Integrating Palliative Care Into Primary Care

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Integrating palliative care into primary care for patients with chronic, life-limiting conditions 2.0 CONTACT HOURS Integrating palliative care into primary care for patients with chronic, life-limiting conditions

Abstract: As longevity increases, individuals with chronic, life-limiting conditions will live longer with disease burden and functional decline. Nurse practitioners can integrate symptom management, early decision-making, and supportive care into the primary care setting to improve quality of life and decrease economic and emotional impact at the end of life.

By Ann Selena Cleary, DNS, RN, NP-C

lthough life expectancy is increasing worldwide, living longer is not always syn- onymous with a greater number of healthy years, as increasing age and risk for A developing a chronic, life-limiting condition are related. Approximately 20 mil- lion older individuals in the United States have at least two or more chronic, life-limiting health conditions; the most common are diabetes mellitus, hypertension, high cholesterol, and heart disease.1 These conditions last more than 1 year, require ongoing medical care, and affect inde- pendence and activities of daily living.2 Increased ED and ofﬁ ce visits, hospitalizations, and home healthcare services are associated with increasing age and multiple chronic conditions. In 2010, more than half of Medicare expenditure went to hospitalizations for 15% of the Medicare population, a disproportionate amount.3 In essence, this population is likely to experience increasing symptoms and a decrease in quality of life for several years prior to death. The majority of older adults in the United States have health insurance under Medicare, which includes a hospice beneﬁ t for the last 6 months of life. However, patients could live months to years with increasing symptoms and worsening quality of life prior to hospice eligibility. During this time, care goals should

focus on symptom management, psychosocial support, and advance care planning. / iStock © Tashi-Delek Keywords: end-of-life care, life-limiting conditions, palliative care

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The purpose of this article is to increase knowledge, During an extensive review of palliative care literature, clarify misconceptions, and raise awareness among primary Van Mechelen and colleagues found that 30 years of pal- care nurse practitioners (NPs) who care for older adults liative care research had been conducted without a clear with chronic, life-limiting health conditions. Resources and defi nition of the palliative care patient.6 This lack of clarity strategies are outlined to assist the NP to identify when and may refl ect the fact that end-of-life care is still being es- how to integrate palliative care into primary care if hospice tablished. Professional organizations representing hospice care is not considered an option. and palliative care only emerged within the last 30 years, with palliative medicine a board-certifi ed subspecialty of ■ Case study medicine since 2006.7 Nursing certification and educa- Ms. C was an 80-year-old woman living with her son, grand- tion have also expanded and now include seven categories daughter, and one great-grandchild in an urban, three- for certification, including advanced practice registered bedroom apartment. Her medical diagnoses included: type nurses. Approximately 17,000 U.S. nurses have been certi- 2 diabetes mellitus, hypertension, atrial fi brillation, heart fi ed since 1999 when certifi cation was expanded to include failure (HF), coronary artery disease, oxygen-dependent both hospice and palliative care nurses; however, there is no chronic obstructive pulmonary disease (COPD), osteoar- breakdown of certifi ed NPs or registered nurses.8 thritis, peripheral neuropathy, kidney dysfunction, diabetic Patient and provider communication barriers have been retinopathy, depression, and a chronic venous stasis ulcer on identifi ed; however, nuances (such as connotations attached a lower extremity. to terms) are also signifi cant.9 The choice of one term over During the last 8 months of her life, Ms. C experienced another can alter patient communication signifi cantly, as one several exacerbations of COPD (requiring hospitalization) study found when clinicians used or avoided using a term such and was intubated for an exacerbation of HF during the as “palliative” depending on the message they wanted to com- third hospitalization. The patient received care for the ve- municate. For example, cardiologists who wanted to initiate nous stasis ulcer at a wound-care center and also received an end-of-life discussion with patients diagnosed with HF home care services from a long-term care program that suggested referral to a “palliative medicine specialist” to com- provided a home healthcare aide and an RN who visited municate a poor prognosis to the patient. This often occurred Ms. C monthly and as needed. without any further explanation about overall condition or Her treatment regimen included subcutaneous insulin, why they recommended the referral. Conversely, palliative metered-dose inhalers for COPD, and approximately 10 care specialists initially avoided using their title or the word oral medications daily. Ms. C walked slowly with a walker, “palliative,” preferring to describe their role and how they could needed assistance with all activities of daily living, and in help the patient, thereby avoiding what they believed to be the last 3 months of her life, left her bedroom only to use negative connotations the patient may have about their role.10 the bathroom or attend medical appointments. Several days after discharge from the third rehospitalization while ■ Hospice care traveling to a follow-up cardiology appointment, she suf- In contrast, hospice care is less likely to be misunderstood. fered sudden cardiac arrest and died. Ms. C had completed Hospice services in the United States, as provided to Medi- a healthcare proxy but had no other advance directive at care recipients under the Medicare Hospice Benefi t, have the time of her death. changed little since the 1980s. Enrollment requires referral from the primary care provider (PCP) and certifi cation that ■ End-of-life terms and models of care the patient has 6 months or less to live. The patient exchanges Although many aspects of this case study may be familiar one benefi t for another, thereby waiving regular Medicare to NPs, the transition taking place in end-of-life care over benefi ts for hospice benefi ts, which results in all care being the last 2 decades may be unfamiliar, as new models of care coordinated and provided by the hospice.11 In 2014, a new have emerged.4,5 In addition, terms used in end-of-life care model (the Medicare Care Choices Model) was introduced are still not universally understood, creating confusion to allow patients with advanced cancer, COPD, HF, or HIV/ among healthcare providers (HCPs) and the public. The AIDS to receive both palliative and curative services. It should terms “hospice,” “terminal care,” “palliative care,” and “end- be noted that NPs are not authorized to order hospice care, of-life care” have been and continue to be used interchange- although they may recertify such care after it has been or- ably—both in clinical practice and the literature. These dered by a physician.12 terms describe care for patients diagnosed with serious, The term “palliative care” has evolved considerably over life-limiting, and nonlife-limiting (but chronic) conditions; the last several decades. Until the 1990s, it was frequently used however, these are not interchangeable terms.4-6 interchangeably with the term “hospice” and mostly to describe

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the dying cancer patient. During this time, a conceptual change led to a more philosophical approach to patient care with any Quality of life and symptom burden at diagnosis condition that could not be cured, although the patient was not imminently dying. This led to the establishment of specialized High level palliative care programs in hospitals and the community; how- Quality of life at diagnosis ever, unlike hospice care, there is no reimbursement provision, so these programs are reimbursed as other medical services.4 The recent Medicare Care Choices Model allows primary care Palliative and service reimbursement under Medicare (with the hospice por- Primary care Hospice care primary care tion reimbursed by a fl at monthly fee).5 The shift in using the term “palliative care” can also be traced to changes in the World Health Organization’s (WHO’s) defi nition, which initially only applied to patients with cancer. The most recent defi nition includes other life- Symptoms at diagnosis limiting conditions and associated symptoms—not only Low level pain—but all dimensions of the patient’s life, including family Time or other caregivers.13,14 Despite differences from one defi nition This abstract representation may assist NPs in identify- to another, the commonality is integrating palliative care into ing where a patient is in the disease course so as to proactively plan care decisions. As symptoms progress, usual active treatment rather than following treatment that palliative care becomes a greater focus. fails or as a replacement.4 Furthermore, the fi nal point in the WHO defi nition (that of concurrent, active treatment and Source: The fi gure was developed by Ann Selena Cleary, DNS, RN, NP-C. palliative care) has been demonstrated to improve quality of life and life expectancy in patients with lung cancer.15 tween symptoms and quality of life, care will transition over time (see Quality of life and symptom burden at diagnosis). ■ Integrating palliative care into primary care Despite palliative care programs developing over the last de- ■ Introducing palliative care cade with demonstrated patient benefi ts for those receiving While other models for initiating palliative care have suggested care in hospital-based palliative care programs, a lack of re- palliation start concurrently with a serious condition’s diagno- imbursement has precluded widespread expansion into the sis, the public still does not see chronic conditions such as HF or community.4 Providing palliative care would then fall to the COPD as serious, making early disease course discussion more PCP, many of whom are NPs whose education may not have challenging.17,18 There continues to be a greater association of included end-of-life care at either the undergraduate or gradu- palliative care with cancer than HF in the public mind, which ate level, since few colleges and universities across the United many individuals still consider to be a mostly benign condi- States offer graduate programs in hospice and palliative care.8 tion.10 When patients diagnosed with metastatic non–small cell Providing both palliative and primary care to patients lung cancer received and benefi ted from early palliative care, with advanced chronic conditions is a formidable challenge, symptom burden was likely signifi cant; therefore, a greater especially when patients have several providers as in this case benefi t would have been expected.15 This may not be the case in study. Each provider focuses on his or her specialized area of patients with a new diagnosis of COPD or HF, many of whom care and prescribes treatment perhaps without considering present with low symptom burden at diagnosis and the focus benefi ts or life expectancy. One recent study in patients with of care is on disease management—not advance planning. HF showed that neither providers nor patients were good Integrating palliative care in the primary care setting can at predicting survival, with both groups overestimating life be done using a stepwise approach. It would be appropriate expectancy. This speaks more to judgment rather than the to provide psychosocial support and education (with regard use of a predictive model that was accurate when compared to the chronicity and incurable nature of the disease) so the with the patient’s and provider’s estimates.16 In addition, patient and family have adequate time to adjust and prepare. issues such as when to change treatment, initiate discussion This may not always occur, as patients have reported not about treatment goals, and communicating with the patient knowing about the seriousness of an HF diagnosis until and family effectively can be time-consuming, requiring a the disease is more advanced.10 Early discussion and open- team approach and communication expertise.4 ness allow for treatment decisions to be made thoughtfully Knowing when to integrate palliative care is the fi rst step rather than automatically as may have been the situation in in primary care. Since there is a converse relationship be- this case study. Other healthcare disciplines have also called www.tnpj.com The Nurse Practitioner • March 2016 45

for early discussion and palliative care introduction rather cancer patients are referred to hospice within the last week than interventions directed toward managing medical crises of life.11,24 In the case of Ms. C, three hospitalizations within where the patient’s level of functioning has deteriorated.19 a year, a declining Karnofsky score, and concurrent COPD HF and COPD have been identifi ed as appropriate disease and HF diagnoses are validated indicators for palliative care. states for palliative care. Assessment tools and indicators In addition, in HF, other indicators include New York Heart are available to help NPs identify when to initiate palliative Association (NYHA) functional classifi cation IV and increas- care. NPs may be familiar with tools, such as the Karnofsky ing symptoms unresponsive to medical management, such as Performance Status score, one of several indicators used by diuresis.20 While Ms. C would have been eligible for hospice Thoonsen and colleagues who developed a model for PCPs during the last 6 months of her life, one could ask if she would to identify patients diagnosed with HF and COPD who were have benefi ted from a transition of care over a longer period of appropriate for palliative care.20 This evidence-based set of time with greater focus on symptom management and quality indicators includes clinical data, such as worsening symp- of life. This can take the form of medication review, selective toms and exacerbations, three or more hospitalizations, and diagnostic testing, and scaling back medical appointments. a Karnofsky score of 50% or lower.20 The Gold Standards Oncology was fi rst to embrace early transition to pallia- Framework model (developed in the United Kingdom in 2001 tive care; however, end of life may be easier to defi ne, par- for use in the primary care setting) has resulted in identify- ticularly among those diagnosed with metastatic lung cancer ing patients who would benefi t from palliative care earlier; where the prognosis’ perception is poor.10 When patients with however, patient outcome data are not yet available.21 metastatic lung cancer received early palliative care, they also Advance care planning and decision making is strongly received earlier hospice referral and fewer chemotherapy recommended. NPs will be familiar with durable power of treatments in the last 2 months of life.25 The goal is to achieve attorney and healthcare proxy. In addition, some states use similar results in patients diagnosed with HF and COPD. a more expansive document, either the Physician Orders for Gait speed has been identifi ed more recently in severe Life Sustaining Treatment (POLST) or the Medical Orders COPD as the strongest predictor in identifying increased risk for Life Sustaining Treatment (MOLST). This is appropriate of 12-month mortality, and therefore, an appropriate indica- for patients with serious illnesses who wish to avoid life- tor for end-of-life discussion and decision making.26 Other sustaining treatment and could die within a year. predictors in COPD that identify patients appropriate for The POLST and MOLST, which are broader than the do- palliative care include: a Karnofsky score of 50% or lower; HF not-resuscitate (DNR) order, include options for other inter- presence; weight loss of 10% in 6 months; and objective signs ventions, such as artifi cially administered fl uids and nutrition, of dyspnea.20 Hospitalization or exacerbation are opportune antibiotics, and hospitalization; these documents are trans- moments to regroup and engage the patient and family regard- ferable across care settings. Decision-making conversations ing care goals. It is especially important to address end of life should be documented, and the state-authorized POLST or early in advanced HF due to the high risk of sudden death.16 MOLST form should be completed. It should be noted that this type of documentation has not been developed in all states and ■ Patient readiness for end-of-life care differs from state to state. Furthermore, while discussion about Although this case study illustrates the patient’s worsen- goals and treatment options may be initiated by any trained ing performance status, it is unclear if Ms. C perceived the healthcare professional, full discussion and documentation changing situation. A correlation between actual health must be completed by a licensed physician in many states.22 status and perception of health status in patients with life- limiting health conditions has been shown to be discordant, ■ End-of-life care in the noncancer patient and this can infl uence end-of-life care and decision making. Although patients with chronic, life-limiting, noncancer One study revealed that frail patients diagnosed with COPD conditions experience greater symptoms and worsening were as likely to request life-sustaining treatments as patients quality of life as their disease progresses (even for the old- in good health and believed they would benefi t from CPR.27 est patients), care often focuses on treatment and disease It is possible that patients with chronic health conditions management without addressing advance care planning and adapt as their level of function and quality of life decline. decision making.1,23 This was apparent with Ms. C, who was When HCPs do not discuss or educate regarding the futility 80 years old, diagnosed with several serious conditions, and of life-sustaining treatments, patients are left to assume that despite worsening performance status and three hospitaliza- all is well and such treatments will improve their condition, tions, her care remained treatment focused. even though this is unlikely. Noncancer patient end-of-life care occurs closer to death NPs can assist patients in understanding life-sustaining than in the patient with cancer; a greater number of non- treatments, such as CPR, by educating them about the benefi ts

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and risks in their particular situation. It is important not to The prognosis and advance care planning should be dis- assume that a patient’s preference for one life-sustaining treat- cussed using terms the patient can understand. One study ment will include other interventions. Patients who have DNR showed that providers indicated they had discussions and orders may or may not want other interventions, such as antibi- believed they understood a patient’s wishes when patients otics, hydration, or hospitalization; the benefi t of each should be did not recall any discussion or held contrary wishes.27 discussed as opposed to the provider making an assumption.27 Patients and providers also differ with respect to whom As previously discussed, documentation should be com- and when discussion should take place. Although both pleted in the patient’s record and on the state-authorized form, patients and providers agree that providers should initiate if available. Using the MOLST form has been shown to improve the discussion, patients have indicated that the discussion other aspects of care at end of life. One study demonstrated should occur early in the disease course, whereas providers that greater knowledge and use of MOLST (by all healthcare preferred to leave discussion until later when treatment disciplines caring for long-term care patients) correlated with had failed.31 better symptom management, such as pain relief.28 One ex- Frequency of end-of-life discussions may be increasing planation could be that completing a MOLST form requires (at least in the hospital setting) as more medical residents signifi cant discussion, and in doing so, the provider gains a in training report witnessing such discussions.33 This may better understanding of what is important to the patient. be due to an increase in hospital-based palliative care pro- The time between diagnosis to death can be considered a grams, making end of life more visible and palliative care journey in chronic health conditions, albeit one with ups and a recognized subspecialty of medicine, both of which have downs. One study in a small group of patients with cancer re- occurred over the last decade.4,7 vealed that the shift from a curative approach to hospice care was sudden and unexpected; the focus of care moved from ■ Implication for practice curative to hospice seemingly from one day to the next.28,29 Although palliative care is frequently discussed as a multi- Entering hospice care was almost a relief for patients, since disciplinary approach, in reality, it is likely to be deferred to communication now moved from their disease and treatment the offi ce-based PCP (many of whom are NPs). Integrat- to them and their wishes. It became a time when they could ing palliative care using evidence-based indicators should fi nally communicate freely and directly. Similarly, in noncan- include patient/family discussions as well as collaboration cer patients, some discussion regarding prognosis occurred with specialist providers in regards to mutual goals. at intervals but failed to result in formal decision making NPs will need expanded scope of practice to include and advance directive completion.30 In addition, noncancer ordering privileges for hospice care and authorization to patients are more likely to receive care from several providers, complete advance care directives (such as the POLST or including specialist providers, none of whom may be comfort- MOLST) to fully integrate palliative care into primary care. able initiating end-of-life discussion.9 Earlier discussion al- This type of approach will benefi t the increasing population lows the provider better understanding of the patient’s wishes; of patients living with life-limiting illnesses whose end-of- this in turn may lessen the burden of illness on the patient.31 life needs have not been addressed to the same degree as the cancer patient. ■ Providers and end-of-life care REFERENCES When considering the case study, the optimistic view is 1. 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A concept analysis of palliative care in the United States. J Adv Nurs. 2004;46(2):152-161. noncancer conditions. Rather, exacerbations may alternate 5. Centers for Medicare and Medicaid Services. Medicare choices model. www. with symptom improvement, thereby making choices for the cms.gov/Newsroom/MediaReleaseDatabase/Fact-sheets/2014-Fact-sheets- items/2014-03-18.html. moment of discussion and decision making more diffi cult. 6. Van Mechelen W, Aertgeerts B, De Ceulaer K, et al. Defi ning the palliative Furthermore, the population at large still does not view HF care patient: a systematic review. Palliat Med. 2013;27(3):197-208. or COPD to be as serious as a cancer diagnosis or warrant 7. American Academy of Hospice and Palliative Medicine. History timeline. 2013. www.dipity.com/AAHPM/AAHPM-History. discussion of disease trajectory and advance planning.18 8. Hospice and Palliative Nurses Association (HPNA) Certifi cation 2015. Ironically, survival in some cancers has steadily improved.32 http://hpcc.advancingexpertcare.org/competence/certifi cations-offered. www.tnpj.com The Nurse Practitioner • March 2016 47

9. Slort W, Schweitzer BP, Blankenstein AH, et al. Perceived barriers and fa- 23. Wu P, Lorenz KA, Chodosh J. Advance care planning among the oldest old. cilitators for general practitioner-patient communication in palliative care: J Palliat Med. 2008;11(2):152-157. a systematic review. Palliat Med. 2011;25(6):613-629. 24. National Hospice and Palliative Care Organization. Facts and fi gures: hospice 10. Green E, Gardiner C, Gott M, Ingleton C. Exploring the extent of com- care in America. 2013. www.nhpco.org/search/node/facts%20and%20fi gures. munication surrounding transitions to palliative care in heart failure: the 25. Greer JA, Pirl WF, Jackson VA, et al. Effect of early palliative care on chemo- perspectives of health care professionals. J Palliat Care. 2011;27(2):107-116. therapy use and end-of-life care in patients with metastatic non-small-cell 11. National Hospice and Palliative Care Organization. Hospice facts and fi gures. lung cancer. J Clin Oncol. 2012;30(4):394-400. 2013. www.nhpco.org/press-room/press-releases/hospice-facts-and-fi gures. 26. Benzo R, Siemion W, Novotny P, et al. Factors to inform clinicians about the 12. American Academy of Nurse Practitioners. Medicare update. 2013. www. end of life in severe chronic obstructive pulmonary disease. J Pain Symptom aanp.org/legislation-regulation/federal-legislation/medicare/68-articles/326- Manage. 2013;46(4):491-499.e4. medicare-update. 27. Downey L, Au DH, Curtis JR, Engelberg RA. Life-sustaining treatment 13. Sepúlveda C, Marlin A, Yoshida T, Ullrich A. Palliative care: the World Health preferences: matches and mismatches between patients’ preferences and Organization’s global perspective. J Pain Symptom Manage. 2002;24(2):91-96. clinicians’ perceptions. J Pain Symptom Manage. 2013;46(1):9-19. 14. World Health Organization. Defi nition of palliative care. www.who.int/ 28. Vo H, Pekmezaris R, Guzik H, et al. Knowledge and attitudes of health care cancer/palliative/defi nition/en/. workers regarding MOLST (Medical Orders for Life-Sustaining Treatment) 15. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with implementation in long-term care facilities. Geriatr Nurs. 2011;32(1):58-62. metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742. 29. Wittenberg-Lyles E, Goldsmith J, Ragan S. The shift to early palliative care: 16. Whellan DJ, Goodlin SJ, Dickinson MG, et al. End-of-life care in patients a typology of illness journeys and the role of nursing. Clin J Oncol Nurs. with heart failure. J Card Fail. 2014;20(2):121-134. 2011;15(3):304-310. 17. National Consensus Project for Quality Palliative Care. Clinical practice 30. Fischer SM, Sauaia A, Min SJ, Kutner J. Advance directive discussions: lost in guidelines for quality palliative care. 2009. www.nationalconsensusproject. translation or lost opportunities? J Palliat Med. 2012;15(1):86-92. org/Guideline.pdf. 31. Johnston SC, Pfeifer MP, McNutt R. The discussion about advance directives. 18. Gott M, Gardiner C, Small N, et al. Barriers to advance care planning in Patient and physician opinions regarding when and how it should be con- chronic obstructive pulmonary disease. Palliat Med. 2009;23(7):642-648. ducted. End of Life Study Group. Arch Intern Med. 1995;155(10):1025-1030. 19. Kramer BJ, Auer C. Challenges to providing end-of-life care to low-income 32. Siegel R, Ma J, Zou Z, Jemal A. Cancer statistics, 2014. CA Cancer J Clin. elders with advanced chronic disease: lessons learned from a model pro- 2014;64(1):9-29. gram. Gerontologist. 2005;45(5):651-660. 33. Rhodes RL, Tindall K, Xuan L, Paulk ME, Halm EA. Communication about 20. Thoonsen B, Engels Y, van Rijswijk E, et al. Early identifi cation of palliative advance directives and end-of-life care options among internal medicine care patients in general practice: development of RADboud indicators for residents. Am J Hosp Palliat Care. 2015;32(3):262-268. PAlliative Care Needs (RADPAC). Br J Gen Pract. 2012;62(602):e625-e631. Ann Selena Cleary is an associate professor of nursing at Long Island Univer- 21. Shaw KL, Clifford C, Thomas K, Meehan H. Review: improving end-of-life sity, Harriet Rothkopf Heilbrunn School of Nursing, Brooklyn, N.Y. care: a critical review of the gold standards framework in primary care. Pal- liat Med. 2010;24(3):317-329. The author and planners have disclosed no potential confl icts of interest, fi nancial or otherwise. 22. Medical Orders for Life-Sustaining Treatment (MOLST). 2013. www.health. ny.gov/professionals/patients/patient_rights/molst/. DOI-10.1097/01.NPR.0000480588.01667.58

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