for some flexibility (American Medical Association, 2011).
Education Several mechanisms exist whereby nurses can obtain specialized education for end-of-life care. National guidelines and initiatives developed to improve the quality of care at end-of-life include specialized training in palliative oncology and other educational programs (Paice et al., 2006). Nurse practitioners also can be educated in palliative and end-of-life care to deliver home-based hospice care to dying or terminally-ill patients (Bookbinder et al, 2011). Current certification requirements by the National Board for Certification of Hospice and Palliative Nurses (2013) include a post-master’s certificate with a minimum of 500 hours in hospice and palliative care. Another mechanism to obtain the appropriate palliative care and end-of-life education for nurse practitioners is through the End-of-Life Nursing Education Consortium (ELNEC) project. This Robert Wood Johnson funded project was created as a national education initiative designed to improve palliative care services in the United States by educating nurse practitioners to provide the level of care needed by this patient population (American Association of Colleges of Nursing, 2013).
Conclusion Several key national organizations recognize and support the essential role of nurse or nurse practitioner in end-of-life care. The IOM recommended that nurses be allowed to practice to their full scope of practice, education, and training (IOM, 2010). Medicare recognized certified hospice nurse practitioners as qualified providers of hospice services to their patients. According to the HPNA (2011), nurse practitioners are a valuable resource in hospice and palliative care and have been shown to improve the quality of life of their patients. In addition, palliative care nurse practitioners are prepared to practice as part of a multidisciplinary team as well as to assume leadership roles in palliative and end-oflife care. Nurse practitioners can, and should, play an integral part in providing quality care to end-of-life, palliative, and hospice patients. Nurse practitioners can exploit the gap in physician-based end-of-life services by providing this care themselves across multiple settings. In order to provide the level of care needed to ensure that these patients are relieved of suffering and pain and have the support needed through the dying process, changes in legislation on state and federal levels must occur. Nurse practitioners need the ability to practice to their full scope of practice, including providing autonomous care, receiving adequate and equal reimbursement for services, and having the authority to prescribe controlled substances II through V. Nurses need to endorse policies that require specialized education so they receive the knowledge and skills necessary to be leaders in end-of-life care. Until these changes are implemented, nurse practitioners will continue to struggle to provide the quality of care that persons and their families deserve when they are facing the ending of a life. Declaration of Conflicting Interests The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this column.
Funding The author received no financial support for the research, authorship, and/or publication of this column.
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American Medical Association (2011). Collaborative and supervisory relationships between attending physicians and advanced practice nurses in long-term care facilities. (2011). Journal of the American Medical Directors Association, 12(1), 12-18. Aziz, N. M., Miller, J. L., & Curtis, J. R. (2012). Palliative and endof-life care research: Embracing new opportunities. Nursing Outlook, 60(6), 384-390. Bookbinder, M., Glajchen, M., McHugh, M., Higgins, P., Budis, J., Solomon, N., . . .Portenoy, R. K. (2011). Nurse practitionerbased models of specialist palliative care at home: Sustainability and Evaluation of feasibility. Journal of Pain and Symptom Management, 41(1), 25-34. Candy, B., Holman, A., Leurent, B., Davis, S., & Jones, L. (2011). Hospice care delivered at home, in nursing homes and in dedicated hospice facilities: A systematic review of quantitative and qualitative evidence. International Journal of Nursing Studies, 48(1), 121-133. Center to Champion Nursing in America, AARP Public Policy Institute (2010). Access to Care and Advanced Practice Nurses; A Review of Southern U.S. Practice Laws. Washington DC. Retrieved from http://www.achi.net/hcr%20docs/2011hcrworkforceresources/ access%20to%20care%20apns.pdf Carlson, M. D. A., Lim, B., & Meier, D. E. (2011). Strategies and innovative models for delivering palliative care in nursing homes. Journal of the American Medical Directors Association, 12(2), 91-98. Currow, D. C., Wheeler, J. L., Glare, P. A., Kaasa, S., & Abernethy, A. P. (2009). A framework for generalizability in palliative care. Journal of Pain and Symptom Management, 37(3), 373-386. Denny, D., L., & Guido, G., W. (2012). Under treatment of pain in older adults: An application of beneficence. Nursing Ethics, 19(6), 800-809. DiSantostefano, J. (2011). Hospice certification and recertification. The Journal for Nurse Practitioners, 7(9), 779-780. Fairman, J.A., Rowe, J.W., Hassmiller, S., & Shalala, D.E. (2011). Broadening the Scope of Nursing Practice. The New England Journal of Medicine, 364:193-196. Ferrell, B., Paice, J., & Koczywas, M. (2008). New standards and implications for improving the quality of supportive oncology practice. Journal Of Clinical Oncology, 26(23), 3824-3831. Florida Legislature (2010). Expanding Scope of Practice for Advanced Registered Nurse Practitioners, Physician Assistants, Optometrists, and Dental Hygienists. Tallahassee, FL. Retrieved from https://flanp.org/files/OPPAGA-Scope-of-Practice-Memo _1-13-2011.pdf Hospice and Palliative Care Nurses Association (2011). Assuring Choice for Seriously and Progressively Ill Patients. Retrieved from http://www.hpna.org/DisplayPage.aspx?Title=Congressional%20 Issue%20Briefs Hospice and Palliative Care Nurses Association (2010). HPNA Position Statement: Value of Advanced Practice Registered Nurses in Palliative Care. Retrieved from http://www.hpna. org/DisplayPage.aspx?Title=Position%20Statements Institute of Medicine. (2010). The future of nursing: Leading change, advancing health.
Retrieved from http://books.nap.edu/openbook.php?record_id=12956 &page=R 1 Institute of Medicine (1997). Approaching death: Improving care at the end of life. Retrieved from http://www.nap.edu/download.php?record_id=5801# Journal of Wound, Ostomy & Continence Nursing (2012). Reimbursement of Advanced Practice Registered Nurse Services: A Fact Sheet. March/April 2012, 39 (2S), S7–S16. Klein, S (2009). In Focus: Sizing up Palliative Care for Children. Washington, DC. Retrieved from http://www.commonwealthfund.org/Newsletters/Quality-Matters/2009/January-February/ In-Focus-Sizing-up-Palliative-Care-for-Children.aspx Lupu, D. (2010). Estimate of current hospice and palliative medicine physician workforce shortage. Journal of Pain and Symptom Management, 40(6), 899-911. Meier, D., & Beresford, L. (2006). Billing for palliative care: an essential cost of doing business. Journal of Palliative Medicine, 9(2), 250-257. National Board for Certification of Hospice and Palliative Nurses National Board for Certification of Hospice and Palliative Nurses (2013). Certification for Hospice and Palliative Advanced Practice Registered Nurses. Retrieved from http:// www.nbchpn.org/DisplayPage.aspx?Title=APRN%20 Overview National Institute for Health Care Reform (2013). Primary Care Workforce Shortages: Nurse Practitioner Scope-of-Practice Laws and Payment Policies. Retrieved from http://www.nihcr. org/PCP-Workforce-NPs Paice, J. A., Ferrell, B. R., Virani, R., Grant, M., Malloy, P., & Rhome, A. (2006). Graduate nursing education regarding endof-life care. Nursing Outlook, 54(1), 46-52. Phillips, S.J., (2013). Twenty-fifth annual legislative update. The Nurse Practitioner, 38,(1), 18-42 . Philpot, C., Tolson, D., & Morley, J. E. (2011). Advanced practice nurses and attending physicians: A collaboration to improve quality of care in the nursing home. Journal of the American Medical Directors Association, 12(3), 161-165. Reid, M., C., Bennett, D., A., Chen, W., G., Eldadah, B., A., Farrar, J., T., Ferrell, B., . . ., & Zacharoff, K., L. (2011). Improving the pharmacologic management of pain in older adults: Identifying the research gaps and methods to address them. Pain Medicine, 12(9), 1336-1357. Robert Wood Johnson Foundation (2013). Implementing the IOM Future of Nursing Report–Part III: How nurses are solving some of primary care’s most pressing challenges. Retrieved from http://www.rwjf.org/content/dam/files/file-queue/cnf2012 0810.pdf Tilden, V.P., & Thompson, S. (2009). Policy issues in end-of-life care. Journal of Professional Nursing, 25 (6), 336-338. U.S. Department of Health and Human Services (R 2013). Medicare Hospice Benefits. Retrieved from http://www.medicare.gov/ Pubs/pdf/02154.pdf Wilkie, D. J., & Ezenwa, M. O. (2012). Pain and symptom management in palliative care and at end of life. Nursing Outlook, 60(6), 357-364.
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research-article2013
NSQXXX10.1177/0894318413509717Nursing Science QuarterlyDuBois and Reed
Health and Public Policy
The Nurse Practitioner and Policy in End-of-Life Care
Nursing Science Quarterly 2014, Vol 27(1) 70–76 © The Author(s) 2013 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0894318413509717 nsq.sagepub.com
Janet C. DuBois, RN; DNP1 and Pamela G. Reed, RN; PhD; FAAN2
Abstract The focus of this column is the interface between policy and end-of-life care, particularly as provided by advanced nurse practitioners. The complexities of end-of-life along with barriers in practice can diminish quality of life for patients and their families. Changes in policy are needed to enable nurse practitioners their full scope of practice in a way that benefits patients and families at end-of-life. Three areas particularly relevant to policy for nursing practitioners and end-of-life care are addressed: scope of practice, reimbursement, and prescribing practices. Other recommendations for policy and end-of-life care are discussed. Keywords advanced practice, end-of-life, health policy, nurse practitioner, palliative care
The adequacy of end-of-life care is an increasing concern in society and among healthcare professionals. There continues to be critical need for policy that promotes and supports nurses’ use of knowledge, experiences, and skills in caring for patients at end-of life. This column addresses three key areas of needed change in policy for end-of-life nursing care: scope of practice, reimbursement, and prescribing practices. In addition, background on the significance of this area of care is briefly reviewed, and barriers to advanced nursing practice are discussed. The authors conclude with policy recommendations for the future of end-of-life nursing care.
End-of-Life Care as Quality of Life Care Palliative care is integral to caring for someone at end-oflife. While the literature suggested that there are differences in the exact meaning or definition of the term palliative care, most experts and professional organizations agree that the goal of palliative care is to provide care to patients and their families and prevent or relieve the suffering of those who have a life-limiting illness, regardless of the stage of the disease or available treatment options. This broad description of palliative care encompasses the concepts of hospice and endof-life care, which are more specific in terms of the stages and treatment options available for patients enrolled in those services (Currow, Wheeler, Glare, Kaasa, & Abernethy, 2009; Hospice and Palliative Care Nurses Association [HPNA], 2010). Palliative care is about quality of life and extends beyond but includes a focus on pain and symptom management. Medicare defines hospice care as a “program of care and support for people who are terminally ill” (U.S. Department
of Health and Human Services [USDHHS], 2013, pg. 4). In addition, there are other factors that help define the services and care involved with the hospice program including focusing on patient comfort rather than on experimenting with aggressive treatments to cure disease. Hospice philosophy promotes holistic care by a team of trained professionals who address emotional, spiritual, social, and physical needs. Services provided by hospice include an array of components in addition to the physical care of patients such as counseling, medical equipment, and necessary supplies. Hospice services are generally provided in the home for any patient with a terminal illness. Family and caregiver support during bereavement is also part of the services that hospice provides (USDHHS, 2013).
Historical Views on Policy Over 15-years ago, the Institute of Medicine (IOM, 1997) issued a major report recommending specific policies for end-of-life care – a report that is as relevant today as it was then. This report was the work of a 12-member committee who conducted an extensive study to determine how care for terminally ill and dying patients in America could be improved. The committee found that society focuses more on cure of disease than quality of life in the dying population 1
Assistant Clinical Professor, The University of Arizona Professor, The University of Arizona
2
Contributing Editor: Pamela G. Reed, RN, PhD, FAAN, Professor, University of Arizona College of Nursing, 1305 N. Martin St., Tucson, AZ 85721-0203 Email: [email protected]
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DuBois and Reed and healthcare systems, and that organizations and providers lack adequate education to develop the attitudes, skills, and knowledge for providing appropriate end-of-life care to people. This imbalance in the American healthcare culture has resulted in a lower quality of life for terminally-and chronicallyill patients whose disease state is progressive and incurable. The results of the study suggested that the American healthcare system tended to over-treat patients who were terminally ill and failed to support them adequately through the process of dying, especially in terms of relieving suffering and pain. In light of these findings, the IOM (1997) committee listed a spectrum of behaviors and strategies relevant to developing policy on quality end-of-life care: 1. Focus end-of-life care on support and symptom management 2. Commit to relieving suffering and pain 3. Implement system changes to provide financing 4. Reform controlled substances laws 5. Incorporate end-of-life care in educational programs and create specialty programs for interested providers 6. Increase the use of evidenced based knowledge in care 7. Increase research in the field of end-of-life care Since this IOM report, research findings have continued to support hospice and other end-of-life care as significantly increasing quality of life for the individuals and families. As one example, the findings from multiple studies reported in a systematic review of literature demonstrated a significant increase in quality of life by hospice patients as compared with non-hospice patients (Candy, Holman, Leurent, Davis, & Jones, 2011). Hospitalizations for hospice patients were lower and there were fewer inpatient days than for non-hospice patients. In addition, patients and families reported a greater level of satisfaction with their healthcare team, associated healthcare costs were lower, and pain control was better. Palliative care, more broadly, avoids inappropriate medical interventions and associated distress from these treatments, facilitates communication regarding decisions, increases access to homecare services, and provides for emotional and spiritual support of the individual and family. Nevertheless, barriers to adequate end-of-life care prevail in society.
Barriers to Quality End-of-Life Care Barriers to adequate end-of-life care exist across the trajectory of life-limiting illness from diagnosis to long-term and hospital-based care. These barriers signify areas of needed policy development or change in order to promote quality of life at the end-of- life. Some barriers are related to shortages of nurses who are knowledgeable or interested in end-of-life practice. Other barriers – particularly regulatory barriers – may be linked to underlying philosophies of healthcare among providers and institutions.
In reference to the beginning of the disease trajectory, patients should be, but often are not, introduced to the concept of palliative care early in the disease process. Diagnosis and explanation of likely symptoms of the disease mark an opportunity for introducing the idea of palliative care. Discussion of treatment with its potential side effects and symptoms is another time for discussing how palliative care can benefit individuals (Ferrel, Paice, & Koczywas, 2008). Regarding hospital care, according to Lupu (2010), the American Academy of Hospice and Palliative Medicine Work Force Task determined that there is a shortage of hospital-based hospice and palliative care providers. Nurse practitioners are frequently utilized in hospital-based hospice team care, but there is still a shortage of physicians and nurses capable of providing expert care. The task force estimates that a shortage of approximately 14,000 to 18,000 hospice and palliative care providers will exist in the near future. Moreover, if hospital philosophy of care is oriented toward treatment at all costs, there is less support for and recognition of the need for palliative care personnel and services. In terms of long-term care, end-of-life or palliative care can be provided in the nursing home as differentiated from hospice care, in that palliative care is not dependent on timing (no required estimated six month end-of-life timeframe) or reimbursement. Palliative care focuses on management of symptoms and may also include life- prolonging treatment to improve quality of life. Based on current research findings, it is estimated that as many as 80 percent of nursing home patients would benefit from palliative care services (Carlson, Lim & Meier, 2011), but these services are rare in longterm care settings. Approximately 20 percent of the care given in nursing homes is provided by nurse practitioners. The authors cited multiple studies on the effectiveness of nurse practitioner care in the nursing home setting, including decreased hospitalization, decreased loss of function, increased patient satisfaction, and a decrease in patient mortality (Philpot, Tolson & Morle, 2011). But a principle barrier to palliative care in the nursing home setting is the lack of trained and qualified palliative care providers (Carlson, Lim & Meier, 2011; DiSantostefano, 2011). In addition, there are three significant regulatory barriers to delivering timely and needed palliative care to nursing home patients (Carlson, Lim & Meier, 2011). The first is recognition of restorative but not palliative care in quality of care standards; the Resident Assessment Instrument (RAI), used in nursing homes to provide quality of care data on improvement for reimbursement does not account for palliative care aimed toward symptom management. This discourages nursing homes from providing palliative care because palliative care is considered to be a lower quality of care, which likely receives a lower level of reimbursement. The second regulatory barrier is that nursing homes receive a higher level of reimbursement when a patient is discharged back to the nursing home from an inpatient-hospital setting.
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Obviously this may result in an increased incentive to send nursing home patients to the hospital instead of treating them as palliative patients in the nursing home (Carlson, Lim & Meier, 2011). The third regulatory barrier is that Medicare does not pay for room and board of a nursing home patient enrolled in hospice while they have skilled nursing home benefits remaining; patients are forced to choose between the hospice benefit and Medicare coverage. If patients choose hospice, they are either forced to leave the nursing home or required to pay out of pocket for the room and board charges in the nursing home until all their skilled nursing benefits with Medicare are exhausted. This disincentive most often results in the patient declining hospice services that would enhance quality of life during their last months of life.
Barriers in Pain Management Pain and other inadequately treated symptoms at end-of-life have far-reaching consequences for quality of life. Consequences of untreated pain include depression, decreased mobility, changes in cognition, and poor self-perception of health. Pain is especially prevalent in the last four months preceding death and providing sedating medications to patients has been shown to reduce symptoms of unrelieved pain such as delirium and dyspnea (Denny & Guido, 2012; Wilkie & Ezenwa, 2012). The highest risk group for undertreated pain is older adults above the age of 70. Elderly patients experience pain more frequently than other populations. As many as 50 percent of community-dwelling older adults experience pain that interferes with their daily activities and approximately 50 percent of all nursing home patients report experiencing pain on a daily basis. Cognitive changes in the elderly or terminally-ill patients often make it difficult to assess the true level of pain the patient is experiencing. Additionally, negative attitudes of family and providers toward narcotic analgesics frequently adds to the under treatment of pain. These perceived negative consequences of narcotic use include both provider and patient fear of addiction and loss of cognitive and physical function (Aziz, Miller & Curtis, 2012; IOM, 1997; Reid et al., 2011; Wilkie & Ezenwa, 2012). The National Institute of Nursing Research (NINR) discussed the issues surrounding palliative and end-of-life care at their 2011 summit on The Science of Compassion: Future Directions in End-of-Life and Palliative Care. One of the key domains identified at the Summit for future research was pain and symptom management. The National Institutes of Health (NIH) 2010 Pain Consortium made several recommendations for research needed to close the gaps in pain management knowledge in the following areas: opiate pharmacology, prescribing, addiction, discontinuation, and safety and effectiveness, as well as non-pharmacologic methods of pain management, over-the-counter therapies,
and attitudes and beliefs among patients, family members, and providers about pain management (Reid, et al., 2011). Increased knowledge in these areas could be used to inform better policies on pain management. Three policy-relevant areas were identified among the multiple systems’ barriers to adequate pain management and end-of-life care at the NINR 2011 Science of Compassion summit. These were the following: lack of access to care, reimbursement, and regulatory restrictions for some treatment modalities (Aziz, Miller, & Curtis, 2012).
Scope of Practice Barriers Scope-of-practice issues for nurse practitioners exist on both the federal and state levels. Many of the regulatory and statutory scope of practice issues are not federally legislated but are based on individual state regulations. States regulate nurse practitioners’ scope of practice and determine what services nurse practitioners can offer, the level of autonomy nurse practitioners have (independent, collaborative, supervisory) and they provide the statutory and regulatory guidance through their nurse practice acts. Unfortunately, states do not base their nurse practice acts primarily on safety or quality data but instead nursing practice acts are arbitrarily enacted by state legislators and boards of nursing and medicine, creating unnecessary barriers to practice. Practice requirements vary from state to state in reference to prescribing privileges, physician supervision or collaboration requirements, chart reviews, physician availability (either in distance or by contact), and ability to order other professional services. Credentialing for licensure is also determined by each state although all states now require national certification for licensure as a nurse practitioner (Fairman, Rowe & Hassmiller, 2011; National Institute for Healthcare Reform [NIHR], 2013). Other impediments include lack of ability to prescribe controlled substances, inability to perform worker’s compensation physicals or certify disability, inability to sign and certify a death certificate, inability to admit patients to psychiatric facilities, and lack of legislation to empanel nurse practitioners as Medicaid primary care providers (Center to Champion Nursing in America, AARP Public Policy Institute [CCNA] (2010); Fairman, Rowe & Hassmiller, 2011; NIHR, 2013). Federal scope of practice issues include inability to certify patients for Medicare home health services or hospice, order durable medical equipment, admit patients to skilled nursing facilities, and provide services under the Federal Employee’s Compensation Act. The inability to admit or certify patients for home health and hospice services has a direct impact on the ability of the nurse practitioner to provide direct services to patients at the end-of-life or those who have life-limiting illnesses. Because of these regulations, physicians are needed to initiate or certify these services, often requiring a duplication of services, additional visits or time spent with another
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DuBois and Reed provider, which inevitably result in a delay in initiating services or therapy. This results in an additional burden to both the patient and the healthcare system, and may increase the cost of care (American Association of Nurse Practitioners [AANP], 2012a, 2012b; NIHR, 2013; USDHHS, 2013).
Reimbursement Barriers The need for hospice services and for specialists in palliative care will undoubtedly increase in the near future. Major barriers to sustaining a nurse practitioner model of care at endof life are lack of reimbursement from Medicare/Medicaid managed care plans, inequity in nurse practitioner reimbursement from Medicare as compared with physician reimbursement (nurses receive 85% of the covered physician fees for the same services), and the limited ability of nurse practitioners to obtain new referrals due to the requirement that a physician must see the patient first. Bookbinder and colleagues (2011) found that the collection rate of fees in their study was only 50 percent, further reducing nurses’ reimbursement. Nurse practitioners working directly for the hospital were unable to generate enough revenue to sustain the project because they cannot bill a separate charge for palliative care or hospice services, which are bundled into the hospitals nursing services under the appropriate DRG (Bookbinder et al., 2011; Meier & Beresford, 2006). However, nurse practitioners salaried by a private physician group may bill for their hospital services through the physician. To receive reimbursement directly, the nurses must be listed as the patient’s attending provider. Many nurses (as well as physicians) are uncertain or reluctant to bill for the correct level of services provided for fear of upcoding (the practice of using higher procedure codes than codes of services actually rendered in order to receive higher reimbursement from Medicare) and its subsequent penalties if proven, further reducing reimbursement for appropriate services provided to the patient. Since Medicaid services are administered on a state level, reimbursement guidelines can differ from state to state, further impeding adequate reimbursement for nurse practitioners who provide palliative and hospice services to this population. In addition, third party payers may have reimbursement policies that vary from state to state (Journal of Wound, Ostomy & Continence Nursing 2012; Meier & Beresford, 2006). Reimbursement for children’s palliative or hospice care can be even more challenging. Because it is more difficult to predict the life expectancy of children with life-ending diseases, Medicaid often declines to pay for such services. Only about 20 percent of children who qualify for hospice services actually receive these services due to barriers in reimbursement not only from Medicaid, but from third party payers as well because their payment structure for these benefits is geared toward adults. Additionally, parents are extremely reluctant to sign a waiver for further treatment of their
terminally-ill child even if the physician is willing to certify that they are within six months of death (Klein, 2009).
Prescribing Controlled Substance Barriers Since pain control and relief is fundamental to end-of-life and palliative care (Aziz, Miller, & Curtis, 2012; Denny & Guido, 2012; IOM, 1997; Wilkie & Ezenwa, 2012), the barriers with the inability of nurse practitioners to prescribe controlled substances influences their ability to provide an adequate level of care to their patients. It also may create additional costs and less effective use of resources when the nurses must contact or send their patients to a physician to receive adequate pain relief (National Institute for Health Care Reform [NIHCR], 2013; Robert Wood Johnson Foundation, 2013). Nurse practitioners in all states except Florida have the ability to prescribe controlled substances (CS), although the specifics of what and how much they can prescribe vary from state to state. Alabama, one of the last holdouts, recently passed legislation allowing nurse practitioners to prescribe controlled substances III through V. (Most of the drugs found in CS II through V are narcotic analgesics such as codeine, hydrocodone, oxycodone, and morphine-type drugs.) All states except Florida allow some level of controlled substance prescribing but many include restrictions such as, requiring physician protocols or written approval delineating the amount and type of controlled substance the nurse practitioner is allowed to prescribe. Seven states allow nurse practitioners to prescribe only III through V level drugs and one state allows only IV through V levels (Phillips, 2013).
Policy-Relevant Recommendations Many organizations have recommended policy changes that would allow nurse practitioners to practice to their full scope of practice. Perhaps the most powerful of these recommendations came from The Institute of Medicine (2010) in its report “The Future of Nursing: Leading Change, Advancing Health”. The IOM established this two-year initiative to develop recommendations and a blueprint on how nursing can meet some of the nation’s new challenges resulting in part from the passing of the Affordable Care Act (ACA). The ad hoc committee (IOM, 2010) assigned to the initiative developed four key messages: 1. Nurses should practice to the full extent of their education and training. 2. Nurses should achieve higher levels of education and training through an improved education system that promotes seamless academic progression. 3. Nurses should be full partners, with physicians and other health profession in redesigning health care in the United States.
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4. Effective workforce planning and policy making require better data collection and an improved information infrastructure. (p. 29) The IOM report (2010) does not make specific recommendations but instead broadly states that nurses, including advanced registered nurse practitioners, should practice to the full scope of their practice. Three specific areas that should be targeted for policy change to facilitate more adequate end-of-life care by nurse practitioners are scope of practice, reimbursement, and prescriptive authority.
Scope of Practice According to NIHCR (2013), a recent recommendation by the National Governors Association is to facilitate nurse practitioner autonomy by liberalizing state scope of practice regulations and laws. Other reports indicate support for the liberalization of state scope of practice laws and agreement that removing these barriers to nurse practitioner care would result in greater access for patients to high quality, cost effective care (CCNA, 2010; Fairman et al., 2011; NIHCR, 2013; Phillips, 2010). The AANP (2012) has published several position papers recommending complete, autonomous practice for nurse practitioners through legislative changes in scope of practice at both the state and federal levels. Along with this, is the specific recommendation to change the language in federal legislation, laws, and regulations to the use of non-specific provider terms. By eliminating the terms physician and medical doctor and substituting provider into many Medicare regulations, nurse practitioners would be able to provide direct services to patients without having to obtain physician certification or initiation for services such as hospice, home health, ordering durable medical equipment, and providing care to federal employees, again increasing access to better care for more Americans and decreasing costs (AANP, 2012; Fairman, 2011; NIHCR, 2013).
Reimbursement Reimbursement for palliative care in general needs to occur to ensure that end-of-life patients receive the highest quality care possible (Bookbinder et al., 2011; HPNA, 2010; Tilden & Thompson, 2009). Current Medicare policy incentivizes nursing homes and hospitals to provide unnecessary services and hospitalizations and disincentivizes’ palliative care services delivered in private homes and nursing care facilities. Because of these policies, many patients who need palliative care services are denied them due to lack of reimbursement to providers or receive them later than they should. While hospice benefits are paid by Medicare, palliative care services are not reimbursable. Policy changes are needed to provide sufficient reimbursement for these services and reduce or eliminate reimbursement for expensive therapies and treatments that have little or no effect on the quality or length of life of palliative, hospice, and end-of-life patients as well
as to offer palliative care to patients earlier in the disease process (Bookbinder et al., 2011; Carlson, Lim & Meier, 2011; Meier & Beresford, 2006). Medicaid policy must also be changed to allow nurse practitioners to deliver care to the underserved and poor patients who are at the end of their life. Medicaid is regulated by each state and many states have not enacted legislation that would mandate Medicaid and its associated HMOs and insurance plans to accept nurse practitioners as primary care providers. Since about one-third of states do not currently mandate empanelment for Medicaid, nurses in those states may not be reimbursed for care delivery to Medicaid patients for any services, decreasing access to care for this most vulnerable population (NIHCR, 2013). For example, a study by The Florida Legislature (2010) determined that empanelling nurse practitioners for Medicaid would result in significant savings for the state of between 7 and 44 million dollars annually.
Pain Relief and Prescriptive Authority There are needed changes in both policy and attitudes concerning provision of pain relief to end-of-life patients. Many providers and institutions are reluctant to provide narcotic pain relieve to these patients because of issues such as addiction, patient and provider attitudes toward narcotics, lack of knowledge and skills on the part of the provider about pain assessment and management, and lack of access to appropriate pain management and treatment. Policy changes need to include further research and allocation of resources (specifically money) about palliative and end-of-life care and how best to deliver it in the current healthcare environment (Tilden & Thomson, 2009; Wilkie & Ezenwa, 2012). The restrictions on nurse practitioners through state scope of practice rules and regulations also need to be changed to allow nurse practitioners full prescriptive authority, including schedule II through V controlled substances. In Florida, for example, nurse practitioners do not have the authority to prescribe any controlled substances, influencing their ability to provide adequate pain relief for their patients and, in some cases, causing duplication of services and increased costs and inconvenience to their patients. It is imperative that providers be able to appropriately manage pain in end-of-life patients in order to provide high quality, compassionate care (Aziz, Miller & Curtis, 2012; Denny & Guido, 2012; Wilkie & Ezenwa, 2012).
Other Areas of Needed Policy Models of End-of-Life Care Nurses, particularly those certified in hospice and palliative care, can lead in developing models of care. The IOM (2010) report “The Future of Nursing: Leading Change, Advancing Health” also recommended that advanced practice nurses contribute to the “evolving model of palliative
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DuBois and Reed care” (p. 426), become a part of advisory committees and panels at the local, state and federal levels, and that they are represented as palliative care experts on medical practice boards. Areas where models of end-of-life care could focus include: the nursing home setting and home-based palliative care; contracting with Medicare managed-care organizations such as Evercare Hospice and Palliative Care; and partnering with hospice organizations to provide in-house services. All of these models would rely principally on nurse practitioners to provide hospice and palliative care to nursing home patients (Carlson, Lim, & Meier, 2011). In a feasibility study comparing independent and hospice salaried nurse practitioners, the hospice-led model generated a 360 percent increase in hospice referrals, which in turn generated sufficient revenue to be profitable (Bookbinder et al, 2011). Collaborative models of care between physicians and nurse practitioners include the following roles for nurse practitioners: employed by a physician or physician group, employed by a nursing home, specializing in palliative/endof-life care working with physician specialties, and serving as care managers. The physicians involved in these models should have expertise in palliative care and end-of-life care and be willing to share patient care responsibilities and decision-making with the nurse practitioner. A written collaborative agreement between the physician and nurse should be executed, outlining each provider’s responsibilities, and comprehensive and systemic care delivery processes while allowing for some flexibility (American Medical Association, 2011).
Education Several mechanisms exist whereby nurses can obtain specialized education for end-of-life care. National guidelines and initiatives developed to improve the quality of care at end-of-life include specialized training in palliative oncology and other educational programs (Paice et al., 2006). Nurse practitioners also can be educated in palliative and end-of-life care to deliver home-based hospice care to dying or terminally-ill patients (Bookbinder et al, 2011). Current certification requirements by the National Board for Certification of Hospice and Palliative Nurses (2013) include a post-master’s certificate with a minimum of 500 hours in hospice and palliative care. Another mechanism to obtain the appropriate palliative care and end-of-life education for nurse practitioners is through the End-of-Life Nursing Education Consortium (ELNEC) project. This Robert Wood Johnson funded project was created as a national education initiative designed to improve palliative care services in the United States by educating nurse practitioners to provide the level of care needed by this patient population (American Association of Colleges of Nursing, 2013).
Conclusion Several key national organizations recognize and support the essential role of nurse or nurse practitioner in end-of-life care. The IOM recommended that nurses be allowed to practice to their full scope of practice, education, and training (IOM, 2010). Medicare recognized certified hospice nurse practitioners as qualified providers of hospice services to their patients. According to the HPNA (2011), nurse practitioners are a valuable resource in hospice and palliative care and have been shown to improve the quality of life of their patients. In addition, palliative care nurse practitioners are prepared to practice as part of a multidisciplinary team as well as to assume leadership roles in palliative and end-oflife care. Nurse practitioners can, and should, play an integral part in providing quality care to end-of-life, palliative, and hospice patients. Nurse practitioners can exploit the gap in physician-based end-of-life services by providing this care themselves across multiple settings. In order to provide the level of care needed to ensure that these patients are relieved of suffering and pain and have the support needed through the dying process, changes in legislation on state and federal levels must occur. Nurse practitioners need the ability to practice to their full scope of practice, including providing autonomous care, receiving adequate and equal reimbursement for services, and having the authority to prescribe controlled substances II through V. Nurses need to endorse policies that require specialized education so they receive the knowledge and skills necessary to be leaders in end-of-life care. Until these changes are implemented, nurse practitioners will continue to struggle to provide the quality of care that persons and their families deserve when they are facing the ending of a life. Declaration of Conflicting Interests The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this column.
Funding The author received no financial support for the research, authorship, and/or publication of this column.
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