Palliative Care for Frail Older Adults: Title and subTitle Break“There Are Things I Can't Do Anymore That I Wish I Could . . . ”

Mrs K is an 89-year-old woman with multiple medical problems and declining physical function. Dr T has cared for her since 1985. She has long-standing coronary artery disease with a history of myocardial infarction and had undergone 4-vessel coronary bypass graft surgery in 1991. Since 2001, she has been treated for atrial fibrillation and congestive heart failure (CHF) with warfarin, digoxin, furosemide, enalapril, potassium, and aspirin. Mrs K also has gastroesophageal reflux disease, hypothyroidism, and migraine headache, managed with famotidine, L-thyroxine replacement, and low-dose amitriptyline prophylaxis, respectively.

Mrs K lives at home with her son. She is resolutely independent in cooking, bathing, and dressing, but her son helps her with her medical appointments and other instrumental activities of daily living (ADLs), such as shopping, transportation, and finances.¹ Mrs K came to Dr T's practice about every 3 months until February 2005 when she stated that she was too weak to make the trip any longer, and Dr T started making every-other-month, then monthly, home visits.

Between March and June 2005, Mrs K had 3 hospitalizations, 1 for CHF and 2 for excessive anticoagulation, delirium, and hyponatremia. Thereafter, she decided that she never wanted to go back to the hospital. Over time, despite a reasonably good appetite and steady food intake, she lost weight, declining from 124 to 110 lb (55-49 kg) between February and August 2005. She fell several times, and she had increasing difficulty managing her medications.

In July 2005, noticing Mrs K's declining status and progressive weight loss, Dr T broached the possibility of hospice care. She and her son were unsettled by the hospice worker's discussion of end-of-life care and hospice services, so Mrs K declined. In September 2005, Mrs K had another CHF exacerbation that was treated at home. Dr T then had a long discussion with Mrs K and her son about her uncertain prognosis and the benefits of early hospice enrollment, which included in-home support services that would facilitate her remaining at home, receiving medication management to help prevent hospital readmission, and building a trusting relationship with hospice personnel. He reassured them that he would continue to be Mrs K's physician and would work with the hospice agency. Mrs K enrolled in a community home hospice program on September 23, 2005.

As of a visit on October 24, 2005, Mrs K was stable and functioning reasonably independently, with “good” and “bad” days. A housekeeper and a hospice nurse came twice weekly. The hospice agency brought morphine, atropine, and lorazepam for use as needed, and Dr T explained to Mrs K that these were for symptom relief in case of an emergency.

A Perspectives editor interviewed Mrs K and Dr T in November 2005.

MRS K: I think I've gone about as far as I can go without dying . . . At 89 years old, I think I can't be going much longer. I think I look pretty good with what I have, but I know I'm not going to last forever.

DR T: She's had a very long history of heart disease. . . . I would always marvel that she could manage to [come to clinic to see me] over the last year. . . . She's very frail but able to get around at home and do the things she wants to do.

Mrs K and Dr T’s narrative portray a syndrome of decline in function and health that is consistent with the emerging concept of frailty. Mrs K's case helps to illustrate the challenges of recognizing frailty in clinical practice, the common problems and symptoms experienced by frail older adults, and the approaches that clinicians can incorporate into their practices, including geriatric palliative care and hospice referral.

Frailty has been conceptualized as a diminished capacity to withstand stress that places individuals at risk for adverse health outcomes.² Frailty is progressive, is associated with chronic disease, worsens with advancing age, and is often marked by a transition from independence in ADLs to dependence on caregivers. Given that frailty is associated with symptomatic long-term disease, decline in function, and abbreviated survival,² when frailty becomes severe, delivery of palliative care focused on relief of suffering and enhancing quality of life is appropriate.³ Treating these patients' complex social, psychological, and medical needs requires state-of-the-art geriatrics knowledge and is best accomplished via a multidisciplinary, team-based approach.

Frailty manifests the following clinical features: loss of strength, weight loss, low levels of activity, poor endurance or fatigue, and slowed performance.^{4 - 5} The presence of 3 or more of these features, a threshold most widely used in the investigative literature,^{4 - 6} is associated with a range of adverse outcomes including falls, new or worsened ADL impairment, hospitalization, and death.⁵ Other proposed features of frailty include impairments in cognition, balance, motor processing and emotional status, low self-rated health, and deficient social support.^{7 - 10} Although many frail older adults have long-term medical conditions and may be disabled when frailty is recognized, in the Cardiovascular Health study,⁵ 63% of frail patients had no ADL impairment and 32% had none or only 1 of 9 common long-term diseases. The association of frailty with adverse outcomes is independent of the presence of other medical conditions.⁵ This has led to the concept of primaryfrailty, in which frailty occurs in the absence of significant overt disease, in contradistinction to secondaryfrailty, which is associated with known advanced disease (as in Mrs K's case). Individuals with secondary frailty may have worse prognoses than those with primary frailty, as suggested by a study in which patients with diabetes, cancer, heart failure, and lung disease had worse 4-year survival independent of features such as low weight and decreased walking.¹¹

The biological basis of frailty is postulated to involve a cycle of age- or disease-related physiological decline that includes loss of skeletal muscle mass, changes in endocrine function, and chronic inflammation.³ Rates of loss of muscle mass and strength accelerate after age 50 years and again after age 75 years, with observed changes in type I muscle fibers and muscle atrophy.¹² Endocrine changes associated with aging and disease include decreases in estrogen, testosterone, growth hormone, and insulin-like growth factor 1, each of which has been implicated in muscle loss.^{13 - 15} Levels of proinflammatory cytokines, such as interleukin 6 and C-reactive protein, are persistently elevated in subpopulations of older adults and in those who are frail.^{16 - 17} These laboratory findings provide a growing physiological understanding of frailty but are not operationalized for clinical diagnostic use, and to date frailty remains a diagnosis of history and physical examination findings.

DR T: She's just gradually begun to lose weight. I also found that it was more difficult for her to monitor her medications.

MRS K: My housekeeper comes to help me out. There are things I can't do anymore that I wish I could.

Practitioners can adapt investigative criteria to identify physically frail older adults by asking patients about declines in strength, endurance, nutrition, physical activity, fatigue or decreased energy, and slowed performance and by examining patients for weakness, weight loss, and slowed gait speed. Operational definitions of these features of frailty and assessment methods are presented in Table 1. Despite the high face and prognostic validity of these features, recognizing physical frailty in clinical practice may not be straightforward. First, frailty does not fit into classic organ-specific models of disease, and it may not be evident to clinicians, family members, or patients themselves that there is a decline in health. Second, gradual declines in strength, endurance, and nutrition may not cause patients to seek medical attention and may hinder their doing so. Third, some patients, family members, or clinicians may attribute these declines to old age and not appreciate that a clinical response is indicated.^{32 - 33}

Timely recognition of frailty is important because it may enable early identification of potentially treatable underlying conditions, such as malignancy, rheumatologic disease, major depression, chronic infection, a gastrointestinal disorder,³ or an adverse medication effect. Early recognition is also important in order to introduce geriatric and palliative care approaches. By no means a substitute for a diagnostic work-up, timely palliative, symptom-driven care ensures that patients and families receive care that optimizes quality of life and relieves suffering. This is especially true for those with frailty secondary to an advanced symptomatic condition, as in the case of Mrs K. It is useful to divide frailty into 3 stages—early, referring to the time of frailty recognition; middle, referring to onset of function decline; and late, referring to increasing function decline, life-threatening illness, and imminent death—in which different geriatric and palliative services may be appropriate^{3 ,34} (Table 2).

DR T: We've talked pretty openly about the fact that her heart failure has progressed. . . . I had a long discussion with her some years ago about DNR-DNI [do not (attempt) resuscitation–do not intubate] status and she agreed to that right away.

MRS K: When I was sick the last time, my doctor seemed to think I was going to get better, but I didn't think so. . . . When I'm having [breathing problems], I think that this might be it. . . . I have a DNR. . . . My son knows where the papers are. He knows what I want.

Discussions of goals of care are routinely indicated at the time that patients are identified as frail. Often patients at this stage have been recently hospitalized (like Mrs K), may be suffering out of proportion to their diagnosis or prognosis, and may be expected to survive no more than 6 to 12 months, any of which is an indication for such discussions.³⁶ For patients with advanced frailty, procedures intended to diagnose an occult condition, such as cancer, to treat it, and to prolong life may be more burdensome than beneficial.³ In addition, studies suggest that the highest priorities of patients with serious end-stage conditions, such as cancer, end-stage kidney disease, or ADL disability, are to have their pain and other symptoms relieved, to have their quality of life optimized, to avoid being a burden to their family, to have a closer relationship with loved ones, and to maintain a sense of control.^{37 - 38} This benefit-burden tradeoff may be harder to estimate in patients with early- or middle-stage frailty whose prognosis may not be as clear. Nevertheless, establishing goals in advance of expected medical events, such as the CHF exacerbation in Mrs K's case, can facilitate decisions about burdensome treatments that might arise in pressing situations. For example, after Mrs K instructed Dr T that she did not want to be hospitalized again, Dr T managed her next CHF exacerbation at home.

Discussions of goals of care is a core competency of geriatric medicine and of palliative medicine.^{34 ,38} Conversations should be guided initially by open-ended questions appropriate for patients whose prognosis is uncertain, such as, “How do you think about balancing quality of life with length of life?” “What are your most important hopes?” “Would there be any circumstances under which you would find life not worth living?” and “What do you consider your quality of life to be like now?”³⁶ Once goals are established, they can be used to construct advance directives about specific care interventions, such as cardiopulmonary resuscitation and hospitalization and appointment of a health care proxy.³⁶

MRS K: A bad day is one like last Wednesday. I started having trouble breathing and it got very bad. A nurse came out and put me on oxygen. . . . I felt a lot better the next day. The nurse came again and was very surprised and pleased to see my improvement.

By current definition, frail patients will experience 3 or more signs and symptoms of weakness, weight loss, low level of activity, poor endurance or fatigue, and slowed performance. Practitioners may also encounter pain, depression, or other symptoms in frail patients, as well as common geriatric syndromes, such as falling. Symptom relief is indicated in all patients, independent of prognosis or other care objectives. Studies show that improved symptom control is associated with higher functional status, better quality of life, and greater patient and family satisfaction.^{39 - 40}

The Article lists principles of symptom assessment and management, often applied in geriatric and palliative medicine, that should be applied in the care of frail older adults. In addition to the approaches presented in the Article and Table 1, other assessment instruments for use in clinical practice are found on the Web site of the International Association for Hospice and Palliative Care (http://www.hospicecare.com/resources/pain-research.htm).

Symptom management should be based on evidence from available clinical trials.^{26 ,42 - 43} Recommendations for symptom management are also available in open-access sources⁴⁴ and in previous articles in this series.⁴⁵ In the following sections, we will discuss management of several defining symptoms of frailty, namely weakness, fatigue, and weight loss. Depression is also addressed because it is significantly more common in frail than nonfrail older adults.^{5 - 6} In the Cardiovascular Health Study, 31% of frail patients had depressive symptoms.⁵ Although falling is not discussed in detail, approaches to its evaluation and management are included in Table 1 and are available in open-access guidelines.³¹

Weakness. For frail older adults who report weakness, several studies have suggested that exercise can improve strength and balance and reduce falls. In the Frailty and Injuries: Cooperative Studies of Intervention Techniques trial, lower extremity resistance training 3 times weekly for 10 weeks increased lower extremity strength from 26% to 179% (4.9-9.3 kg; absolute increase in maximal weight lift; P<.001 for comparison with control group), and gait velocity of 8.6% (0.04 m/s absolute speed increase over a 6.1-m course; P = .02).⁴⁶ Other studies, including one of very frail nursing home residents,⁴⁷ showed less or no benefit from exercise.⁴⁸ A systematic review of 41 studies involving 1955 older adults supported a beneficial effect of progressive resistive strength training on gait speed and lower extremity strength in older adults with and without health problems.⁴⁹ Tai Chi exercise—consisting of slow, rhythmic movements that emphasize trunk rotation, weight shifting, coordination, and gradual narrowing of lower extremity stance—showed a nonsignificant reduction in falls (risk ratio, 0.75; 95% confidence interval, 0.52-1.08) in 311 frail residents of congregate living facilities.²¹

Fatigue. Fatigue may be mediated by interventions designed to decrease energy expenditure. Patients can be instructed to modify the environment (eg, move the telephone closer, use a bedside commode), adjust room temperature, reorder tasks to conserve energy (eg, eat first, rest, then bathe), and modify daily procedures (eg, sit while showering).²² On the other hand, increasing physical activity may improve energy level and physical functioning, among other health benefits.²³ Pharmacological management of fatigue should first reduce or eliminate medications that cause fatigue, such as β-blockers, tricyclic antidepressants like the amitriptyline that Mrs K was receiving, and sedating antihistamines. Although evidence is sparse for prescription of psychostimulants in this population, the following agents have been suggested in geriatrics literature for fatigue²² : 5 to 10 mg of methylphenidate taken orally once in the morning or twice a day, 2.5 mg of dextroamphetamine taken orally once in the morning or twice a day, or 200 mg of modafinil taken orally each morning. Patients treated with these drugs should be monitored for hypertension, tachycardia, psychosis, agitation, or sleep disturbance. Finally, in our experience, identifying and treating remediable conditions, such as CHF, anemia, depression, and insomnia, may also improve patients' energy levels.

Weight Loss. Data supporting the use of commercial nutritional supplements (eg, Ensure) for frail patients with weight loss is limited. A systematic review of 34 trials involving 2484 participants suggested that supplements containing protein and calories have small effects on weight gain (pooled percentage weight gain, 2.3%; 95% confidence interval, 1.9%-2.7%) and no effect on strength or function.¹⁸ This small effect may be because the physiological processes that underlie weight loss in frailty are low-grade inflammation and neuroendocrine dysregulation, not starvation or inadequate intake.³ Nevertheless, it is reasonable to encourage high-calorie, vitamin-fortified, and nutritious foods for all frail patients with weight loss. Clinicians can promote interest and enjoyment in meals by recommending foods of choice, an alcoholic beverage if desired, and small frequent meals. Good oral care and addressing denture problems are also important, as is access to nutritious foods for patients with limited financial or shopping resources.

No drugs are approved by the US Food and Drug Administration to promote weight gain in older adults. However, megestrol, a synthetic derivative of progesterone, improved weight in a randomized, double-blind, placebo-controlled trial involving 69 nursing home residents with weight loss or low body weight¹⁹ ; it also stimulated appetite in a trial of 47 older adults discharged from the hospital.²⁰ Its use in frail older adults should be considered with caution because it can cause cortisol suppression and thromboembolism.²⁰ It is not covered by Medicare part D. Other orexigenic (ie, appetite promoting) agents—such as corticosteroids, cannabinoids, thalidomide, growth hormone, and androgens—have not been studied in frail older adults or are associated with adverse effects that make them unacceptable for routine use. Treatment of underlying conditions may promote weight gain, including hormone replacement in cases of hormone deficiency (eg, testosterone for men with repeated serum testosterone levels <200 ng/dL [<6.94 nmol/L])⁵⁰ and treatment of depression in frail patients with weight loss and depression.⁵¹

Depression. Treatment of depression in frail older adults should be individualized based on history of depression, past response to treatment, severity of depression, and concurrent illnesses.^{28 ,52} Serotonin reuptake inhibitors (SSRIs) and tricyclic antidepressants appear to have the same efficacy, with SSRIs demonstrating a better adverse-effect profile in older adults,²⁹ although both classes are associated with an increased risk of falling.³⁰ Serotonin reuptake inhibitors require 3 to 4 weeks to take effect, and maintenance treatment is recommended for at least 12 months after remission.²⁸ Cognitive-behavioral psychotherapy may be useful for patients with mild or moderate depressive symptoms or anxiety disorder, with some modification of treatment for frail patients (eg, administered at a slower pace).⁵³ Physicians or counselors can help ease the psychological distress of older patients facing the end of life by offering them an opportunity to reflect on concerns, feelings, relationships, past experiences, and hopes, using communication techniques, such as asking open-ended questions, listening, and reflecting on emotions. These encounters may facilitate the patient's ability to accept the approach of death and to use remaining time well.⁵⁴

Symptom self-management support involves helping patients and their families acquire the skills and confidence to manage their illness.⁵⁵ Education and support can also help patients and families weather the variable, day-to-day nature of common symptoms and their effect on ADLs⁵⁶ as well as to prepare for an emergency³⁵ ( Article ). Finally, effective symptom management may require multiple therapeutic components (pharmacological and nonpharmacological) or involvement of multiple disciplines. This approach is a foundation of geriatrics and is based on the demonstrated effectiveness of programs of care that provide assessment and targeted remediation of multiple factors in preventing falls⁵⁷ and delirium.⁵⁸ Clinicians may have to increase the frequency or duration of contacts, make home visits, and expend extra effort to be accessible to the patient, as modeled by Dr T’s home visits with Mrs K. Use of telephone contacts and telehealth devices to monitor symptoms, such as pain and dyspnea, and to measure daily weight may enhance the clinician’s efficiency and efficacy.

MRS K: My doctor . . . visits me at my home once a month. . . . He has taken good care of me, and he's familiar with my heart doctors. He's been keeping track of me, . . . and that's why I'm doing so good.

DR T: She decided to cash in on the longstanding promise that . . . I would go to visit her at home and . . . arrange for home services.

Several studies demonstrate that the personal and practical care needs of patients who are seriously ill and their families are not adequately addressed by routine office visits or hospital and nursing home stays.^{59 - 63} In this regard, in the past decade, increases in Medicare reimbursement for physician home visits have made home visits economically viable. Reimbursement mechanisms have also been developed for physicians providing oversight for homebound patients receiving acute skilled nursing care.

Comprehensive care programs are also available to help physicians manage the care of patients with serious and complex illnesses, including palliative care and hospice programs, and geriatric medicine programs with home care components (eg, Program of All-inclusive Care for the Elderly [PACE]). Referral for comprehensive geriatric assessment and management includes assessment and management of cognitive, physical, and psychosocial conditions and function. When used as the basis for ongoing care, such specialty care reduces decline in physical function and reduces nursing home use by vulnerable older adults.^{64 - 65} Geriatric care managers and home care personnel can help connect patients to services unfamiliar to physicians.

Mrs K's case illustrates the danger of iatrogenic harm to frail older adults and the important role of care continuity and advance directives in avoiding hospitalization and medication hazards. When Mrs K was taken to an unfamiliar hospital for CHF, her episode of care was complicated by life-threatening problems—excessive anticoagulation, delirium, and hyponatremia. In contrast, when Mrs K was treated for CHF at home by Dr T, it resolved without complication. Medication adverse effects may occur more commonly in older age and in patients with function impairment, and medications are often inappropriately prescribed, misused, and inadequately monitored, especially during transitions between care settings.^{66 - 67} The possibility that amitriptyline contributed to Mrs K's symptoms of falling and fatigue should be considered, for example. Avoidance of iatrogenic harm is also a priority of geriatric palliative medicine. Pharmacy and geriatric consultants may provide decision support to clinicians that reduces the likelihood of adverse drug effects in inpatient and nursing home settings.^{68 - 69} Easy-to-navigate, electronic drug databases on personal digital assistants may also help clinicians optimize drug regimens during the flow of care.

DR T: When we talked about hospice in August, she was a little skeptical because she thought it was for people who were dying and she didn't think that she was dying. Neither did I, then.

For patients with late-stage frailty, referrals to palliative care and hospice programs are appropriate to assist primary care clinicians in the management of symptoms, advance care planning, and care coordination³⁴ (Table 2). Palliative care programs are increasingly prevalent in the United States and provide comprehensive interdisciplinary care for patients and families in collaboration with primary care physicians.⁷⁰ Hospice services, under the Medicare benefit and many private insurance plans, are available in most US communities and provide palliative care for patients with a life expectancy of 6 months or less who are willing to forgo insurance coverage for life-prolonging treatments. Studies suggest that referral to palliative care programs and hospice results in beneficial effects on patients' symptoms, reduced hospital costs, a greater likelihood of death at home, and a higher level of patient and family satisfaction than does conventional care.^{62 ,71 - 73} The advantage of hospice under Medicare is that it provides a level of services, medication (eg, oxygen for Mrs K), equipment (eg, commode, bedpans, and protective undergarments), around-the-clock home coverage, and bereavement support for families that is greater than that provided by any other payment mechanism—beyond what a geriatric or palliative care interdisciplinary team is reimbursed for.

Some patients have misconceptions that participation in palliative care or hospice programs requires that they forgo all treatments⁷⁴ and accept an accelerated course toward death. In contrast, hospice patients with Mrs K's profile would be expected to continue to take medication for long-term conditions like CHF because they play an important role in symptom control. In addition, even though the majority of patients who enroll in hospice die, a significant number improve and are discharged. Patients who subsequently need to reenroll are eligible to do so as long as they meet hospice criteria.

DR T: The hard part about frailty is figuring out when people are frail enough to qualify for hospice. . . . She really barely qualifies, except that I was willing to sign the form. I think she does have less than 6 months to live at this point, given the frequency of her exacerbations and her general decline.

Eligibility for hospice services requires a physician to certify that the patient is likely to die within 6 months “if the disease follows its usual course” and the patient agrees to forgo regular Medicare or other insurance coverage in favor of hospice coverage.³⁴ Home-dwelling older adults with ADL impairment also generally need a caregiver to interface with the hospice team and let hospice team members into the home. Predicting 6-month survival is difficult because death from frailty, like dementia, is often caused by infections and other complications that are unpredictable.⁷⁵ The National Hospice and Palliative Care Organization published guidelines for determining prognosis for noncancer diseases that can be applied to frail older adults. Guideline criteria include: multiple emergency department visits or inpatient hospitalizations over the prior 6 months; a recent decline in functional status; and unintentional, progressive weight loss of more than 10% over the prior 6 months.⁷⁶ Medicare intermediaries' medical review policies modify these guidelines in each region of the country,⁷⁴ and some hospices restrict their enrollment to reduce the likelihood of a denied payment or fraud allegations.⁷⁴ One study of hospices in California found that larger hospices and those that were part of a chain had less restrictive enrollment practices.⁷⁷ Our advice to clinicians is to become familiar with local hospices and their enrollment guidelines and covered services and become familiar with the region's intermediary review policies. Physicians should document the rationale for referral of a frail patient to hospice using vocabulary endorsed by local hospices. Physician documentation should indicate that “medical judgment suggests this patient has end-stage frailty and 6 months or less to live if the disease follows its usual course.”

Challenges for physicians in providing care for frail older adults include recognizing frailty when it occurs, engaging in discussions about goals of care; treating symptoms associated with frailty; meeting patients' needs for medical, psychological, and social support; and coordinating care with other providers, disciplines, and organizations. Providing high-quality geriatric and palliative care for frail older adults requires time, effort, and regular communication, but, in our experience, is rewarded by rich professional and personal relationships and satisfaction on par with success in curing disease.