Take Test
“It happened so fast,” 84-year-old Anne Nolcher told the admitting nurse the day she entered a nursing home. “I can't believe that in November I was outdoors doing yard work! Now it's January, and I can't take care of myself at home.” Although she was ill with lung cancer, and she strongly suspected she was dying, she didn't want invasive treatment. She said simply, “My prayer is that this journey won't take too long.”
Ms. Nolcher had made her decisions about treatment after considerable discussion with her three adult children (her husband had died years before). Although all of her children lived out of state, she'd remained close to each of them, especially her eldest daughter. During the preceding year Ms. Nolcher had been diagnosed with wet macular degeneration in the left eye, for which she received photodynamic therapy, and the vision in her right eye also was deteriorating. Yet she remained physically active and was proud of her ability to live independently, at home. Then in December she began having difficulty swallowing and eating and felt weary and weak. She was hospitalized to drain a pleural effusion.
When laboratory test results showed “atypical cells with the suspicion of malignancy,” her physician requested computed tomography scans, but Ms. Nolcher was reluctant to pursue a definitive diagnosis, believing that treatment could offer only temporary benefits and would likely “do more harm than good.” She told her children, “I feel all right about dying of cancer. It's living blind that frightens me.” Her children supported her decision to decline further diagnostic procedures and life-prolonging treatments, but it had become clear that Ms. Nolcher couldn't continue to live alone.
It was important to begin planning and decision making immediately. First, Ms. Nolcher and her children had to decide where she would receive care; it was after choosing a nursing home that they had discussed whether to pursue life-sustaining measures. On admission Ms. Nolcher was asked whether she had written an advance directive (a durable power of attorney for health care or a living will) and whether she would want interventions such as antibiotic administration, hospitalization, or artificial nutrition and hydration. Pain and symptom management also were addressed. Indeed, pain management became of particular concern during Ms. Nolcher's last weeks of life.
Although Ms. Nolcher was at peace with her decision, she and her children held a few misconceptions about death, dying, and comfort care, as is common. The following is a discussion of some fallacies about dying in old age, in light of current knowledge.
 | Figure. |
HOW DYING OLD DIFFERS FROM DYING YOUNG
Perhaps because nearly 80% of people who die in the United States each year are age 65 or older, 1 it's thought that dying old is preferable to dying young. Ms. Nolcher herself expressed this view, telling her children, “Don't be sad for me. I'm 84 years old, and I've had a good life. It would be different if I were only 50 or 60.” She thought of death as the natural result of disease and illness in old age, and she seemed ready to accept it. It appeared that her longevity somehow surprised her.
A person born in 1919, the year of Ms. Nolcher's birth, was expected to live only about 48 years. 2 Infectious and communicable diseases were the most common causes of mortality at that time, but subsequent advances in the treatment and management of chronic diseases have extended life expectancy dramatically. A person born in 2000 is expected to live about 77 years, 2 and many illnesses that once were quickly and inexorably fatal now follow a different course, with alternating periods of exacerbation and remission.
But exacerbation takes a toll, and usually during each recovery period a lower level of health and functioning is regained by the patient until the overall loss of physiologic reserve eventually causes death. 3,4 And the uneven progression of a chronic illness makes it harder to predict the time of death. People now can live longer with significant impairment and, in many cases, with greater dependency on others. Older adults often have several comorbid conditions, any of which might cause sudden death or be managed for years.
MYTH: MOST DEATHS OCCUR IN HOSPITALS
Although opinion polls have indicated that most older adults want to die at home, only 25% of all deaths take place there, with nearly 50% occurring in hospitals and another 20% to 25% in nursing homes. 1 But this picture is changing, in part because hospital stays are decreasing dramatically under managed care. By 2020, about half of all deaths are expected to occur in nursing homes. 1
Why don't more people die at home? One reason is that public policy is prohibitive. For example, Medicare's hospice benefit covers the cost of home hospice care for eligible elderly patients, including home visits by hospice clinicians, durable medical equipment and medications, and bereavement services to the family. But many patients need more hours of professional care than hospice programs offer under the benefit. (See www.medicare.gov/Publications/Pubs/pdf/02154.pdf .) Many families can't afford a caregiver, and having a family member provide care isn't always possible. For these reasons many older Americans enter institutions to receive end-of-life care; many die in one. The trend toward moving people out of hospitals will continue.
It also should be noted that some people prefer not to die at home. Death in a hospital doesn't necessarily represent a palliative care failure. And it's important to bear in mind that patients and their families need support, regardless of the place of death, for several reasons: people now live longer with chronic or incurable illness, and illness is often more acute at the point of death; symptoms can be numerous and difficult to control; and family caregivers often are elderly and infirm themselves.
Improving nursing home care. Efforts to improve end-of-life care in nursing homes have lagged behind such efforts in hospitals. 5 An Institute of Medicine (IOM) study concluded that so little is known about the experience of dying in a nursing home that the researchers could only pose questions for study, such as: How well are older people and their families informed about diagnosis, prognosis, and treatment options? How are preferences in end-of-life care elicited and recorded? Which practice guidelines and symptom assessment tools and protocols are used to guide care? How is the quality of care being evaluated and improved? 4
Most older people in nursing homes have advanced illness, and when cure is unlikely, a curative approach to treatment can give only minimal benefit, at best. Yet many symptoms, such as pain, anxiety, and dyspnea, cause much suffering. Although chronic heart failure, cancer, and chronic obstructive pulmonary disease, for example, cannot be cured in most cases, alleviating or controlling symptoms can ease suffering.
The protocols and assessment tools usually used to guide and evaluate the care provided in nursing homes often do not reflect the needs of the dying. The Minimum Data Set (MDS) and its associated Resident Assessment Protocols (RAPs), for example, have been used effectively to guide care provided to many nursing home residents, but the MDS does not have an RAP template to guide the assessment, monitoring, and control of common end-of-life symptoms. The usual indicators used to assess the quality of care in nursing homes (such as functional status, activity level, eating, and nutrition) aren't applicable to dying residents. 6
A lack of sufficient training in end-of-life care among staff members also affects the quality of nursing home care. Certified nursing assistants provide much of the direct care, and the Kayser-Jones study found that they often feel both frustrated with inadequate staffing and inadequately prepared to address the grief and bereavement that follows a resident's death. 7 And Forbes found that the licensed nurses who supervise such workers often lack necessary training and communication skills. 6
Travis and colleagues recently identified four obstacles to end-of-life care in nursing homes: a failure to recognize the futility of curative treatment, difficulties in communication among those making decisions about care, a lack of agreement among all parties concerned on the course of care, and delayed implementation of a palliative plan of care. 8 The researchers found that these obstacles were hierarchical; that is, the failure to acknowledge the futility of curative treatment “almost inevitab[ly]” led to the other three obstacles. Because the latter two obstacles were the most prevalent, ongoing communication and involvement of all concerned in decision making are imperative. The researchers also noted that although clinicians understand and routinely practice aggressive curative care, the same is not true of the practice of palliative care. Deficits in providers’ knowledge of end-of-life care worsen the problem.
Similarly, McCue observed that the common, Western conception of death as the result of a failure to reverse declining health serves only to intensify fears about it, 9 which can in turn prevent caregivers from addressing the patient's needs. After studying one nursing home, Forbes noted that although “residents expressed a readiness to die,” staff members were hesitant to discuss death. 6 She concluded that staff education should be focused on death and dying, end-of-life care, communication, and conflict resolution.
Most providers want families to be certain that a loved one didn't die suffering and isolated. But many family members do witness a loved one dying in unrelieved pain, dyspnea, or anxiety, and they don't forget providers’ inability to attend to these needs. 10 This falls far short of the IOM's description of a “good death” as one that is “free from avoidable distress and suffering for patients, families, and caregivers.”4 The IOM has proposed an ideal goal in end-of-life care: “People with advanced, potentially fatal illnesses and those close to them should be able to expect and receive reliable, skillful, and supportive care.”4 How can this ideal be realized?
One solution. Caring Connections, an innovative program of Laurel Lake Retirement Community in Hudson, Ohio, takes a family-centered, holistic approach to end-of-life care. 11 The community serves more than 450 older adults who live in a nursing home, an assisted living facility, or private homes on the Laurel Lake grounds.
The original program offered a 30-hour course based on hospice principles and volunteer training methods to all professional and volunteer caregivers. Topics included assessing the physical, emotional, and spiritual status of dying residents; exploring caregivers’ attitudes concerning death and dying; and meeting the full range of residents’ needs. The program's emphasis on frank discussion of death, dying, and bereavement was uncommon, especially in nonhospice settings. Ruegg and colleagues have reported that the program has yielded favorable results, including better team management of symptoms such as pain, dyspnea, and anxiety, and the greater use of hospice care. 11 Follow-up education is offered annually to the staff.
Although most hospice programs provide bereavement support for a year or longer, many nursing homes still do not. At the University of Iowa College of Nursing, an evidence-based protocol that includes guidelines on how to offer such support for the use of nursing home staff was recently developed. 12 Entitled Family Bereavement, the protocol (available for $14 at www.nursing.uiowa.edu/centers/gnirc/protocols.htm ) includes a bereavement risk inventory for the assessment of family members.
To date, few studies have given insight into how to provide the best end-of-life care in long-term care settings. Preliminary evidence in one study has shown that the early education of the proper staff members was crucial to an intervention's success. 13 Successful change requires time and resources, and the researchers acknowledge that teaching new skills is a formidable undertaking. Because financial constraints, staffing patterns, and legal regulations often impede the ability to deliver high-quality end-of-life care, it's important to study such barriers.
MYTH: THE ELDERLY ARE LESS DAMAGED BY CUMULATIVE LOSS
Several studies have shown that cumulative losses compound the effects of grief and bereavement associated with death. Rosenzweig and colleagues found that by age 65, about 50% of women and 10% of men have suffered the loss of a spouse at least once. 14 In a study of 75 bereaved spouses ages 65 to 94, Herth found that 90% reported at least one other significant concurrent loss (a loss “experienced during the period of grief”), and 67% reported more than three such losses. 15 And one study revealed that the impact of a spouse's death on the survivor's physical and emotional health may be more profound on elderly men than on elderly women. 16 Elderly men are at greater risk of dying after the death of a spouse, but both sexes have shown a risk of dying after a spouse's death.
Hegge and Fisher interviewed two groups of community-dwelling “widows”—in this study the term referred to both men and women—ages 60 to 74 (“seniors”) and ages 75 to 90 (“elders”) to determine how a spouse's death compounded the effects of other concurrent losses. 17 Not surprisingly, the “elders” were more likely to have had several more recent losses than the “seniors” and also were more concerned about physical decline and reported more frequent sleeping and eating disorders. Asked to identify their most troubling problem, the elder widows most often cited, “being lonely in an empty house” (60%), whereas the senior widows most often cited “financial and legal issues”(23%) and “being lonely in an empty house”(23%). Both elder and senior widows feared becoming too dependent on others, felt socially awkward, and had comparable difficulty in making decisions. The elder widows depended on their children throughout their grieving, whereas the senior widows relied at first on their children and later on friends. Interestingly, 50% of the senior widows and 70% of the elder widows reported occasionally sensing the “presence” of the deceased at home. Most found the experience comforting but were reluctant to tell family members, fearing their reactions.
Easing the effects of cumulative loss. Findings of these and other studies suggest areas of end-of-life care that require greater attention. Hegge and Fischer state that elderly people who have outlived their spouses and peers need an attentive listener when they reminisce, for example. 17 They also suggest that in focusing on the needs of others (through volunteer work, for example), bereaved spouses often can find the affection and companionship they themselves need. Herth points to the importance of hope and constructive coping styles (such as expressing emotion and finding support) in the resolution of grief 15 (see “Grief and Bereavement Care,” September).
MYTH: OLDER PEOPLE DON'T FEEL MUCH PAIN
Pain assessment and management in older adults have been described well in the literature and in nursing textbooks, and many sources address pain at the end of life specifically. 18–21 Yet clinicians continue to hold many misconceptions of pain assessment and management, especially concerning the elderly. In a survey taken by Closs, nurses often exaggerated the risk of opioid-induced respiratory depression and viewed pain and discomfort as unavoidable aspects of aging, 22 inaccurate beliefs that place older adults at risk for undertreatment of pain. 23,24 Elderly nursing home residents may be at even greater risk. Daily, persistent pain among them is common, 1 according to Last Acts. One national study found that almost one-sixth were in pain daily, and that more than 40% of those reporting pain on first assessment were still in pain 60 to 180 days later. 25 Another study conducted in U.S. nursing homes showed that 45% to 80% of all residents were in pain and that 66% of them continued to suffer because of inadequate pain treatment. 26
If there is to be improvement in this area, current knowledge must be brought to bear on clinical practice. The dissemination of research and the evaluation of “best practices” are imperative. Although elderly patients are at greater risk of concurrent painful conditions, pain is not an inevitable part of aging. A thorough assessment to determine the source of a patient's pain must be performed. The neurophysiologic processes necessary for nociception—the perception of pain—remain unaltered by age.
Older adults may underreport pain because they, too, believe it to be inherent to aging, or they may think that acknowledging it will alarm their loved ones or lead to loss of independence. But a lack of acknowledgment doesn't indicate a lack of pain, and assessment should not be made solely on the basis of the patient's behavior. The patient's ability to sleep, watch television, or engage in other activities does not indicate that he isn't in pain. The critical source in pain assessment is always the patient's own report.
Assessing pain in elderly patients with cognitive impairment can be difficult, but it's not impossible. No standard approach exists, however. A study conducted in Michigan nursing homes showed that more than half the residents reported moderate-to-severe pain, with the cognitively impaired least likely to report it. 27 But another study showed that when providers used standardized pain scales, cognitively impaired older adults were able to describe current, usual, and worst pain. 18 Other researchers found that the MDS pain-assessment scale, which measures pain intensity and frequency, was easier to administer to older patients than was a visual analogue scale. 27 These findings suggest that older adults, even those who are cognitively impaired, can more easily report pain when assessed with the right tool (see Pain Control, “Pain Assessment in Cognitively Impaired Older Adults,” December 2002).
Treating pain in elderly patients near the end of life. Opioids may be used safely to treat pain in elderly patients, even those who are opioid naive. 24 Dosing should “start low and go slow” because aging changes how the body metabolizes and eliminates medication––gradual titration and frequent monitoring are crucial. Because older adults may experience a higher peak effect and longer duration of action, a 25% to 50% reduction in the starting opioid dose is recommended. Older patients at greatest risk of inadequate pain relief are those who abuse alcohol or drugs, are reluctant to report pain, are frail and debilitated, or are cognitively impaired. In elderly patients it's also important to use the least invasive route of administration, to use short-acting analgesia for episodic pain, and to maintain 24-hour dosing for continuous pain. 23,24,28
One recent retrospective study compared hospice and “nonhospice” residents who had daily pain at the end of life. In a sample of more than 800 nursing homes in five states, researchers used MDS data to examine pain management. Findings showed that pain was managed better among those enrolled in hospice programs than among nonhospice patients. Many participants received either no analgesic for daily pain or treatment inconsistent with standard guidelines. 1,29
MYTH: ADVANCE DIRECTIVES OFTEN GUIDE CARE
Advance directives are formal documents used to elicit and record a person's preferences for end-of-life care. There are two types––the living will and the durable power of attorney for health care. The living will documents the kind of treatment a patient wishes to receive, and the durable power of attorney for health care designates a proxy to make health care decisions if the patient is unable to do so. (See “Ethical Concerns in End-of-Life Care,” January.)
Despite the Patient Self-Determination Act of 1990, which specifies that providers must tell patients about advance directives, as well as a widely held belief that it's important to complete an advance directive, 30 few people have actually done so. Last Acts acknowledged one study's finding that only 15% to 20% of the general population has an advance directive. 1 Inman surveyed a convenience sample of 55 older adults (mean age, 70) and found that 92% of them had heard of advance directives and that 78% had discussed their end-of-life wishes, but many were deterred from writing a directive in part by an unwillingness to talk about declining health and death. 31 Other researchers have reported comparable findings. 31,32 Yet such discussions must occur before the writing of an advance directive. White and colleagues found that even nurses who were oncology specialists felt unprepared to discuss death and dying with patients and their families. 33
Planning is essential if preferences for end-of-life care are to be honored, but Drought and Koenig point out that there is no clear evidence as to which approaches facilitate decision making. 34 They note that what appears to be collaboration in the making of such decisions is often false: the ill patient tends to defer to physicians, and physicians try to spare the patient difficult decisions. Moreover, patients may feel differently about choices made in advance once they are dying. And in many instances, health care decisions are determined not by the patient's preferences concerning treatment but rather only by available options.
Dementia complicates the ways in which preferences in end-of-life care are determined. Forbes and colleagues explored family decision making in regard to nursing home residents with dementia and found that the guilt from placing a loved one in a nursing home was overwhelming to family members. 35 As the resident's illness progressed, this emotional burden was aggravated; “life was drastically altered by the disease” with an increase in “unanticipated changes in goals, retirement plans, and ability to engage in meaningful day-to-day activities.” Conflicting feelings were expressed: death was welcome one minute and seen as tragic the next. In participating families, the unpredictability of a loved one's illness led to confusion regarding how to maintain or improve the quality of his life, which was compounded by a lack of information from providers who might have helped. Hiltunen and colleagues studied nurse narratives in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), which indicated that, initially, family members felt tremendous conflict in making end-of-life decisions for a loved one and that vacillation was the typical response “when no option seemed truly acceptable.”36
Helping people to make decisions. The results of several studies confirm that providers, particularly nurses, are vital to helping patients and families make end-of-life decisions. The SUPPORT trial demonstrated that nurses often were the first to recognize that a patient was approaching death. 5 Patients often expressed to them their concerns about decision making (do-not-resuscitate orders, for example). Yet physicians often did not know their patients’ preferences; only 46% of them in the SUPPORT trial knew when their patients preferred to forgo cardiopulmonary resuscitation, for example.
Norton and Talerico described communication strategies providers used that helped terminally ill elderly patients and their families to make decisions. 37 These included communicating clearly, avoiding euphemisms and vague or ambiguous language, and being specific about treatment goals and expectations. The researchers noted the importance of using the words “death” and “dying”; avoiding them was perceived as a “mixed message” by these patients and their families. They also advised caution in using words like “hope” because their meaning may change with time (“hope” may at first refer to cure and later to a peaceful death, for example).
Norton and Bowers considered how terminally ill patients and their families made end-of-life decisions and found that providers were pivotal in helping to shift focus when the patient's condition changed “from one of chronic illness to one of impending death.”38 Providers first had to make the patient's condition clear to patient and family. Other strategies included collaborating with other providers and repeating information to the patient and family. Patients and families who couldn't relinquish unattainable goals were more likely to make decisions that led to “useless pain and suffering.” But when patients and families were able to change their perspective, they were able to “accept the previously unacceptable” and make better decisions about treatment.
CASE REVISITED
When Ms. Nolcher realized that she could no longer live independently at home, she had to choose a setting in which to receive care. She discussed the options with her providers and her children. Kathy, her eldest daughter, took a temporary leave from her job to care for her mother and attended several meetings with providers. Ms. Nolcher didn't want to live with any of her children because she feared being a burden to them, and the prospect of “strangers” providing home care made her uneasy. But she had visited friends at a nursing home in her community. She told Kathy, “Maybe I should go to the nursing home for a while,” adding that she hoped that rest and “good food” would help her to regain her strength. Kathy made arrangements for her mother's placement.
On admission, Ms. Nolcher faced more decisions. She had previously discussed with her children her preferences for end-of-life care, and the conversations had focused principally on what she did not want––to be “hooked up to tubes” or confined to bed. Now many of the admitting nurse's questions concerned what she did want, including “Do you want to receive cardiopulmonary resuscitation?” “Do you want antibiotics?” and “Do you want to be admitted to the hospital?” Fortunately, Ms. Nolcher had recently talked with her children about these matters and able to answer “no” to each of the questions. And she did have a durable power of attorney for health care in place, naming Kathy her health care proxy. She felt confident that her daughter would convey her wishes if needed.
As illness progressed, Ms. Nolcher's epigastric pain and discomfort grew, as did swallowing difficulty. The pain, which she rated a 3 on a 0-to-5 visual analogue scale, was only partially alleviated by acetaminophen. She also had increasingly frequent episodes of dyspnea that frightened her. Kathy thought that her mother would benefit from hospice care, but no formal hospice program had been implemented at the nursing home, where the nurses had not received appropriate training and there were no protocols for managing pain and dyspnea in terminally ill patients. The administrators began to negotiate hospice services. Ms. Nolcher received hospice care, beginning six days before her death. Interventions included use of the Fowler position to alleviate dyspnea and oral morphine to relieve pain and dyspnea. Ms. Nolcher died in her sleep, her children at her side.
Complete the CE test for this article by using the mail-in form available in this issue or by going to Online CE atwww.ajnonline.com .
REFERENCES
1. Last Acts. Means to a better end: a report on dying in America today. Washington, DC; 2002. http://www.lastacts.org/files/misc/meansfull.pdf . [Context Link]
2. Administration on Aging, U.S. Department of Health and Human Services. A profile of older Americans: 2002 [Web site]. 2003. http://www.aoa.gov/prof/Statistics/profile/profiles2002.asp . [Context Link]
3. Amella E. Geriatrics and palliative care: collaboration for quality of life until death. Journal of Hospice and Palliative Nursing 2003; 5( 1):40–8. [Context Link]
4. Field M, Cassell C, editors. Approaching death: improving care at the end of life (report of the Institute of Medicine Task Force). Washington, DC: National Academy Press; 1997. [Context Link]
5. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators. JAMA 1995; 274( 20):1591–8. [Context Link]
6. Forbes S. This is heaven's waiting room: end of life in one nursing home. J Gerontol Nurs 2001; 27( 11):37–45. [Context Link]
7. Kayser-Jones J. The experience of dying: an ethnographic nursing home study. Gerontologist 2002;42 Spec No 3:11–9. [Context Link]
8. Travis SS, et al. Obstacles to palliation and end-of-life care in a long-term care facility. Gerontologist 2002; 42( 3):342–9. [Context Link]
9. McCue JD. The naturalness of dying. JAMA 1995; 273( 13): 1039–43. [Context Link]
10. Lynn J, et al. Perceptions by family members of the dying experience of older and seriously ill patients. Ann Intern Med 1997; 126( 2):97–106. [Context Link]
11. Ruegg M, et al. Caring connections: enhancing end-of-life care in a retirement community. Health Progress. in press. [Context Link]
12. Davidson KM. Evidence-based protocol: family bereavement support before and after the death of a nursing home resident. J Gerontol Nurs 2003; 29( 1):10–8. [Context Link]
13. Tuch H, et al. Integrating palliative care into nursing homes: an interview with Howard Tuch and Pam Parrish. J Palliat Med 2002; 6( 2):297–309. [Context Link]
14. Rosenzweig A, et al. Bereavement and late-life depression: grief and its complications in the elderly. Annu Rev Med 1997; 48:421–8. [Context Link]
15. Herth K. Relationship of hope, coping styles, concurrent losses, and setting to grief resolution in the elderly widow(er). Res Nurs Health 1990; 13( 2):109–17. [Context Link]
16. Byrne GJ, Raphael B. A longitudinal study of bereavement phenomena in recently widowed elderly men. Psychol Med 1994; 24( 2):411–21. [Context Link]
17. Hegge M, Fischer C. Grief responses of senior and elderly widows. Practice implications. J Gerontol Nurs 2000; 26( 2):35–43. [Context Link]
18. Chibnall JT, Tait RC. Pain assessment in cognitively impaired and unimpaired older adults: a comparison of four scales. Pain 2001; 92( 1–2):173–86. [Context Link]
19. Herr K. Pain assessment in cognitively impaired older adults. Am J Nurs 2002; 102( 12):65–7. [Context Link]
20. Herr K. Chronic pain in the older patient: management strategies. 2. J Gerontol Nurs 2002; 28( 2):28–34; quiz 54–5. [Context Link]
21. Ferrell BA. Pain evaluation and management in the nursing home. Ann Intern Med 1995; 123( 9):681–7. [Context Link]
22. Closs SJ. Pain and elderly patients: a survey of nurses’ knowledge and experiences. J Adv Nurs 1996; 23( 2):237–42. [Context Link]
23. Jacox A, et al. New clinical-practice guidelines for the management of pain in patients with cancer. N Engl J Med 1994; 330( 9):651–5. [Context Link]
24. Pasero C, et al. Pain in the elderly. In: McCaffery M, Pasero C, editors. Pain: a clinical manual. St. Louis: Mosby; 1999. p. 674–710. [Context Link]
25. Teno J, et al. The prevalence and treatment of pain in U.S. nursing homes. Providence: Center for Gerontology and Health Care Research, Brown University; 2002. http://www.chcr.brown.edu/commstate/painmonographwebversion.pdf . [Context Link]
26. Stein WM, Ferrell BA. Pain in the nursing home. Clin Geriatr Med 1996; 12( 3):601–13. [Context Link]
27. Fries BE, et al. Pain in U.S. nursing homes: validating a pain scale for the minimum data set. Gerontologist 2001; 41( 2):173–9. [Context Link]
28. Clinical practice guidelines: the management of chronic pain in older persons. Journal of the American Geriatric Society 1998; 46( 5):635–51. [Context Link]
29. Miller SC, et al. Does receipt of hospice care in nursing homes improve the management of pain at the end of life? J Am Geriatr Soc 2002; 50( 3):507–15. [Context Link]
30. High DM. Advance directives and the elderly: a study of intervention strategies to increase use. Gerontologist 1993; 33( 3):342–9. [Context Link]
31. Inman L. Advance directives. Why community-based older adults do not discuss their wishes. J Gerontol Nurs 2002; 28( 9):40–6. [Context Link]
32. Hamel CF, et al. Advance directives and community-dwelling older adults. West J Nurs Res 2002; 24( 2):143–58. [Context Link]
33. White KR, et al. Are nurses adequately prepared for end-of-life care? J Nurs Scholarsh 2001; 33( 2):147–51. [Context Link]
34. Drought TS, Koenig BA. “Choice” in end-of-life decision making: researching fact or fiction? Gerontologist 2002;42 Spec No 3:114–28. [Context Link]
35. Forbes S, et al. End-of-life decision making for nursing home residents with dementia. J Nurs Scholarsh 2000; 32( 3):251–8. [Context Link]
36. Hiltunen EF, et al. Family decision making for end-of-life treatment: the SUPPORT nurse narratives. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. J Clin Ethics 1999; 10( 2):126–34. [Context Link]
37. Norton SA, Talerico KA. Facilitating end-of-life decision-making: strategies for communicating and assessing. J Gerontol Nurs 2000; 26( 9):6–13. [Context Link]
38. Norton SA, Bowers B. Working toward consensus: providers’ strategies to shift patients from curative to palliative treatment choices. Res Nurs Health 2001; 24( 4):258–69. [Context Link]