Penn Nursing JOSNR 2012 vol 5

Vol 5 Issue 1 2011-2012

Nursing Advocacy for Optimal Palliative Care of Patients with Advanced Cancer DEBRA A. KOSSMAN............................................................. 1-6

End-of-life Care for Individuals with Dementia

BRIANNA MORGAN.............................................................. 7-11

Including Adolescents and Young Adults in Decisions at the End-of-Life

REBECCA S. BERGER.............................................................. 12-18

Management of Chronic Non-malignant Pain in Nursing Homes Residents

THERESE Y. PARKER................................................................. 19- 24

jonsr

Journal of Nursing Student Research

Table of Contents Nursing Advocacy for Optimal Palliative Care of Patients with Advanced Cancer DEBRA A. KOSSMAN, p. 1-6

End-of-life Care for Individuals with Dementia BRIANNA MORGAN, p. 7-11

Including Adolescents and Young Adults in Decisions at the End-of-Life REBECCA S. BERGER, p. 12-18

Management of Chronic Non-malignant Pain in Nursing Homes Residents THERESE Y. PARKER, p.19-24

Kossman, D.

Nursing Advocacy for Optimal Palliative Care of Patients with Advanced Cancer Debra A. Kossman

The optimal care of patients suffering with progressive, life-limiting cancer is a major health care issue for many reasons. To start, the number of patients requiring palliative and end-of-life (EOL) care is growing as older Americans become an increasingly large proportion of the US population (e.g., Economist Intelligence Unit, 2010). The costs of health care delivered in the last weeks and months of life already comprise a disproportionate share of lifetime medical expenses (e.g., Duncan, 2010). Rising per-patient costs along with increasing numbers of patients are escalating the financial burden of terminally-ill care on individuals, families, and society. Improved technology, which contributes to rising costs, has increased the ability to prolong life without always enhancing its quality. For these reasons, society must ask whether life-sustaining measures should be used simply because they are available for use. As patients face death, preservation of human dignity and relief of suffering become priorities that guide comfort care.

Cancer continues to be the second leading cause of death in the US, after heart disease. According to the Centers for Disease Control (CDC), cancer deaths now exceed 567,000 annually and account for about a quarter of all deaths (“Leading causes of death”, 2009). Further, cancer (like many other diseases) challenges the optimal delivery of palliative care because the time from diagnosis with advanced disease to death can be relatively long and unpredictable. Difficulty predicting expected survival time, physicians’ reluctance to stop aggressive treatment, and patients’ and families’ denial of terminal disease contribute to delays in initiating palliative care (Larochelle, Rodriguez, Arnold, & Barnato, 2009; Salladay, 2009; Vivian, 2006).

Oncology and palliative care nurses serve as critical links between physicians on the one hand and patients and families on the other. These specialty nurses have the expertise to understand both the complex medical needs of cancer patients and the diverse psychological and spiritual needs of patients nearing the end of life. They also bear unique profesVol 5, Iss 1, 2012

sional responsibility for addressing all of these aspects of patient care. They aspire to give patients “a good death” (Dobbins, 2005) using the best medical, psychological, social, and spiritual interventions in ways that respect dying patients’ values, needs, and desires.

The purpose of this paper is to review selected research findings about obstacles to palliative care for patients with progressive cancer and discuss the role that oncology and palliative care nurses play in helping to remove these obstacles.

Selected Research Findings Perspectives of Oncology Nurses Moore, Callister, & Bond (2009) recently reported on the major obstacles to delivering EOL care as judged by oncology nurses. A random national sample of 1,000 members of the Oncology Nursing Society who had cared for inpatients with cancer and had experience in EOL care were invited to complete a questionnaire sent to them by mail. A total of 375 invitees were confirmed to be eligible and provided usable responses.

The questionnaire instrument, “Survey of Oncology Nurses’ Perceptions of End-of-Life Care,” was adapted from similar surveys with critical care and emergency nurses, with particular attention to revising it to reflect oncology EOL care. Oncology nurses were asked to rate the magnitude of 25 listed obstacles in giving EOL care to dying patients with cancer using a scale from 0 (not an obstacle) to 5 (extremely large obstacle). The smallest obstacle (“restrictive visiting hours”) received a mean (X) rating of 1.02; the largest obstacle received a rating of 3.56.

Eight of the top 10 obstacles related directly to family attitudes and behavior, including “angry” or “anxious family members” (X = 3.56 and 3.53, respectively); “family not accepting what the physician tells them”, or “being overly optimistic, about patients’ poor prognosis” (X = 3.55 and 3.44, respectively); “intrafamily fighting about whether to continue or stop aggressive treatment” (X = 3.31); and “family members not understanding the consequences of

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Kossman, D. continued aggressive treatments” (X = 3.30). The fifth biggest obstacle was “physicians who insist on aggressive care until patients are actively dying” (X = 3.47).

The only other types of obstacles ranking among the top ten for oncology nurses were “being called away from patients and families to help with a new admit or to help other nurses care for their patients” (X = 3.53) and “patients having pain that is difficult to control or alleviate” (X = 3.31).

In the same study, oncology nurses were asked to rate 24 supportive behavior items using a scale from 0 (not a help) to 5 (extremely large help). The top five supportive behaviors included “having family members accept that patients are dying” (X = 4.53) and “having the physicians involved agree about the direction of patients’ care” (X = 4.51). Nurses consider the biggest help to be “allowing family members adequate time to be alone with patients after death” (X = 4.58) and, related, “providing a peaceful bedside scene after patients die” (X = 4.50). “Having social work or palliative care staff as part of the patient care team” (X = 4.55) is the third biggest support among the survey items rated.

This survey documents the importance that oncology nurses place on having both physicians and families united in accepting a patient’s impending death and in foregoing aggressive care that would undermine rather than promote the relief of patient suffering. Of course, this study was conducted with nurses who care for dying inpatients, and much of palliative oncology care occurs in outpatient, home, hospice, and nursing home settings, where the dynamics of care and obstacles to it may be somewhat different.

Impact of In-home Palliative Care

Foregoing expensive, aggressive interventions is one strategy to slow or reverse rising costs associated with EOL care. Less obvious is whether in-home palliative care (IHPC) yields any savings and, even if it does, whether it in any way compromises patient satisfaction with care. A randomized controlled trial conducted by Brumley et al. (2007) evaluated the effects of IHPC versus usual and customary care on patient satisfaction with, outcomes of, and costs for the care of cancer patients with a life expectancy of 12 months or less.

Patients were drawn from two group-model, closed-panel, non-profit health maintenance organizations (HMOs). Eligible patients had visited an Vol 5, Iss 1, 2012

emergency department or hospital at least once in the year prior to study enrollment, scored 70% or less on the Palliative Performance Scale, and had a primary care physician who agreed that he or she would not be surprised if the patient died within the next year.

All patients in the study received usual care (e.g., home health services consistent with Medicare guidelines, acute care, primary care, and hospice care).

Patients randomized to the intervention arm of the study also received IHPC (e.g., pain management and other comfort care) modeled after hospice programs but modified to increase access and timely referrals to palliative care services. In particular, study patients were not required to have received a 6-month prognosis, did not have to forego curative care in order to receive IHPC, and were assigned a palliative physician who coordinated care, although patients also retained their primary care provider. The IHPC program used an interdisciplinary team approach, with the core care team consisting of the patient and family plus a trio of health care professionals (i.e., physician, nurse, and social worker) with expertise in symptom management and biopsychosocial intervention.

Data from patient interviews and utilization databases were analyzed for a total of 297 patients: 152 patients receiving usual care and 145 patients receiving IHPC. Satisfaction was measured using the Reid-Gundlach Satisfaction with Services instrument.

The study findings showed that the IHPC intervention significantly improved patient satisfaction at 30 days (odds ratio (OR) = 3.37; P = .006) and 90 days (OR = 3.37; P = .03) after enrollment; increased the likelihood of dying at home (OR = 2.20; P < .001); and significantly reduced the costs of care (adjusted mean cost for patients enrolled in palliative care was $12,670 vs. $20,222 for usual care; P = .03). On the other hand, there was a noteworthy (though not quite statistically significant) trend toward shorter survival in the IHPC. The authors speculated that the attention to patient preferences, family education, and encouragement of creation of end-of-life advance directives in the IHPC arm may have led to greater use of pain and symptom relief and comfort care over aggressive treatment to extend life.

The authors conclude that end-of-life care programs should not be limited to the last six months of survival and argue for a new “pre-hospice” palliative care benefit that would provide “a bridge between standard medical care and hospice care” (Brumley et

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Kossman, D. al., 2007, p. 999). In recognition of a growing body of evidence-based support for earlier palliative care, the American Society of Clinical Oncology (ASCO) recently issued an opinion recommending that all patients with metastatic non-small cell lung cancer be offered palliative care along with standard cancer therapy, beginning at the time of diagnosis (Narod, 2012). ASCO is also urging consideration of a similar approach for other metastatic cancers and for patients with a high burden of cancer-related symptoms.

Oncology nurses are frustrated when physicians fail to communicate the terminal nature of disease to patients clearly and persist with aggressive care despite the inability to cure (Beckstrand et al., 2009), and nurses must manage the complex emotions and incomplete understanding of family members.

Available literature provides evidence of beneficial effects of earlier comfort care. But what are patients’ perspectives? When patients are asked directly, what do they say matters most to them as death approaches?

Patient Aspirations and Awareness

Dobbins (2005) cites a classic study of chronically ill patients’ criteria for quality end-of-life care that identified the following five goals (Singer, Martin, & Kelner, 1999): to avoid inappropriately prolonged dying, to strengthen relationships with loved ones, to relieve the burden on their loves ones, to receive adequate pain and symptom management, and to achieve a sense of control. For health care professionals to work together with families to try to provide endof-life care that reaches these goals, patients need to understand and accept that they are nearing the end of their lives. This means that the start of optimal palliative care begins with some type of communication with patients about their prognosis.

When hospitalized critically ill patients receiving an initial consultation about palliative care are asked what is most important for them to achieve, the most common individual responses are going/being at home (32%) and pain and symptom management (22%). By contrast, less than 16% express the hope or desire to “recover,” “improve,” “fight,” or seek “cure.”

These results were obtained through a retrospective descriptive content analysis of the records for 215 patients treated at the University of Rochester Medical Center who received palliative care consultations in 2002 and 2003 (Quill et al., 2006). A nurse practitioner, resident, or medical student posed the question routinely to all palliative care candidates during an Vol 5, Iss 1, 2012

initial intake interview. Responses were independently categorized by four of the investigators, and then collectively grouped using an iterative analytic process until common categorization was achieved for a majority of the responses.

The study authors emphasize that if a hallmark of high-quality palliative care is meeting patient-specific goals, then (a) research that inquires directly into what patients want and (b) palliative care services consistent with those desires are essential. These authors do, however, describe a limitation of their research because of the vague nature of the question they posed – “What is most important for you to achieve?” – and the fact that it was posed to hospitalized patients.

Given the vague question, the inpatient setting almost certainly shaped the interpretation that patients gave to what would count as sensible answers. If patients had been asked the same question in outpatient or home care settings, the order of responses might have been different. Further, the authors note that the question deliberately did not ask patients what is important for them to achieve at the end of life because patients differ considerably in their understanding and acceptance of their terminal condition and their proximity to death.

A qualitative study of terminal patients and their relatives conducted in The Netherlands indicates how patient awareness that death is near affects timely requests for, access to, and delivery of care (Francke & Willems, 2005). A total of 19 terminal patients, and 23 relatives of deceased patients who were directly involved in providing patient care, were interviewed between 1998 and 2000. Criteria for inclusion consisted of the patient’s suffering from incurable cancer or other chronic terminal disorder, life expectancy less than six months, the mental and physical ability to participate, and, for relatives, the patient’s having died within the past year. The sample of patients and relatives represented both cancer and noncancer patients treated in a range of care settings (home, hospital, nursing home, or hospice). The semistructured interviews consisted of a set of open-ended questions and the responses were analyzed using an iterative process of identifying keywords that captured the themes of patient and family member responses.

The results indicate that patients who understood fairly early that death was imminent were more focused on maximizing the quality of their remaining time, were more likely to have given thought to what they did and did not want in the way of ongoing

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Kossman, D. tests and treatments, and were more likely to ask for specific interventions and assistance. By asking for care, these patients were more likely than less aware patients to remain at home, to avoid indignity, and to reduce the burden on their family. Further, the study indicated that patient awareness of the imminence of death was often modulated by the clarity with which physicians had communicated the incurable nature of their disease to patients.

Initiating Discussions about Prognosis and End-ofLife Issues The studies presented above are just a few of many that document the way in which both physicians and family members at times pursue or insist on care that is at odds with patient goals and nurses’ views of patients’ best interests in palliative care (e.g., Dobbins, 2007). They are but a few of the many that document that early understanding and acceptance of a terminal diagnosis, and education about palliative care options, improve patient satisfaction. The studies are among many that affirm the importance of identifying patient goals and preferences and using them to guide interventions designed to enhance the quality of patients’ remaining time.

Conversations with patients about their condition are essential, but when should such conversations occur, who should speak with patients, and what messages are important to communicate?

Clayton, Butow, Psych, & Tattersall (2005) conducted focus groups and interviews with 19 palliative care patients, 24 carers, and 22 palliative care health professionals in Sydney, Australia about these questions. Participants had been diagnosed with an incurable and progressive illness or were a carer for such a patient. Health care professionals had at least two years of experience working in palliative care.

Study participants were recruited to ensure diverse socioeconomic and cultural backgrounds, care settings, and professional disciplines.

As in the other qualitative research studies presented above, transcripts of the interviews were analyzed by developing categories using participants’ own language where possible to describe study responses. All investigators reviewed the final categories to ensure consistency.

The results of the study show little consensus among health care professionals, carers, or patients about communication timing. Some health care professionals urge early candid discussion of Vol 5, Iss 1, 2012

prognosis, others insist that health care professionals should tackle the topic only when patients unambiguously indicate a desire to know or when failing to do so would result in harm. Patients and carers tend to say that professionals should be guided by common sense and intuition about when to initiate discussion of end-of-life issues. There is clear agreement, though, that patients want to speak with a trusted, compassionate health care professional with whom patients have developed a rapport.

While this is only one study, and it consisted of only small numbers of participants, the study results nonetheless converge with the conclusions reached

by Parker et al. (2006) in their review of 123 studies addressing patient and caregiver preferences in communications about prognosis and end-of-life. It is important to tailor the timing, style, and content of communications to individual patients and caregivers with diverse cultural backgrounds, education levels, personalities, and coping abilities. As a result, health care professionals must be skilled at listening, speaking, and adapting to patients when navigating the difficult terrain of a terminal diagnosis (Dawson, 2008; Kristjanson, 2005). Further, patients’ and families’ information needs and goals change with “transitions from cure to comfort care, transitions related to loss, changes in care settings, and psychosocial and spiritual transitions” (Duggleby & Berry, 2005, p. 425).

Conclusions and Solutions

Studies indicate that nurses spend more time with patients at the end of life than any other profession (Wallace et al., 2009). Oncology nurses consider the biggest obstacles to optimal palliative and endof-life care to be (a) physicians who urge aggressive treatment longer than nurses believe best serves patients and (b) families that are unable to accept that patients are terminally ill. Patient preferences – whether expressed explicitly in advance directives/living wills or solicited by attentive, skilled health care professionals during ongoing delivery of care – often call for less emphasis on continued aggressive treatment and more on comfort measures and quality of life, and for doing the most possible to permit death at home. Thus, while physicians and families tend at least at times to pursue care that diverges from patient goals, nurses’ perspectives often converge with those of the patients they serve.

Oncology nurses are uniquely positioned to be advocates for initiation of palliative care for patients

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Kossman, D. with progressive disease much earlier than typically occurs today (Skalla, 2006). They possess the knowledge and skills needed to address the complex end-oflife problems that cancer patients can experience. The nursing profession also has a defining commitment to the “the protection, promotion, and optimization of health and abilities, prevention of illness and injury, alleviation of suffering through the diagnosis and treatment of human response, and advocacy in the care of individuals, families, communities, and populations” (“ANA’s definition of nursing”, 2003).

Nurses see firsthand how well-intentioned actions by physicians and families can result in the pursuit of ineffective options that increase cost, prolong dying, and reduce quality of life. Nurses can speak authoritatively about the avoidable suffering and loss of dignity that can result from deferred palliative care.

Despite the best of our current knowledge and efforts, some disease is incurable, we are all going to die, and there is a peace that comes from being supported with compassion and comfort care as that unavoidable day approaches.

Of course, dramatic strides have been made in recent decades in the ability to cure and delay recurrence of some cancers (e.g., testicular cancer, nonHodgkin’s lymphoma, childhood leukemias) and to significantly prolong periods of disease-free survival in patients with metastatic disease (e.g., HER2-positive metastatic breast cancer, chronic myelogenous leukemia, multiple myeloma, metastatic prostate cancer). On the other hand, for diseases such as metastatic pancreatic adenocarcinoma, lung cancers, and ovarian cancer, cure is not possible. Further, treatments are often expensive and toxic, with only some patients reaping any clinical benefit from attempts at aggressive therapy.

Whether to pursue aggressive treatment remains unclear for many metastatic diseases, and in many cases there are no right or wrong choices. It is clear, though, that full disclosure of the benefits and risks of treatment, and full engagement of patients in decision-making processes, are essential if patients are to weigh the consequences of therapy and be afforded their rights of autonomy and self-determination.

Nurses can be leaders toward remedying this breach.

As Dobbins declares, “Nurses have already reformed the way babies come into this world. Now it’s time for us to help reform the way people depart from this world” (Dobbins, 2005, p. 45).

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References ANA’s definition of nursing. (2003) Retrieved October 19, 2009 http://www.nursingworld.org/EspeciallyForYou/StudentNurses.aspx Beckstrand, R., Moore, J., Callister, L., & Bond, A. (2009). Oncology nurses’ perceptions of obstacles and supportive behaviors at the end of life.

Oncology Nursing Forum, 36(4), 446-453.

Brumley, R., Enguidanos, S., Jamison, P., Seitz, R., Morgenstern, N., Saito, S., et al. (2007). Increased satisfaction with care and lower costs: Results of a randomized trial of in-home palliative care. Journal of the American Geriatrics Society, 55(7), 993-1000.

Clayton, J., Butow, P., & Tattersall, M. (2005). When and how to initiate discussion about prognosis and end-of-life issues with terminally ill patients.

Journal of Pain & Symptom Management, 30(2), 132-144.

Dawson, K. (2008). Palliative care for critically ill older adults: Dimensions of nursing advocacy.

Critical Care Nursing Quarterly, 31(1), 19-23.

Dobbins, E. (2005). Helping your patient to a “good death”. Nursing, 35(2), 43-45.

Dobbins, E. (2007). End-of-life decisions: Influence of advance directives on patient care. Journal of Gerontological Nursing, 33(10), 50-56.

Duggleby, W., & Berry, P. (2005). Transitions and shifting goals of care for palliative patients and their families. Clinical Journal of Oncology Nursing, 9(4), 425.

Duncan, D. (March 9, 2010) What price for medical miracles? High costs at end of life still part of national health debate. The Fiscal Times.

Retrieved on April 15, 2012 http://www.kaiserhealthnews.org/Stories/2010/March/09/fiscaltimes-end-of-life.aspx Economist Intelligence Unit. (2010). The quality of death: Ranking end-of-life care across the world.

Retrieved on April 15, 2012 http://graphics.eiu. com/upload/QOD_main_final_edition_Jul12_toprint.pdf Francke, A., & Willems, D. (2005). Terminal patients’ awareness of impending death: The impact upon requesting adequate care. Cancer Nursing, 28(3), 241-247.

Kristjanson, L. (2005). Directions in palliative care nursing research: impeccable care, timing, and complexity. Canadian Journal of Nursing Research, 37(2), 13-20.

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Kossman, D. Larochelle, M., Rodriguez, K., Arnold, R., & Barnato, A. (2009). Hospital staff attributions of the causes of physician variation in end-of-life treatment intensity. Palliative Medicine, 23(5), 460-470.

Leading causes of death. (2009) Retrieved on April 15, 2012 from http://www.cdc.gov/nchs/fastats/ lcod.htm Narod, A. (February 6, 2012) New ASCO clinical guidance recommends expanded use of palliative care for patients with metastatic cancer and high symptom burden. Retrieved on April 16, 2012 http://www.asco.org/ASCOv2/Press+Center/ Latest+News+Releases/ASCO+News/New+ASC O+Clinical+Guidance+Recommends+Expanded +Use+of+Palliative+Care+for+Patients+with+M etastatic+Cancer+and+High+Symptom+Burden Parker, S., Clayton, J., Hancock, K., Walder, S., Butow, P., Carrick, S., â&#x20AC;Ś Tattersall, M.H.N. (2007). A systematic review of prognostic/ end-of-life communication with adults in the advanced stages of a life-limiting illness: Patient/ caregiver preferences for the content, style, and timing of information. Journal of Pain & Symptom Management, 34(1), 81-93.

Quill, T., Norton, S., Shah, M., Lam, Y., Fridd, C., & Buckley, M. (2006). What is most important for you to achieve?: An analysis of patient responses when receiving palliative care consultation.

Journal of Palliative Medicine, 9(2), 382-388.

Salladay, S. (2009). Ethical problems. Patient advocacy: Palliative care conflict. Nursing, 39(4), 15-16.

Singer, P., Martin, D., & Kelner, M. (1999). Quality end-of-life care: Patientsâ&#x20AC;&#x2122; perspectives. JAMA. 281(2):163-168.

Skalla, K. (2006). Blended role advanced practice nursing in palliative care of the oncology patient.

Journal of Hospice & Palliative Nursing, 8(3), 155-163.

Vivian, R. (2006). Truth telling in palliative care nursing: The dilemmas of collusion. International Journal of Palliative Nursing, 12(7), 341-348.

Wallace, M., Grossman, S., Campbell, S., Robert, T., Lange, J., & Shea, J. (2007). Integration of end-of-life care content in undergraduate nursing curricula: Student knowledge and perceptions.

Journal of Professional Nursing, 25(1), 50-56.

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End-of-life Care for Individuals with Dementia Brianna Morgan Abstract

End-of-life care for individuals with dementia can be complicated and difficult for clinicians, families and the patient. This paper examines the current literature on end-of-life practices for individuals with dementia and discusses emerging trends to help inform clinicians about factors that influence end-of-life care for individuals with dementia. Research articles highlight nursing home care, hospice and palliative care, and decision-making as major themes influencing end-of-life care, and suggest recommendations for clinicians in improving practice in these areas.

End-of-life decisions are difficult for many families facing the death of a loved one. Dementia creates additional burden in an already complex decision-making process. Instead of making end-of-life decisions with the explicit consent of their loved one, individuals and families must make decisions for a person who is drastically different than the person they cared for initially. Dementia is a challenging disease to face during the end of a patient’s life for many reasons, including: prolonged and unpredictable course of illness, intensity of care required, and the presence of behavioral disturbances (Givens, Lopez, Mazor, & Mitchell, 2011).

Dementia is an umbrella term used to describe the cognitive changes that stem from several different underlying disorders affecting speech, behavior, movement, and of course, memory (Craig, Meiland, Passmore, & Dröes, 2010). Because dementia has multiple causes, estimates for how many individuals are living with dementia are difficult to ascertain. The 2011 Alzheimer’s Association Report estimates that some 5.4 million Americans currently live with Alzheimer’s disease (Alzheimers Association, 2011). Research suggests that by 2050, there will be more than 13 million Americans living with dementia (Elliott, Gessert, & Peden-McAlpine, 2009).

Although, dementia manifests itself differently across, and even within, each of the aforementioned disorders, current research in end-of-life care focuses on the group as a whole (Craig et al., 2010). This paper examines the current literature on successful end-of-life practices for individuals with dementia, as well as pointing out areas of care that may need improvement. Emerging trends in research and practice helps to inform clinicians about factors that influence end-of-life care for individuals with dementia.

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Methods

Eleven scholarly articles surveying the current trends in end-of-life care for individuals with dementia were reviewed. Search terms included: “End-of-life,” “dementia,” “nursing home,” “advanced directive,” “palliative care,” “hospice care” and/or “decision making” using PubMed. All identified articles are research-based, published within the last five years, and relevant to the topic of end-of-life care of individuals with dementia.

Results Nursing Home Care

Nursing homes are very common settings of care for individuals with dementia; 90% of individuals with dementia are cared for in a nursing home and 70% of those individuals die there (Givens et al., 2011). Although nursing homes have become the primary site of care for patients with advanced dementia, families and caregivers often report dissatisfaction with the care provided in these institutions (Engel, Kiely, & Mitchell, 2006). Researchers are working to determine the factors that affect the quality of care of nursing home residents and their families (Engel et al., 2006).

Research suggests that nursing home admission is a locus of stress for residents and their families (Givens et al., 2011). Several factors mitigate this stress. For example, Engel et al. (2006) found that residents and their families experience greater satisfaction when more time is spent discussing advanced directives upon admission. In addition, increasing emotional support and education regarding prognosis can decrease stress during admission (Givens et al., 2011). Thus, providing better communication increases caregiver satisfaction and decreases stress related to nursing home admission (Givens et al., 2011).

The quality of patient care is another factor af-

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Morgan, B. fecting satisfaction with nursing home care at the endof-life, especially when, as Givens et al. (2011) found, families report patient care is inadequate. Specifically, surrogates who choose feeding tubes are less satisfied with their care, and the majority of proxies regret their decision to insert a feeding tube after the fact (Engel et al., 2006). Engel et al. (2006) suggest that better pain and comfort measures correlate with greater satisfaction.

Additional research also identifies specific areas of care that could be improved to increase satisfaction with patient care. Research has shown that nurses’ role in feeding decisions in nursing homes is ambiguous. Nurses feel that they lack sufficient knowledge about the risks and benefits of feeding tubes, and nurses are often unsure about their moral obligations in feeding decisions (Lopez, Amella, Mitchell, & Strumpf, 2010). Engel et al. (2006) contends that specialized care units with staff specifically trained in the care of persons with advanced dementia increases resident and family satisfaction with the patient management.

Palliative and Hospice Care

Hospice and palliative facilities allow individuals to “die with dignity” by providing “medical care, pain management, and emotional spiritual support for people who are dying” as well as bereavement support for their families (Alzheimer’s Association, 2011). Although palliative and hospice care models were initially designed to serve patients with advanced cancer, individuals with dementia can also benefit from these services (Torke et al., 2010). Torke et al.

(2010) conducted interviews with 80 staff members of hospice care facilities, and noted that 96% of interviewees agreed with the statement “I think that palliative care is effective in patients with dementia;” however, no rationale for this finding was provided (Teno et al., 2011). Teno et al. (2011) found that families of persons with dementia who received hospice and palliative care services reported fewer unmet needs and concerns with quality of care, rated the quality of care higher, and indicated better quality of dying than those without hospice services.

Further research demonstrates areas of need for individuals with dementia that could be improved by adding hospice or palliative care (Engel et al., 2006; Torke et al., 2010). Nursing home residents with advanced dementia are less likely to have advanced directives and more likely to undergo aggressive inVol 5, Iss 1, 2012

terventions at end-of-life than terminal cancer patients (Engel et al., 2006). Torke et al. (2010) also concur that caregivers of individuals with dementia have a high level of need, including need for respite services, assistance with caregiver burden and behavioral symptoms (Torke et al., 2010).

Despite the purported benefits of hospice care, only 21% of hospice care institutions enroll patients with a primary diagnosis of dementia (Torke et al., 2010). Although underutilized in the dementia population, use of hospice care is increasing (National Hospice and Palliative Care Organization [NHPCO], 2011). In 2010, thirteen percent of hospice admissions come from individuals with dementia (NPHO, 2011). This figure has increased two percent from the previous year, which was the second largest increase in admissions rates among primary diagnoses groups (NPHO, 2011). Similarly, there is low utilization of palliative care services by individuals with dementia (Birch & Draper, 2008).

Research highlights several barriers for individuals with dementia to receiving hospice and palliative care. First, current reimbursement mechanisms for palliative and hospice care providers present a huge obstacle to enrolling patients for these services (Torke et al., 2010). Torke et al. (2010) attribute the lack of awareness of hospice and palliative care services by both the families and referring providers as another major barrier to access of services by individuals with dementia. These authors recommend focusing educational efforts on referring primary care providers and families rather than on palliative care providers (Torke et al., 2010).

Even for those who overcome roadblocks, hospice and palliative services that are available are not often ideal for patients suffering from dementia.

Among 240 executive directors of hospice programs interviewed, 96% agreed that “patients with dementia often have unmet needs for palliative care,” and 94% agreed that patients with dementia have untreated pain (Torke et al., 2010). To date, there is limited research that focuses on how to improve hospice and palliative care for dementia patients at the end-of-life.

Decision Making

When it comes to actually making decisions about end-of-life care, individuals with dementia are often excluded from the process. Research supports that patient’s participation in end-of-life decisions depends on their cognitive status (Lindstrom, Gaston-

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Johansson, & Danielson, 2010). An analysis of documentation from deceased patients across numerous municipalities in Sweden revealed that patients with dementia had very little information in their medical records about end-of-life care, while patients without dementia had significantly more information about their wishes and symptoms (Lindstrom et al., 2010).

In order to preserve patient autonomy and improve end-of-life care for individuals with dementia, investigators recommend finding innovative ways to include these patients in their own care but did not expand on how to accomplish this (Lindstrom et al., 2010).

When individuals with dementia are not able to participate in their own end-of-life decision-making, the burden falls on families and caregivers. Black et al. (2009) conducted interviews with surrogate decision makers to determine how individuals made end-of-life decisions for their loved ones. The results indicated that 59% of individuals had completed an advanced directive, 56% discussed preferences for end-of-life care and 38% had done both (Black et al., 2009). However, some individuals had done neither and instead relied on “knowing the person and his/her values” or “information obtained from others” (Black et al., 2009).

Some researchers were able to demonstrate that families used elders’ life stories to frame their decisions for care when the individual’s wishes were not known (Elliott, Gessert, & Peden-McAlpine, 2009). It was suggested that in the absence of a patient’s explicit directives, it is acceptable for healthcare providers to use “narrative-ethics” as a method for determining a family’s perspectives and priorities in end-of-life decision-making (Elliot et al., 2009). Black et al.

(2009) urge health care providers to assist patients and families by encouraging advanced care planning, discussion of dying, helping individuals to identify goals for the end-of-life, and providing information to support treatment decisions consistent with the patient’s wishes.

Conflict can occur when making end-of-life decisions for a loved one. Elliott, Gessert, & PedenMcAlpine (2007) interviewed family members to determine the causes of conflict in end-of-life decision-making, and identified that less conflict occurs when one person or a couple assumes a primary role in decision-making (Elliot et al., 2007). Decisions about transitions, such as entrance into nursing home care, often create a source of conflict for families (Elliott et al., 2007). When this type of conflict existed, managVol 5, Iss 1, 2012

Morgan, B. ing the conflict became the focus for the family rather than the care of the individual with dementia (Elliott et al., 2007).

The well-being of the surrogate decision maker also affects the care of end-of-life dementia patients.

Vig and colleagues (2007) interviewed fifty surrogates about factors that helped and hampered how they made medical decisions for a loved one. Four general factors that influenced the outcomes of the surrogates’ decisions were discussed: “surrogates’ characteristics and life circumstances,” “surrogate social networks,” “surrogate-patient relationships,” and “communication and surrogate-clinician communication and relationship” (Vig et al., 2007). Surrogates’ characteristics and life circumstances that affected their well-being included: previous surrogate decision-making, successful coping strategies, support from outside sources, proximity to the individual with dementia, and finances (Vig et al., 2007). Surrogates relied on social networks to validate their choices, and found these helpful in their decision-making processes (Vig et al., 2007). Characteristics of surrogate-patient relationships and communication seemed to also influence surrogates’ decision-making and well-being, and these included understanding and knowing the patient’s medical condition needs (Vig et al., 2007). Finally, the surrogate-clinician relationship played an important role in surrogate decision-making. When interviewed about end-of-life experiences, surrogates reported that availability of the clinician to answer questions and offer support, getting frank information, making treatment recommendations and receiving reassurance about decisions improved their experience (Vig et al., 2007). Additionally, the involvement of too many clinicians in patient’s care hindered surrogates’ decisionmaking ability (Vig et al., 2007).

Discussion

Health care providers should be knowledgeable of current research trends about care for individuals with dementia and consider existing research to inform and assist patients and their families with endof-life decisions. This review highlights nursing home care, hospice and palliative care, and decision-making processes as major themes influencing end-of-life care for patients with dementia.

Given that nursing homes have become more important in end-of-life care for individuals with dementia (Givens et al., 2011), clinicians should ensure that these services are used appropriately and effec-

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tively. The transition into a nursing home can be a stressful time for an individual with dementia and their caregivers (Givens et al., 2011). As such, clinicians should provide emotional support for both the patient and caregivers, and initiate discussions about goals of care upon admission, including the discussion of advanced directives. While progress is currently being made to ensure accessible and reimbursed services for individuals with dementia, improvements in end-oflife care in nursing homes are still needed (Engel et al., 2006). When possible, specialized dementia units should be the preferred placement for individuals with dementia residing in a nursing home (Engel et al., 2006). To be advocates for patients and their caregivers, nurses should be more knowledge about nutritional support (e.g., enteral feeding practices), and play a more proactive role in facilitating feeding decisions (Lopez et al., 2010).

Hospice and palliative care provide viable options at the end-of-life for patients with dementia.

These options for care should be discussed with caregivers and families earlier in the course of a patient’s illness (Alzheimer’s Association, 2011; Torke et al., 2010). It is also critical for healthcare providers to decrease the barriers to end-of-life care by increasing their knowledge of hospice and palliative care service and by managing the high level of caregiver stress associated with the care of patients with dementia, (Torke et al., 2010). Researchers and health care providers should also work toward improving existing hospice and palliative care services for individuals with dementia (Torke et al., 2010). Research must focus on how to deliver more comprehensive hospice services to individuals with dementia, and effective ways to relieve symptoms associated with dementia and improve the quality of life in all health care settings.

When patients cannot participate in their end-of-life care decisions, families and caregivers must step into a decision-making role by relying on advanced directives, previous discussions about endof-life; in the absence these guides, decision-makers must use former, life stories, and third-party information (Lindstrom et al., 2010; Elliott et al., 2009; Black et al., 2009). Health care providers should assist individuals to express their thoughts about end-of-life preferences for care by beginning conversations early at the time of diagnosis, by involving family members and caregivers, and by completing advanced directives (Elliott et al., 2009; Black et al., 2009). When family Vol 5, Iss 1, 2012

Morgan, B. members are involved, health care providers should help avoid conflict by suggesting that one person in the family assume the role of the primary decision maker. Additionally, healthcare providers should recognize that transitions, such as nursing home admission, can often become a source of family conflict and should be prepared to manage caregiver needs at crucial points in the decision-making process (Elliott et al., 2007).

It is also important for clinicians to ensure that the primary decision maker receives adequate support.

Supporting surrogate decision makers involves assessing their current emotional or mental health status, and most importantly for the clinician, maintaining a positive surrogate-clinician relationship (Vig et al., 2007). There are several factors that affect a positive surrogate-clinician relationship. Clinicians must be available to answer questions and offer support, provide the surrogate with frank and accurate medical information about the individual with dementia, make treatment recommendations, and provide reassurance to the surrogate regarding their decisions (Vig et al., 2007). Since it has been shown that having too many clinicians involved in the care of a patient may cause conflicts (Vig et al., 2007), one case manager or primary identified health care provider should be assigned to work with a surrogate in these cases.

Conclusion

Overall, more research is needed to enhance the understanding of the factors that affect end-of-life care for individuals with dementia and their families.

Researchers should focus on improving nursing home management, increasing access and quality of palliative care, and improving models to assist patients and families in decision-making at the end-of-life.

References Alzheimer’s Association. (2011). Alzheimer’s Association Report: Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 7, 208-244. doi:10.1016/j.jalz.2011.02.004 Birch, D., & Draper, J. (2008). A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia. Journal of Clinical Nursing. 17(9), 1144-63. doi: 10.1111/j.1365-2702.2007.02220.x Black, B.S., Fogarty, L.A., Phillips, H., Finucane, T., Loreck, D.J., Baker, A., … Rabins, P.V. (2009).

Surrogate decision makers understanding of de-

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Morgan, B. mentia patients’ prior wishes for end-of-life care.

Journal of Aging and Health. 21(4), 627-651. doi: 10.1177/0898264309333316 Craig, D., Meiland, F., Passmore, P., & Dröes, R.M. (2010). Prevalence and clinical features of dementia. In M.D. Mulvenna & C.D. Nugent (eds.), Supporting people with dementia using pervasive health technologies (pp. 15-23). London, England: Springer-Verlag. doi: 10.1007/978-184882-551-2_2 Elliott, B.A., Gessert C.E., & Penden-McAlpine, C. (2007). Decision making on behalf of elders with advanced cognitive impairment: Family transitions. Alzheimer’s Disease and Associated Disorders, 21(1), 49-54. doi: 10.1097/ WAD.0b013e318030840a Elliott, B.A., Gessert C.E., & Penden-McAlpine, C. (2009). Family decision-making in advanced dementia: Narrative and ethics. Scandinavian Journal of Caring Sciences. 2, 251-258. doi: 10.1111/j.1471-6712.2008.00613.x Engel, S.E., Kiely, D.K., & Mitchell, S.L. (2006). Satisfaction with end-of-life care for nursing home residents with advanced dementia. Journal of the American Geriatrics Society, 54(10), 1567-1572. doi: 10.1111/j.1532-5415.2006.00900.x Givens, J.L., Lopez, R.P., Mazor, K.M., & Mitchell, S.L. (2011). Sources of stress for family members of nursing home residents with advanced dementia. Alzheimer’s Disease and Associated Disorders, 00(00).

Lindstrom, I., Gaston-Johansson, F., & Danielson, E. (2010). Patients’ participation in end-of-life care: relations to different variables as documents in the patients’ records. Palliative and Supportive Care, 8, 247-253. doi: 10.1017/ S1478951510000441 Lopez, R.P., Amella, E.J., Mitchell, S.L., & Strumpf, N.E. (2010). Nurses’ perspectives on feeding decisions for nursing home residents with advanced dementia. Journal of Clinical Nursing, 19, 632638. doi: 10.1111/j.1365-2702.2009.03108.x National Hospice and Palliative Care Organization (2012). Facts and Figures: Hospice care in America. Retrieved from http://www.nhpco.org/files/ public/statistics_research/2011_facts_figures.pdf Teno, J.M., Gozalo, P.L., Lee, I.C., Kuo, S., Spence, C., Connor, S.R., & Casarett, D.J. (2011). Does hospice improve quality of care for persons dying from dementia? Journal of the AmeriVol 5, Iss 1, 2012

can Geriatrics Society. 59(8), 1531-1536. doi: 10.1111/j.1532-5415.2011.03505.x Torke, A.M., Holtz, L.R., Hui, S., Castellucci, P., Connor, S., Eaton, M.A., & Sachs, G. (2010). Palliative care for patients with dementia: A national survey. Journal of the American Geriatrics Society, 58(11), 2114-2121. doi: 10.1111/j.15325415.2010.03141.x Vig, E.K., Straks, H., Taylor, J.S., Hopley, E.K., & Fryer-Edwards, K. (2007). Surviving surrogate decision-making: what helps and hampers the experience of making medical decisions for others. Journal of General Internal Medicine, 22(9), 1274-1279. doi: 10.1007/s11606-007-0252-y

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Including Adolescents and Young Adults in Decisions at the End-ofLife Rebecca S. Berger Abstract

Over 3000 young people die of chronic illnesses annually in the United States. Health care providers often struggle to include these patients in end-of-life planning. The purpose of this inquiry is to examine the current literature addressing the inclusion of adolescents and young adults in decision-making at the end-oflife. A systematic search of the electronic databases PubMed, Scopus, CINAHL, ISI, and Cochrane revealed 9 articles relevant to this topic. The results show that adolescents and young adults want to be included in endof-life decisions and often have similar values as their parents and providers when making these decisions. The major limitations are the limited population sample of the studies, in terms of size and patient characteristics, and inconsistencies with the ages of participants in the studies. Ideas for further research, in addition to implications for clinical practice will be discussed in this paper.

Adolescence is a time when young people exert their autonomy, attempt to form their own identity and independence, and develop a greater sense of their sexuality that occurs from hormonal and physical changes. Adolescents may also view death in a more adult-like manner by understanding that it is a permanent and universal part of life. Adolescents who face their own mortality as a consequence of life-threatening illnesses have an even greater depth for appreciation of this universal experience at an even earlier age than their healthy peers (Freyer, 2004).

Annually in the United States, over 3,000 adolescents die from chronic illnesses, including cancer, metabolic disorders, renal disease, and heart disease (Freyer, 2004). Despite the possibility of death from life-threatening illnesses, health care providers often delay talking to young patients about dying (Lyon et al., 2009; Wiener et al., 2008). Research shows, however, that young people want to talk about their preferences and values at the end-of-life (Lyon et al., 2009). In fact, research demonstrates that by the time children reach adolescence, they are capable of having mature discussions and processing information with a level of thinking similar to an adult (Zinner, 2009).

Recognition of this desire and maturity warrants the inclusion of adolescents in discussions about end-oflife care with the onus on health care providers to find effective ways to start these discussions and engage adolescents in need to consider how to incorporate them into the decision-making processes for determining preferences for treatment options.

In the United States, people generally are deemed to be legally competent at age 18 years, Vol 5, Iss 1, 2012

and have autonomy to consent to or refuse medical care. Those under age 18, however, generally cannot legally make independent decisions, which present unique challenges in giving them the authority to selfdetermine the course of medical care. Adolescents younger than 18 who are facing death from progressive diseases are often educated about their illnesses and have preferences for end-of-life treatment (Freyer, 2004). In addition, there are laws in most states in the US that allow minors in certain circumstances to make their own medical decisions, such as those who have gone to college, those who are pregnant, and those seeking care for sexually transmitted illnesses or substance abuse (Freyer, 2004; Zinner, 2009).

Although there are no legal requirements imposed for including minors in end-of-life decisions, there is broad consensus among pediatric health professionals, lawyers, and ethicists that adolescents 14 and older, and maybe as young as 10, are functionally capable to make their wishes known and to actively participate in medical decisions at the end-of-life (Freyer, 2004).

Older adolescents and young adults face the same challenges with end-of-life decisions (Wiener et al., 2008). Adolescents and young adults with terminal illnesses may mature socially slower than their healthy peers in some ways, due to issues such as parental overprotection, social isolation leading to low self esteem, and delays in forming sexual relationships (Freyer, 2004). The fact remains that much of the research addressing end- of- life decisions by adolescents includes those up until 21 years of age and older taking into account that similar challenges exist for both older adolescents and young adults compared

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Berger, R.S. to their younger peers.

This paper addresses the following question: How can health care providers include adolescents and young adults in decision-making at the end-of-life?

This question will be answered through a thorough evaluation of the current literature on the topic.

Methods

The literature review was structured to find research articles about adolescents and young adults and their involvement in end-of-life decision-making.

Five online databases, PubMed, Cumulative Index for Nursing and the Allied Health (CINAHL), ISI Web of Knowledge, Cochrane Library, and Scopus were systematically searched for this paper. Six searches were performed in PubMed using Mesh search terms such as “adolescents and end-of-life decisions” (114 articles), “teenagers and end-of-life decisions” (114 articles), “young adults and end-of-life decisions” (47 articles), “adolescents and advance directives” (165 articles), “teenagers and advance directives” (165 articles), and “young adults and advance directives” (46 articles). Due to the small number of studies available for this new topic of research, articles were included since the year 2000. Limits placed on all of the searches were 1) English language; 2) human research; 3) research articles since 2000; and 4) ages 13-18 and 19-24. Results were excluded if they were not research articles, if they were not on topic, if they were not relevant to the United States, if they were not specific to adolescents and young adults, or if they only discussed parents’ participation in decision-making. Seven research articles were identified that met all inclusion criteria from the above searches. Similar searches were performed using CINAHL, ISI Web of Knowledge, and Cochrane Library databases, which resulted in no additional relevant articles.

Search terms within Scopus included end-oflife decisions and adolescents. Limits placed on the search included 1) research articles since 2000; and 2) nursing and medical journals only. 212 articles were found from the search. Articles were excluded if they did not meet inclusion criteria or if they were duplicates. Two additional research articles were identified. Finally, the abstracts of all reference lists of the articles to be included in the manuscript were hand reviewed to identify additional relevant studies. No research articles were added from this search. In total, nine research publications met all of the eligibility criteria for inclusion into this paper. Numerous review Vol 5, Iss 1, 2012

articles were used to expand the literature for understanding end-of-life decision-making in adolescents and young adults.

A table of evidence presents all nine research articles, which reports the purpose, study design, population, setting, findings, strength and quality, and major limitations of the studies. Based on the available evidence, major themes were extracted to answer the inquiry question of interest.

Results

The results of the literature search identified several important opportunities and resources to engage adolescents and young adults in decision-making around treatment options at the end-of-life. First, the use of advance directives and other end-of-life planning documents provide the structure for initiating conversations regarding a patient’s wishes to continue or forgo life-prolonging therapy. Second, the comfort level and interest of the patient related to discussions about end-of-life must be assessed, and issues should be raised and addressed that are of greatest concern to adolescents and young adults. Third, patient refusal or lack of acceptance of life prolonging treatments must be respected and incorporated into plans of care.

Lastly, congruence between the preferences of patients and their parents and health care providers must be considered in reaching a mutually goal for plans of care.

Advanced planning

Advance directives (ADs) are legal documents that are executed at a time when a person is deemed mentally competent to express the desires and wishes for future care. ADs are honored even when individuals are no longer considered mentally capable of making informed decisions about their health care. For adolescents under 18, there is currently no such legally binding document that allows them to make their wishes and desires for future care known. The concept of the AD is an important one, even with minor adolescents considered mature enough to be included in medical decisions (McAliley, Hudson-Barr, Gunning, & Rowbottom, 2000). However, opportunities to legitimize their wishes for future treatments are limited.

Several studies have examined whether adolescents and young adults feel ADs and other advanced planning documents are necessary and helpful. In one study involving interviews with healthy and ill teenag-

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Berger, R.S. ers about ADs, McAliley et al. (2000) found that the majority of participants think that ADs are important for people their age who have chronic conditions, life threatening illnesses, and those undergoing risky surgery. The majority of participants also thought that it was important for someone of their age and health to have ADs. Wiener et al. (2008) explored whether adolescents and young adults find it helpful to have Five Wishes©, an advanced planning document usually used by adults, available to them to discuss end-of-life decisions. Most (95%) reported that the document would be helpful for them, and 90% believed that it would be helpful to individuals their own age with a serious illness to make their wishes known.

Studies that explore adolescent and young adult decision-making find that young patients are able to verbalize their preferences in meaningful ways to inform parents and health care professionals of their desires to have certain therapies to sustain life. For example, McAliley et al. (2000) presented participants with a scenario of a patient in a coma and asked them what they would want done for themselves if they were in the same situation. The majority of respondents chose major surgery, antibiotics, intravenous (IV) fluids, and a feeding tube, while less than half opted for a ventilator and cardiopulmonary resuscitation (CPR) life sustaining interventions. Hinds et al. (2005) interviewed 20 adolescents about a recent end-of-life decision they had made, either enrolling on a phase I trial, signing a do not resuscitate (DNR) order, or initiating palliative symptom management.

All but two of the participants were able to verbalize the options that were offered to them when making the decision, and participants were able to articulate their thought processes for making the decision and weighing the likely outcomes.

Comfort level of patient

Health care providers frequently report feeling uncomfortable discussing end-of-life issues with young people, for fear of causing anxiety and diminishing hope (Lyon et al., 2009; Lyon, McCabe, Patel, & D’Angelo, 2004; Wiener et al. 2008). However, studies of the patients themselves indicate that they are actually comfortable having these discussions about their preferences at the end-of-life, and want to be included in such decisions.

McAliley et al. (2000) found that most teenagers interviewed felt comfortable talking to the researchers about end-of-life decision-making. Overall, Vol 5, Iss 1, 2012

none of the participants interviewed by Wiener et al.

(2008) perceived the overall discussion about Five Wishes© to be stressful, although there were certain items that some participants did find stressful, such as the wish for specific type of life support treatments given. Overall, participants did not feel stressed enough to stop the interview, instead they offered suggestions as to how to make the question easier for them understand.

In several of the studies, participants reported that they wanted to be included in end-of-life decisions. Lyon et al. (2004) interviewed both healthy and chronically ill adolescents to determine if differences exist between how they view end-of-life issues. The majority of these adolescents stated that they would want to share in decision-making if they were in a circumstance that required end-of-life discussions. Pousset et al. (2009) conducted interviews with adolescent cancer survivors about their thoughts on end-of-life issues by using hypothetical scenarios. The majority of the participants, 86%, stated that they would want to be told of the severity of their condition if their disease became terminal. Also, 96% of the participants emphasized that minors in general have the right to be informed whether their condition is terminal. Findings from studies done by Hinds et al. (2001, 2005) supported the contention that adolescents with cancer want to be well informed of their illness and treatment options in order to be included in decision-making around their care.

Comparison of patient, parent, and provider preferences

An important consideration when dealing with the decisions of young patients is how these decisions fit with the preferences of their parents and health care providers. Lyon et al. (2009) looked at the effect of family/adolescent-centered advanced care planning (FACE) on the quality of communication and congruence between patients with HIV and their family members. Adolescents and their guardian or surrogate in the FACE group participated in a series of interviews to determine whether the patient wanted to be included in end-of-life decision-making and determine their experience with their illness and death and dying. Each completed a Five Wishes© document. Adolescents and their guardian or surrogate in the control group participated in a developmental interview, were given counseling on health promotion, and participated in a discussion about future plans for education or work.

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Berger, R.S. In two out of the three scenarios, patients and their guardians or surrogates showed higher congruence in the FACE group than the control group. When examining the preferences of adolescents with advanced cancer who had recently made an end-of-life decision, Hinds et al. (2005) established that the majority of patients, parents, and physicians had similar views as to the treatment choices. All three parties agreed that considering the preferences of others, preventing or reducing suffering, and ensuring that all treatment options are exhausted is critical to reaching to end-oflife treatment decisions. Similarly, Hinds et al. (2001) identified that adolescents, their parents, and health care providers want to know that all curative therapies have been tried before making end-of-life choices, and want to balance remaining life with suffering and potential adverse events. Overall, the literature supports that preferences of patients balanced with those of their parents and providers can minimize conflicts that arise when decisions are not transparent and based on considering the perspectives of patients, families and health care professionals.

Talati, Lang, and Ross (2010) studied who health care providers perceive to be the primary decision maker when working with adolescents. With 11 year olds, the majority of physicians thought that the parent was the primary decision maker, versus with 16 year olds where 58% believed that the adolescent assumed this role. Lyon et al. (2004) evaluated whether or not patients believe their providers will respect their decisions. Eighty percent of chronically ill adolescents and 68% of healthy adolescents believed that their health care providers would respect their preferences at the end-of-life. These findings underscore the importance of clarity around perceived primary decision makers. If health care providers do not think that the patient is the primary decision maker, they may be less likely to include the adolescent in end-of-life decisions. Also, if patients themselves do not trust their providers to respect and value their input, they may be less likely to be forthcoming in making their wishes known and participating in decisions that will determine the course of care.

Refusal of treatment

The ability of minor adolescents to refuse treatments that might not benefit them or cause undue suffering is another factor to consider. Competent adults age 18 and older have the right to not only consent to treatment but to also refuse such treatment, even if the Vol 5, Iss 1, 2012

refusal would result in their death. Interpretations of current laws preclude young adolescents from giving legal consent to treatment, however, research is emerging to challenge the constraints placed on treatment consent by young adolescents (Lemmens, 2009). As such, the opinions of the legal system and health care providers are presented to illustrate debates regarding patients’ ability to refuse futile treatments or those with limited benefits of leading to optimal outcomes in the end stages of diseases.

Legal System. Lemmens (2009) performed a comparative study of case law from six countries to see if mature minors are allowed to refuse life saving medical treatment. The results from this study yielded interesting findings. Although the legal systems across recognize the mature minors’ rights to consent to and refuse medical care, there is still hesitancy to allow a minor to refuse treatment when it would result in their death. Statues enforced by courts state that preservation of the minor’s life is more important than honoring their preferences for care. This is an interesting phenomenon, because if the courts consider a minor mature enough to make certain medical decisions such as treatment for sexually transmitted illnesses and treatment for alcohol and drug use, questions are then raised as to why there are not existing provisions to allow minor to make other mature medical decisions at the end of their life.

Health care providers and patients. Although the court systems would deny an adolescent’s request for refusal of life sustaining care, research shows that health care providers would accept the refusal of the patient and the parent in several circumstances. Talati et al. (2010) found that when the prognosis is good, physicians would generally deny a request for refusal of care, but when the prognosis is poor, they are more likely to respect the patient or his parent’s wishes for refusal of care, especially if the patient is 16 or older.

Pousset et al. (2009) studied adolescent cancer survivors’ views on withdrawing life sustaining treatment using hypothetical scenarios. Similar to health care providers, adolescents accept the decision to withdraw or withhold treatment in terminal situations more often than in non-terminal situations.

Analysis of the Literature

Investigations on including adolescents and young adults in end-of-life decision-making are limited, in part because this is an emerging area of research. The majority of studies still focus on how par-

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Berger, R.S. ents make decisions for their children, and fall short of considering the capabilities of adolescents and young adults in predetermining their course of treatment or withdrawal of life-sustaining therapies. Additionally, there is a significant gap in the science to guide processes for engaging younger but capable patients in decisions at the end-of-life. Studies that do exist vary in levels of scientific quality and rigor. The nine studies identified for analysis ranged from researchbased guidelines to randomized control trials (RCTs).

Comparative, exploratory and qualitative studies along with publications involving descriptive interviews add to the body of evidence to better understand how younger persons with progressive, life-threatening illnesses can contribute to decisions around their care.

Since only one of the studies was a controlled study, the body of evidence is mostly graded as level III, based on The Johns Hopkins Nursing EvidenceBased Rating Scales. In addition, the majority of evidence is graded as quality of B (Newhouse, Dearholt, Poe, Pugh, White, 2005). For the most part, study findings are fairly consistent in the results and conclusions. In many cases, recommendations for practice are only partially based on scientific evidence from literature reviews, which is expected as the science in this area is evolving and there is not a strong evidence base to formulate universally accepted guidelines. As more research is conducted in the field of end-of-life decision-making with adolescents and young adults, it is likely that evidence-based guidelines will support and direct the active involvement of adolescents and young adults in pre-determining treatment options and course of clinical care.

Limited patient population

Disease focus. One of the limitations of this inquiry is the focus on specific diseases. Six of the studies interviewed only patients with cancer or HIV, or their parents or providers. The heavy focus on these illnesses makes it difficult to generalize the data to all adolescents and young adults. Since people with other conditions may approach end-of-life decisions differently than their peers with cancer and HIV, data obtained from the above studies cannot be generalized to all young patients with life-limiting diseases.

Approachability. In addition to disease focus, only patients and their parents who were willing to talk about end-of-life issues with the researchers were approached. In some studies, such as Hinds et al.

(2005; 2001), only patients who had recently made a Vol 5, Iss 1, 2012

major end-of-life decision were approached. This may have created a bias, because adolescents and young adults who have been actively involved in a decision or who are interested in talking about end-of-life choices may have different opinions regarding their participation in the decision than patients who are unwilling to talk about it with researchers.

Small sample size. Finally, all of the studies had small sample sizes, making it difficult to generalize the data. Most of the studies had strict inclusion criteria, utilizing small patient populations. In addition, since most of the studies involve in depth interviews about end-of-life decisions, which can be difficult conversations, many people who are approached are not comfortable participating, which further limits the sample size. Most of the sample sizes were under 100 patients, with some of them Wiener et al. (2008) and Hinds et al. (2005) including only 20 patients each.

Inconsistent ages

Another reason the research is limited is because of the lack of clarity of definitions regarding the ages of patients used. While most studies define the terms adolescents, young adults, and mature minors, the definitions differ in all of them. There is no standard definition for any of the age groups. For example, Pousset et al. (2009) describes adolescence as 11 to 18, while Lyon et al. (2004) describes adolescence as 12 to 21 years. Adolescence is a time of great growth and maturation, and by grouping all of adolescence into the same studies, it is difficult to generalize recommendations to specific ages of adolescents who will approach end-of-life decisions differently based on their developmental level.

In addition to the differing definitions of the age groups, most of the studies did not include young adults. Wiener et al. (2008) is the only study that interviewed young adults up to 28 years old. McAliley et al. (2000) interviewed teenagers but asked for their opinions on advance directives in young adults 18 to 29 years old. The rest of the studies looked at adolescents and mature minors. Since there is not more data on young adults in the studies, and a 26 year old clearly will approach end-of-life decisions differently than a 12 year old, the inquiry cannot be generalized to all young adults making end-of-life decisions.

Strengths

This body of literature is strongest in its focus

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Berger, R.S. on the patients themselves, as opposed to the preferences of the parents and health care providers. Several of the studies included parents and health care providers, in addition to the patients, to determine if there is congruence between their thought processes in regards to end-of-life decisions (Hinds et al., 2005; Hinds et al., 2001; Lyon et al., 2009). This adds strength to the literature, since adolescents under the age of 18 cannot legally make these decisions without their parents, and even once adolescents and young adults have reached age 18 parents are usually still included in the decision process.

Recommendations Implications for Practice

The above results have important implications for practice when dealing with adolescents and young adults. Although formal discussions with patients regarding end-of-life decisions may be designated to a specific member of the health care team, nurses are often responsible for having conversations with their patients about these issues (McAliley et al., 2000).

Nurses may be the first people to initiate conversations with young patients about end-of-life issues. If health care providers are aware that patients wish to have discussions about their end-of-life preferences, they may be more likely to talk about this difficult topic with them.

Health care providers may be concerned that having end-of-life conversations with their patients will cause conflict, if patients and parents do not agree.

The literature as a whole shows that young people and their parents have similar desires at the end-of-life and have a high level of congruence when making end-oflife decisions. Health care providers should use this knowledge to include adolescent and young adult patients in end-of-life planning, and take a more family centered approach to allow everyone to express their desires.

Implications for Research

There are several gaps in research pertaining to how adolescents and young adults participate in end-of-life decision-making. The overall strength of such research could be substantially improved by increasing the sample sizes of individual studies. Also, although qualitative research is very useful for this field, including more RCTs would strengthen the quality of the research. In addition, more studies including young adults and studies separating out adolescents Vol 5, Iss 1, 2012

into groups of younger and older participants would strengthen the existing research, as adolescence and young adulthood is a wide range that incorporates people of many different developmental stages.

Since the most common causes of death in adolescents and young adults are accidents, homicide, and suicide (Freyer, 2004), more studies similar to Lyon et al.

(2004) that look at healthy young people’s views of end-of-life issues are important, since healthy young people may eventually be in a situation where they cannot participate in medical decision-making. Wiener et al. (2008) looked at whether adolescents and young adults find the Five Wishes© document to be helpful and appropriate, but further studies looking at whether this age of people fully understands the medical terminology presented in these adult documents is crucial. Finally, research is needed to look at whether including adolescents and young adults in end-of-life decision-making allow their wishes to be respected.

Conclusion

Although there are limited empirical data to support end-of-life decision-making including adolescents and young adults, studies that do exist have important implications for clinical practice which will be expanded as further research is conducted. The literature shows that adolescents and young adults can and want to be included in decision-making at the end-of-life, whether this is through the use of advance directives, refusal of treatments, or in depth conversations about their preferences. Even with young patients, health care providers should have a strong patient-centered approach to care, where the patient is an active member in their own health care. Health care providers can nurture the dying adolescent and young adult’s growing autonomy by including them in their own end-of-life decision-making.

References Freyer, D.R. (2004). Care of the dying adolescent: special considerations. Pediatrics, 113(2),

381-388. doi:10.1542/peds.113.2.381 Hinds, P. S., Drew, D., Oakes, L. L., Fouladi, M., Spunt, S. L., Church, C., & Furman, W. L.

(2005). End-of-life care preferences of pediatric patients with cancer. Journal of Clinical Oncology, 23(36), 9146-9154. doi:10.1200/ JCO.2005.10.538 Hinds, P.S., Oakes, L., Furman, W., Quargnenti, A., Olson, M.S., Foppiano, P., & Srivastava,

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Berger, R.S.

D.K. (2001). End-of-life decision-making by adolescents, parents, and health care providers in pediatric oncology: research to evidence-based practice guidelines. Cancer Nursing, 24(2), 12234. Retrieved from http://journals.lww.com/cancernursingonline/pages/default.aspx Lemmens, C. (2009). End-of-life decisions and minors: do minors have the right to refuse life

preserving medical treatment? A comparative study. Medical Law Review, 28(3), 478-97. Retrieved from http://medlaw.oxfordjournals.org/ Lyon, M.E., Garvie, P.A., McCarter, R., Briggs, L., He, J., & D’Angelo, L.J. (2009). Who will

speak for me? Improving end-of-life decisionmaking for adolescents with HIV and their families. Pediatrics, 123(2), 199-206. doi:10.1542/ peds.2008-2379 Lyon, M.E., McCabe, M.A., Patel, K.M., & D’Angelo L.J. (2004). What do adolescents want?

An exploratory study regarding end-of-life decision-making. Journal of Adolescent Health, 35(6), 529 e. 1-6. doi:10.1016/j.jadohealth.2004.02.009 McAliley, L.G., Hudson-Barr, D.C., Gunning, R.S., & Rowbottom, L.A. (2000). The use of

advance directives with adolescents. Pediatric Nursing, 26(5), 471-80. Retrieved from http:// www.pediatricnursing.net/ Newhouse R, Dearholt S, Poe S, Pugh LC, White K. (2005). The Johns Hopkins Nursing

Evidence- based Practice Rating Scale. Baltimore, MD, The Johns Hopkins Hospital; Johns Hopkins University School of Nursing.

Pousset, G., Bilsen, J., De Wilde, J., Benoit, Y., Verlooy, J., Bomans, A.,… & Mortier, F.

(2009). Attitudes of adolescent cancer survivors toward end-of-life decisions for minors.

Pediatrics, 124(6), 1142-8. doi:10.1542/ peds.2009-0621 Talati, E. D., Lang, C. W., & Ross, L. F. (2010). Reactions of pediatricians to refusals of medical

treatment for minors. Journal of Adolescent Health, 47(2), 126-132. doi:10.1016/j.jadohealth.2010.03.004 Wiener, L., Ballard, E., Brennan, T., Battles, H., Martinez, P., & Pao, M. (2008). How I wish to

be remembered: the use of an advance care planning document in adolescent and young adult populations. Journal of Palliative Medicine, 11(10), 1309-13. doi:10.1089/jpm.2008.0126 Vol 5, Iss 1, 2012

Zinner, S. E. (2009). The use of pediatric advance directives: A tool for palliative care

physicians. American Journal of Hospice and Palliative Medicine, 25(6), 427-430. doi:10.1177/1049909108322294

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Parker, T.Y.

Management of Chronic Non-malignant Pain in Nursing Homes Residents Therese Y. Parker Abstract

Pain in nursing homes remains underassessed, underreported and undertreated, consequently, becoming a growing concern in the United States. The purpose of this inquiry is to review the current evidence guiding the management of chronic non-malignant pain among nursing home residents. Twelve articles relevant to this topic were obtained from a search of the electronic databases PubMed and Cumulative Index of Nursing and Allied Health (CINAHL). Findings underscore an urgent need to improve assessment, documentation, and management of pain in nursing home residents.

Nursing home residents experience underrecognized and undertreated pain that adds to the decline in their quality of life. Among nursing home residents, pain has a prevalence of 49% to 83%, while its occurrence is less than 10% to 40% in the general community and 60% in hospitalized patients (Herman, Johnson, Ritchie, & Parmelee, 2009). Only about half of nursing home residents experiencing pain receive analgesic medications on an as-needed basis and 25% of residents reporting daily pain receive no analgesic medications. Untreated pain can lead to depression, impaired ambulation, sleep disturbance, less social interaction, and greater utilization of healthcare. Pain can also aggravate some conditions, delay recovery, impair physical functioning, and lead to polypharmacy (Herman et al., 2009).

With such a high percentage of nursing home residents receiving inadequate pain control, it is important to understand the current practices as these relate to pain management for nursing home residents and find the best methods to control non-malignant pain. The purpose of this paper is to review the literature related to treatment of chronic, non-malignant pain in nursing home residents. Research studies were obtained using online databases. Specifically, this paper analyzes pain prevalence, detection of pain, improving pain assessment practices, and approaches to effective pain management in managing pain in nursing home residents.

Methods

A literature search was conducted to identify recent research reports addressing any aspect of pain assessment or management in the nursing home setting using two databases: Cumulative Index of Vol 5, Iss 1, 2012

Nursing and Allied Health (CINAHL) and PubMed. Publications were limited to the last five years and the snowball technique was emplyed to identify additional relevant articles through reviewing the reference list of included articles. A total of twelve relevant articles were found, which are used as evidence for this paper.

Presentation of Empirical Evidence Pain Prevalence

Pain is a common problem in older individuals living in nursing homes, with the incidence of persistent pain between 49% and 84% and one-quarter of residents experiencing daily episodes of pain (Won, Lapane, Vallow, Schein, Morris, & Lipsitz, 2004).

From a cross-sectional study that analyzed pain prevalence among 21,380 nursing home residents in 10 states, occurrence of persistent pain was highest for nursing home residents with musculoskeletal pain and those with a history of falls, fractures, or surgery (Won et al., 2004). Chronic pain is characterized by at least one of the following criteria: usually lasts three months or longer, lasts at least one month beyond the usual course of an acute disease or the reasonable time for an injury to heal, is associated with a chronic pathological process that causes continuous pain, recurs intermittently for months or years, and is often correlated with a long-standing functional and psychological impairment.

Hanlon and colleagues (2010) investigated pain in nursing home hospice and palliative care residents. This study used a cross-sectional design to evaluate 303 patients from 1174 nursing homes.

Facility staff was asked if, in the past 7 days, the residents reported or showed evidence of pain. Medication use data were derived from medication admin-

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Parker, T.Y. istration records and demographic information and health status were retrieved from the Minimum Data Set records. Pain symptoms were present in over onethird of elderly nursing home hospice or palliative care residents despite use of opioids for pain relief among two-thirds of patients experiencing pain. Acetaminophen was administered in 31% of residents. Hanlon et al. (2010) conducted one of the first national studies of pain prevalence in older nursing homes hospice and palliative care residents. They found that when comparing patients in pain to those without pain, patients enduring pain had longer lengths of stay in hospice/ palliative care and were more likely to be incontinent of bowel and bladder. Race was not a significant factor as to whether residents received adequate pain control in this study. Because of the cross-sectional study design, it was not possible to establish causal-effect relationships in determining effective pain management.

Researchers also did not have sufficient data to report information about pain severity and analgesic dosages, and with the small sample size, meaningful multivariable analyses could not be performed.

Detection of Pain

Buhr and White (2006) trace the lack of appropriate treatment of pain to the inability of nursing facility staff members to recognize and distinguish chronic pain from acute pain. Differentiating acute pain from chronic pain in patients with cognitive impairments is an additional challenge. In a study to field test a standardized resident interview and medical record review protocol to assess and score quality indicators relevant to pain, Cadogan et al. (2005) noted that physicians infrequently assessed for pain.

This descriptive study of 794 nursing home residents and medical records from 542 patients showed that during the patient interview, 48% reported symptoms of chronic pain and 81% of the group reported a need for pain medication. However, nearly half of these patients had no physician assessment of pain in the last year. Overall, physician pain assessments were infrequent or incomplete (Cadogan et al., 2005). This study included evidence-based quality indicators with explicit selection and scoring criteria for each indicator to permit reliable data recording. Interviews identified chronic pain in a stable fashion which allows for judgments to be made about the quality of physician and nursing home staff documented pain assessment.

It was noted that the cross-sectional methodology used did not allow determination of the direction of the reVol 5, Iss 1, 2012

lationship between documented physician pain assessment and Minimum Data Set documentation of pain, which is a limitation of the study.

Edelen and Saliba (2010) investigated effective tools to assess for pain in nursing home residents.

Two of the most common and supported methods are the 0-10 numeric rating scale (NRS) and the verbal descriptor scales (VDS), which asks the patient to choose a verbal description of pain such as mild, moderate or severe on a 4-5 point scale. These researchers (2010) chose to use the item response theory (IRT) as a cross-calibration of the two scales to test NRS and VDS (Edelen & Saliba, 2010). They sampled over three thousand nursing home residents from 71 nursing homes across 8 states and demonstrated that either of the two scales can be used in practice depending on physician preference. Eden and Saliba (2010) did not discuss the cognitive status of their patients.

Another method of determining pain in older adults in nursing homes was examined by Jones, Vojir, Hutt and Fink (2007). Authors compared three different pain assessment instruments (VDS, Faces Pain Scale and NRS) to examine the equivalency of pain intensity scores for 135 nursing home residents. They found that the pain levels across the three tools were highly correlated although residents were found to underrate pain intensity on the Faces Pain Scale. They noted that nursing home residents generally preferred the VDS but residents with language difficulties appeared to prefer the Faces Pain Scale. A study limitation was the inclusion of nursing homes from only one state, however, generalizability was enhanced by the fact that rural and urban nursing homes were included in the study along with a meaningful number of Hispanic subjects represented in the sample.

Improving Pain Assessment

Buhr and White (2006) researched methods to improve pain assessment in nursing homes. Their intervention was the formation of a quality improvement team that reviewed current clinical practice guidelines, updated policies and procedures, developed tools for pain assessment, and educated the staff in pain assessment and management. This intervention involved a â&#x20AC;&#x153;Plan-Do-Study-Actâ&#x20AC;? (PDSA) methodology that was carried out in one nursing home in North Carolina with three related facilities as secondary sites. The staffâ&#x20AC;&#x2122;s pain-related knowledge was measured with multiple choice tests as well as the completeness of pain assessments before and after the education. Re-

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Parker, T.Y. sults showed that education and the use of the PDSA paradigm improved staff knowledge as well as patient and family satisfaction with chronic pain evaluation.

This was evident by increased scores on the multiple choice test for all l members of the nursing team and measurable improvements in documentation. A limitation was the fact that the program was carried out over a short time span, and therefore assessment of continuous quality improvement was not possible. There was also a lack of involvement of nurses and other direct care workers in the planning process. A strength of Buhrâ&#x20AC;&#x2122;s and Whiteâ&#x20AC;&#x2122;s (2006) work was related to their focus on quality of care as perceived by the patients and families rather than merely improving documentation practices. Educational strategies engaged professional nurses, licensed practical nurses, certified nursing assistant, physicians and nurse practitioners as well as patients and families. Their approach underscored the need to involve all health care providers in pain assessment practice.

Detection of Pain in Patients with Cognitive Impairment

Not all nursing home residents are able to answer questions about pain. Special consideration needs to be taken when detecting pain in nursing home residents with cognitive impairments. In a study conducted by Leone et al. (2009), researchers analyzed verbal as well as nonverbal pain scales for nursing home residents. They selected their sample of 40 participants from two of the major skilled care and dementia units at a Columbia, NY area nursing home.

Verbal tools that were reviewed included the visual analog scale, faces pain scale, Wong-Baker pain scale and others. These scales have been used extensively in different age groups with good results but require verbal communication with a patient and sometimes require abstract thinking, making them suitable for patients with intact cognition. Nonverbal tools were chosen based on their ability to detect pain in patients with cognitive deficits and sometimes no ability to communicate their pain status. These researchers used a cycle of the PDSA model. The tools chosen for the study were the visual analog scale for verbal patients and for the cognitively impaired, the Non-communicative Patientâ&#x20AC;&#x2122;s Pain Assessment Instrument (NOPPAIN), Assessment in Advanced Dementia (PAINAD), and the Non Verbal Indicators for Pain scales fulfilled the requirements of the researchers. These tools were chosen as the most sensitive, specific, appropriate, Vol 5, Iss 1, 2012

time sensitive and widely accepted. Leone and colleagues (2009) concluded that tools such as the above mentioned are necessary for both verbal and nonverbal evaluation of pain in nursing homes. In addition, they found that regular cognitive and behavioral assessment may help assess pain by providing additional information to physicians, nurses, and other caregivers when treatment becomes more complex and challenging.

One limitation of this study was its small sample size.

However, the participants were randomly chosen and both verbal and nonverbal pain scales were studied.

Pain Management

Won, Lapane, Vallow, Schein, Morris and Lipsitz (2004) found that pain is highly prevalent in nursing homes and that there is suboptimal compliance with geriatric prescribing recommendations. A total of 21,380 nursing home residents were included in this cross-sectional study. The Minimum Data Set assessments on pain, analgesics, cognitive, functional, and emotional status were summarized. The study findings showed that acute pain was thought to be an important contributory source of chronic pain, and that physicians may not always properly prescribe analgesics and many residents do not always receive analgesic medications. Although The American Geriatrics Society guidelines state that most analgesics should be given as standing doses for chronic pain, only 46% of these drugs were given as standing doses and analgesics were typically only prescribed on an as needed basis. Weaknesses of this study included the lack of instruments for evaluating pain in patients with cognitive or communication impairments. The fact that the MDS coordinator completed the MDS raised concerns as this individual may not have been directly involved in clinical care. This may have lead to the underestimation of prevalence of pain.

Baier and colleagues (2004) conducted a collaborative quality improvement project to ameliorate pain in nursing homes. This quasi-experimental design used pretests and posttests to study 21 nursing home facilities. The project consisted of a multifaceted collaborative intervention involving audit feedback of pain management, education, training, coaching, and using rapid-cycle-quality-improvement techniques as well as inter-nursing home collaboration. Each nursing home had a quality improvement team composed of directors of nursing, unit nurses, and certified nursing assistants. The five components of the interventions were: education on pain management,

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Parker, T.Y. audit and feedback, a systematic quality-improvement approach focusing of PDSA cycles, one-on-one mentoring for each nursing home, and collaboration between participating facilities. The results of the study showed that this intervention improved painmanagement process and outcome measured in nursing homes. This is one of the first projects conducted in the nursing home setting demonstrating that a multifaceted intervention using a collaborative qualityimprovement model significantly reduced the prevalence of pain and improved adherence to processes of care recommended in clinical care guidelines. One weakness was that sustainability of the results was not addressed.

A study by Horner and co-investigators (2005) examined whether a quality improvement intervention can improve pain management in nursing homes. In this study, experts in quality improvement and clinical pain management provided nursing home staff leaders with feedback on pain quality indicator data, pain management education, and technical assistance to apply the PDSA model. After the intervention, residents in pain who underwent pain assessments increased from 8% to 29% and residents receiving non-pharmacological pain treatments increased from 31% to 42%. Pain medication prescription, however, did not change. For residents with daily moderate or excruciating pain, complete pain assessment was associated with an increase in likelihood of pain medication prescription. This study suggests that quality improvement methods can be used to improve pain management for nursing home residents as previous research has shown success in pain management in acute care hospitals with quality improvement efforts. The intervention did not change pain medication prescribing practices, although it may have reinforced the relationship between assessment and prescription of scheduled medications for residents in more severe daily pain. This finding emphasizes the need for thorough assessment of pain to ensure adequate treatment strategies, particularly among residents with the worst pain. The pre-post study design included a baseline chart data collection on three established quality indicators. However, researchers did not measure resident response to treatment, and, therefore, cannot define the clinical effect of current prescribing practices.

Jones et al. (2004) tested a multifaceted, culturally competent intervention to improve nursing home pain practices, improve staff, resident, and physician knowledge and attitudes about pain and its Vol 5, Iss 1, 2012

management, improve actual pain practice in nursing homes, and improve nursing home policies and procedure related to pain. In this study, six Colorado nursing homes were studied as the control group while six others were chosen as the intervention group. The intervention successfully improved the percentage of residents reporting constant pain but there was no reduction in percentage of residents reporting pain or moderate/severe pain. Researchers found that interventions to improve pain management in nursing homes must target residents, nursing home staff, and primary care physicians. Jones et al. (2004) included an equal number of rural and urban nursing homes and employed both educational and behavioral change strategies. However, authors reported several challenges that occurred during implementation that had to be modified to enhance translation strategies being used.

When comparing pain management for hospice nursing home patients and non hospice patients, Miller and colleagues (2002) found that analgesic management of daily pain is better for residents enrolled in hospice than nursing home residents not enrolled in hospice. The study found that many dying nursing home residents in daily pain receive no analgesic administration or are receiving analgesic treatment inconsistent with the American Medical Directors Association and other pain management guidelines.

Although analgesic prescribing patterns for hospice residents were more consistent with recommended prescribing guidelines, there was a high prevalence of undesirable prescribing practices found for all dying residents. A high proportion of all dying residents received analgesics only on an as needed basis and opioid prescriptions were used more frequently by hospice residents that non hospice residents. The investigators concluded that it is necessary to improve analgesic management of pain in nursing home residents if high quality end-of-life care is to be achieved.

This study was a retrospective and comparative cohort study. The findings were similar to those of comparable studies of pain management in nursing homes that used different data sources than the Minimum Data Set and studies have shown that most MDS data are reliable and valid. One reported limitation of the study was that multivariate analyses could not control for all patient or facility selection bias and the study could not control for all patient characteristics that predispose them to elect hospice care.

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Parker, T.Y. Assessment of the State of the Science of the Empirical Evidence

Publications assessed in this paper included cross sectional studies, quasi-experimental, pretest and posttest, quality improvement models, descriptive studies, multifaceted and culturally competent interventions, qualitative and quantitative methods and retrospective and comparative cohort studies. Of the twelve articles, only two mentioned populations that were not Caucasian. Jones et al. (2007) included Hispanics in their study, while Jones et al. (2004) was the only study that mentioned cultural competency. The majority of the studies did not include residents with cognitive impairments, only Buhr et al. (2006) and Cadogan et al. (2005) mentioned residents with cognitive disorders and Buhr et al. (2006) merely mentioned that the residents with cognitive disorders could not fill out the NHP. Cadogan et al. (2004) was the only study that mentioned nonverbal tools to assess pain.

Overall, the empirical literature reviewed suggests that pain is not adequately treated in nursing home settings. Whether it is a problem with detecting or assessing pain or physicians misunderstanding residents’ pain, both hospice and non hospice patients do not report adequate pain management in nursing homes. There are a variety of tools available to adequately assess pain and there are many quality improvement methods that can and should be implemented to improve pain management in nursing home residents.

Recommendations

Based on findings, recommendations for practice include frequently assessing all nursing home patients for pain. This included using both the VDS and NRS since different patients report greater satisfaction with different tools (Edelen & Salibe, 2010). Using a variety of the tools from the Leone et al. (2009) study is a recommendation for residents who are nonverbal or who have cognitive impairments. The visual analog scale should be used for verbal patients and for the cognitively impaired, the Non-communicative Patient’s Pain Assessment Instrument (NOPPAIN), Assessment in Advanced Dementia (PAINAD), and the Non Verbal Indicators For Pain scales should be used.

After the intensity and frequency of pain is found and a baseline is noted, nursing home staff should ensure that standing orders of pain medication are available when appropriate. There are guidelines and evidence for how to manage pain in nursing home residents, it Vol 5, Iss 1, 2012

is now necessary to implement these guidelines and translate evidence into practice. Using the quality improvement tools and teaching nursing home staff are ways to improve pain control that are proven effective (Buhr et al., 2006).

Policies should be developed and implemented in nursing homes settings to guide clinicians in selecting the most appropriate pain evaluation measures, specifically the frequency for how often pain is assessed, and when it is necessary, administering standing orders for pain medications. Buhr and White (2006) noted that a quality improvement team which utilizes a “Plan-Do-Study-Act” paradigm improves pain assessment in nursing homes. Updating policies and procedures and employing tools for rating pain based on reviews of current literature will improve the likelihood that pain will be assessed and addressed in nursing homes settings.

Since acute pain may be an important contributing source of pain, more effective provider education and research is needed to determine whether the treatment of acute pain could prevent persistent pain (Won et al., 2004). Substantial knowledge gaps and suboptimal attitudes and beliefs about pain and its treatment demonstrated by nursing home staff and pharmacological knowledge must be addressed to promote better pain assessment practices. Educational content on pain should be expanded in medical and nursing school curriculum, and licensing and certifying exams should have an emphasis on gero-pharmacology (Jones et al., 2004).

Future studies should be conducted to look at minority population who might differ in the terms of the quality of their pain management in nursing homes. More research on how effective pain control can improve quality of life, sleep patterns, ADL, and recovery will provide a stronger foundation for evidence-based practice in nursing homes. Greater attention should be given to testing pain assessment scales and intervention in older adults receiving palliative care or hospice in nursing homes.

References Baier, R.R., Gifford, D.R., Patry, G., Banks, S.M., Rochon, T., DeSilva, D., & Teno, J.M. (2004).

Ameliorating pain in nursing homes: A collaborative quality-improvement project. Journal of the American Geriatrics Society, 52(12), 1988-1995.

Buhr, G.T., & White, H.K. (2006). Quality improvement initiative for chronic pain assessment and

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Parker, T.Y. management in the nursing home: A pilot study.

Journal of the American Medical Directors Association, 7(4), 246-253.

Cadogan, M.P., Schnelle, J.F., Al-Sammarrai, N.R., Yamamoto-Mitani, N., Cabrera, G., Osterweil, D., & Simmons, S.F. (2005). A standardized quality assessment system to evaluate pain detection and management in the nursing home.

Journal of the American Medical Directors Association, 6(1), 1-9.

Edelen, M.O., & Saliba, D. (2010). Correspondence of verbal descriptor and numeric pain intensity: An item response theory calibration. The Journals of Gerontology. Series A, Biological Sciences and Medical Sciences, 65(7), 778-785.

Hanlon, J.T., Perera, S., Sevick, M.A., Rodriguez, K.L., & Jaffe, E.J. (2010). Pain and its treatment in older nursing home hospice/palliative care residents. Journal of the American Medical Directors Association, 11(8), 579-583.

Herman, A.D., Johnson, T.M., Ritchie, C.S., & Parmelee, P.A (2009). Pain management interventions in the nursing home: A structured review of the literature. Journal of the American Geriatrics Society, 57(7), 1258-1267.

Horner, J.K., Hanson, L.C., Wood, D., Silver, A.G., & Reynolds, K.S. (2005). Using quality improvement to address pain management practices in nursing homes. Journal of Pain and Symptom Management, 30(3), 271-277.

Jones, K.R., Fink, R., Vojir, C., Pepper, G., Hutt, E., Clark, L., Scott, J., Martinez, R., Vincent, D., & Mellis, B.K. (2004). Translation research in long-term care: improving pain management in nursing homes. Worldviews on Evidence-Based Nursing, 1, 13-20.

Jones, K.R., Vojir, C.P., Hutt, E., & Fink, R. (2007).

Determining mild, moderate, and severe pain equivalency across pain-intensity tools in nursing home residents. Journal of Rehabilitation Research & Development, 44(2), 305-314.

Leone, A.F., Standoli, F., & Hirth, V. (2009). Implementing a pain management program in a longterm care facility using a quality improvement approach. Journal of the American Medical Directors Association, 10(1), 67-73.

Miller, S.C., Mor, V., Wu, N., Gozalo, P., & Lapane, K. (2002). Does receipt of hospice care in nursing homes improve the management of pain at the end of life? Journal of the American GeriatVol 5, Iss 1, 2012

rics Society, 50(3), 507-515.

Won, A.B., Lapane, K.L., Vallow, S., Schein, J., Morris, J.N., & Lipsitz, L.A. (2004). Persistent nonmalignant pain and analgesic prescribing patterns in elderly nursing home residents. Journal of the American Geriatrics Society, 52(6), 867-874.

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Editorial Board 2012

Allison Kodan President of OSNR akodan@nurisng.upenn.edu

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Copy Editors: Lauren Dinella Bianca Cutler Sarah Voisine

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JONSR is a publication of the Organization of Student Nursing Research. Copyright Š 2012 OSNR. The contents of this journal should not be reproduced or reprinted without the permission of the Journal of Nursing Student Research or its authors. All rights reserved.

Special Thanks To: Kathleen McCauley, PhD, FAAN, RN, CS Associate Dean for Academic Programs University of Pennsylvania School of Nursing Members of the JONSR Faculty Editorial Board Support of the Penn Nursing Community

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