© Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2006.9989
Palliative Care for the Older Adult
JENNIFER KAPO, M.D.,1 LAURA J. MORRISON, M.D.,2 and SOLOMON LIAO, M.D.3
ABSTRACT
The majority of deaths in the United States occur in the geriatric population. These older adults often develop multiple chronic medical problems and endure complicated medical courses with a variety of disease trajectories. Palliative care physicians need to be skilled in addressing the needs of these frail elders with life-limiting illness as they approach the end of life. Although geriatrics and palliative medicine share much in common, including an em-phasis on optimizing quality of life and function, geriatric palliative care is distinct in its fo-cus on the geriatric syndromes and on the provision of care in a variety of long-term care set-tings. Expertise in the diagnosis and management of the geriatric syndromes and in the complexities of long-term care settings is essential to providing high-quality palliative care to the elderly patient. This paper is a practical review of common geriatric syndromes, in-cluding dementia, delirium, urinary incontinence, and falls, with an emphasis on how they may be encountered in the palliative care setting. It also highlights important issues regard-ing the provision of palliative care in different long-term care settregard-ings.
185
INTRODUCTION
T
HE U.S. POPULATION is aging at increasing rates. By 2030, one in five Americans will be age 65 or older. The fastest growing demographic segment of our society, persons age 85 and older, is expected to more than double in size from 3.5 million to 8.5 million within the next 30 years. Currently, the median age of death in the United States is 77 years, and the majority of deaths oc-cur after the age of 65 years.1The geriatric pop-ulation thus composes a substantial portion of those patients who are approaching the end of life.As more people live to later years, a new pat-tern of illness is emerging in the geriatric
popu-lation. Many elders accumulate multiple chronic illnesses that lead to a protracted course of grad-ual decline, disability, and eventgrad-ual death. The course is often accompanied by multiple, fre-quently unpredictable, exacerbations of disease and the need for close medical supervision.2 Moreover, these factors can eventually threaten an individual’s functional independence, requir-ing a change to a different livrequir-ing arrangement for greater assistance. One can identify three general stages of progression in chronic illness: early stage, diagnosis and initial management; middle stage, disease modification where possible and adjustment to functional decline; late stage, preparation for dying. Complex medical regi-mens and fragmentation in our health care
sys-1University of Pennsylvania, Philadelphia, Pennsylvania.
2Section of Geriatrics, Baylor College of Medicine, Houston, Texas. 3University of California, Irvine, Orange, California.
tem complicate the inevitable transitions in care needs and goals of care.
Frail, older persons are quite different from the typically younger patient dying from cancer. A study of palliative care consultations comparing patients age 80 and older to younger patients gives insight into how caring for older adults is uniquely challenging.3 The researchers studied 1184 patients referred to an academic palliative care service over a 38-month period. Results showed that patients age 80 and older had a higher prevalence of dementia and incapacity to make decisions and a lower prevalence of cancer. The study also documented fewer interventions for symptom management and a greater ten-dency to withhold or withdraw life-sustaining treatments in their care. In highlighting these dif-ferences in care by age group, this study supports the notion that expertise in the care of frail, older persons is a necessity for palliative care clinicians to provide high-quality end-of-life care to older persons.
Geriatric patients differ from younger patients in medical and psychosocial domains. Specifi-cally, geriatric patients have a higher prevalence of certain syndromes (like dementia), normal physiologic changes that come with age, variable presentations of disease, and a reliance on a full spectrum of institutional settings for the provi-sion of care. A working knowledge of the com-mon geriatric syndromes allows for a more sys-tematic, comprehensive approach to the complex geriatric palliative care patient. In addition, this essential approach that emphasizes simple, non-invasive interventions when possible may signif-icantly improve the quality of life for geriatric pa-tients as goals of care shift near the end of life.
This paper summarizes some key geriatric medicine knowledge domains needed to provide high-quality hospice and palliative care to elders. Because many geriatric issues have been or will be examined in other papers in this series, i.e., de-pression, wound care, polypharmacy, this review focuses on four very common geriatric syn-dromes relevant to the palliative care specialist. Dementia, delirium, urinary incontinence, and falls are discussed in the context of chronic dis-ease progression through early, middle, and late stages. The final section discusses different sites of care for older persons and is intended to help hospice and palliative medicine clinicians nego-tiate palliative care in various settings.
DEMENTIA
Dementia is a progressive, chronic, and incur-able neurodegenerative disorder that results in many sources of suffering and loss as patients de-velop impairments in memory, judgment, lan-guage, behavior, and function. Multiple types of dementia have been defined, but Alzheimer’s type is by far the most common, followed by vas-cular dementia. The prevalence of dementia in-creases with age from roughly 1% in persons 60–65 years old to approximately 40% of those older than 85 years old.4 The current U.S. popu-lation of patients with dementia is roughly 4 mil-lion persons and is projected to increase 10-fold to approximately 40 million persons in the next 40 years. Because patients with dementia are in-creasingly receiving hospice and palliative care for other life-limiting diagnoses, the palliative care specialist will needs to be proficient in car-ing for those with all stages of dementia. Table 1 is a summary matrix of the issues involved in the care of people with dementia according to the stage of the illness.
Prognosis
After diagnosis, prognosis is the key compo-nent to be included in the discussion during the early stage of dementia. This discussion should be revisited during each stage of the disease and especially at major points of decision making, for example, advance care planning, whether to op-erate on a hip fracture, and whether to place tube feeding after aspiration pneumonia. An estima-tion of prognosis by the physician and an under-standing of this prognosis by the patient or fam-ily is essential to inform the shared decision making between the health care team and the pa-tient/family. The failure to recognize dementia as an incurable and progressive disease may result in inadequate end-of-life care including late re-ferral to hospice.5
However, determining prognosis in dementia is challenging. The most thoroughly studied prognosis guidelines focus on functional indica-tors for persons with Alzheimer’s disease. For ex-ample, the Functional Assessment Staging Scale (FAST) is a staging system that describes the pro-gression of functional decline in demented pa-tients in a series of seven stages. Stage 7 is di-vided into substages, a through e, which describe
further decline in functional status. In a valida-tion study of the FAST staging system, patients who reached the level of 7c (loss of the ability to ambulate without personal assistance) had a mean survival of 3.2 months. Based on the results of this study, stage 7c is included as a criteria for hospice admission on the National Hospice and Palliative Care Organization’s guidelines for non-cancer diagnoses.6 Importantly, however, this study had a very small sample size of 47 patients, and 41% of the patients did not follow a linear, progressive course as is described by the FAST system.
A recent study found different criteria that are better able to identify dementia patients with a
prognosis of 6 months or less.7Researchers cre-ated a mortality risk index derived from the Min-imal Data Set (MDS), a federally mandated stan-dardized collection of nursing home resident data assessed on admission, at quarterly evaluation, and for significant changes in resident health sta-tus. The mortality risk index score risk stratifies patients into levels of risk of 6 month mortality (Table 2). This study also suggested that hypo-active delirium is a marker of poor prognosis in dementia. Patients in this study who were “not awake most of the day” were likely to die within 6 months in the nursing home. Several patient factors that did not correlate with prognosis in-cluded the agitated form of delirium, urinary
TABLE1. COORDINATION OFCARE FORSTAGES OFDEMENTIA
Palliative services Early stage Middle stage Late stage
Goals of care
Program support
Financial planning
Family support
PACE, Program of All-Inclusive Care for the Elderly. Discuss: diagnosis, prognosis,
course of illness, advance directives, and disease modifying therapies Talk about: patient–family
centered goals,
expectations of treatments
Advise patient and family regarding
case-management services and community services, such as Alzheimer’s Association Refer to social worker, elder
law attorney, health insurance advisor or accountant for financial planning, trusts, financial powers of attorney, and long-term care planning, including Medicaid planning.
Refer to support groups. Address concerns
Assess patient’s capacity to make decisions
Review efficacy of current dementia therapy and need for change (e.g. cholinesterase inhibitor to Memantine)
Prepare patient/family for a shift in goals and
expectations
Discuss home care options such as PACE, day-care, and home health care Reassess adequacy of
planning to meet current and future level of care. Screen for undue influence
over financial decisions
Provide resources for respite. Educate and recommend
interventions for depression, behavioral changes and wandering, e.g., life-alert and return braclets
Assess family’s understanding of prognosis and disease course.
Review appropriateness of all medications
Review goals of care, hopes, and expectations
Discuss tube feeding, admission to hospital or nursing home
Discuss comprehensive care options: e.g. hospice, palliative care at home or facility, PACE
Discuss adequacy of finances to meet desired level of care for the remaining limited time
Ensure patient’s finances are being used for patient’s care
Counsel on appropriate amount of visits from friends and family Assess for caregiver stress
and anticipatory grief Address concerns from
tract infections, pressure ulcers, and baseline nu-tritional status (body mass index). Of note, this study examined patients at the time of nursing home admission. The applicability of these re-sults to other settings is therefore unknown given that the mortality risk index has not yet been val-idated on other populations, such as community-dwelling persons with dementia.
Other studies have also examined prognosis in dementia. Schonwetter et al.,8 in a review of charts of dementia patients on hospice found that age, anorexia, and the combination of nutritional and functional impairment were associated with shorter survivals. In particular, those who expe-rience loss of ability to ambulate early in the dis-ease course, and those with acute illnesses re-sulting in need for hospitalization may have disease courses that progress more quickly.6In a study of demented patients admitted to the hos-pital with a diagnosis of hip fracture or pneu-monia, more than 50% died within 6 months post-discharge compared to 12% of patients without dementia, suggesting that these are also end-stage markers.9
Pharmacologic management
In addition to providing information about di-agnosis and prognosis, palliative care physicians may need to provide information about treatment
options. In the early stages, families and patients often seek guidance regarding potential pharma-cologic treatments for dementia. Studies of pa-tients with mild to moderate disease report mod-est benefit in about 30%–40% of the subjects in standardized cognition and function scales, and in families’ and clinicians’ impressions of global changes. However, an individual patient’s bene-fit may be difficult to recognize clinically, and a recent meta-analysis has drawn into question whether these drugs are of any benefit.10 Some data support that these medications can delay admission to a nursing home.11,12Families need to be counseled that these medications may only slow the progression of dementia, however it is unlikely that the medications will improve the patient’s cognition.13
In the late stage of dementia, very little data addresses efficacy of medications. In a subgroup analysis of 145 patients with severe Alzheimer’s dementia (Mini-Mental Status Exam [MMSE] scores of 5 to12) enrolled in a larger randomized, controlled study, the patients taking donepezil showed modest, but statistically significant im-provements in measurements of cognition and behavior.14 Another study retrospectively pool data from 3 randomized, controlled trials to ex-amine the efficacy of rivastigmine for patients with severe stage dementia (MMSE 10–12). The patients in the treatment group had a decrease in the rate of cognitive decline compared to the con-trol group after 24 weeks of treatment.15A recent small double-blinded, placebo-controlled trial of severe dementia residents of nursing homes did show some improvement of cognition and func-tion with 6 months of donepezil treatment.16 However, there are no data on the impact of these medications on quality of life in patients with ad-vanced dementia, and future study is warranted before these medications should be routinely rec-ommended to patients at this stage of disease. In addition, the potential adverse effects, including nausea and anorexia, of this class of medications can be particularly problematic in patients with dementia who commonly develop decreased oral intake as part of the natural progression of their disease. The burden of cost of the medication to the family or to the hospice should also be con-sidered in the risk/benefit analysis.
Memantine, an N-methyl-D-aspartate (NMDA) receptor antagonist, was approved by the Federal Drug Administration (FDA) in 2004 for the treat-ment of moderate to severe detreat-mentia. In one
TABLE2. MORTALITYRISKINDEXSCORE
Points Risk factor
1.9 Complete dependence with ADLs
1.9 Male gender
1.7 Cancer
1.6 Congestive heart failure
1.6 O2therapy needed within 14 day
1.5 Shortness of breath
1.5 25% of food eaten at most meals 1.5 Unstable medical condition
1.5 Bowel incontinence
1.5 Bedridden
1.4 Age 83 years
1.4 Not awake most of the day
Risk estimate of death within 6 months
Score Risk % 0 8.9 1–2 10.8 3–5 23.2 6–8 40.4 9–11 57.0 12 70.0
study, it modestly decreased the rate of cognitive decline in patients in moderate to severe (MMSE 3–14) Alzheimer’s disease.17Some clinicians be-lieve there may be benefit in combining meman-tine with an acetylcholinesterase inhibitor; how-ever, further research is required before this is made standard practice.18
Recent data suggest that high-dose vitamin E increases overall mortality.19Therefore, this treat-ment is no longer recommended.
Determining the appropriate time to discon-tinue dementia-specific medications is a compli-cated decision. Medication cessation may result in a full spectrum of family response from sig-nificant psychological distress to great relief. As noted above, the data on efficacy of these med-ications in severe end-stage dementia is limited. However, these medications may have benefits of controlling behavior apart from the cognitive benefits; stopping them may raise concerns of worsening behavior problems.10 Moreover, one study suggests that stopping acetylcholinesterase inhibitors and resuming at a future date may re-sult in a decreased responsiveness to the med-ication.13In spite of this, concerns regarding side effects, considerable cost, and perceived prolon-gation of poor quality of life, should prompt clin-icians to advise many families to support cessa-tion of therapy, particularly for patients nearing the end of their lives.
Psychiatric and behavioral problems are fre-quent in dementia. Palliative care providers tak-ing care of demented patients can play an im-portant role by giving anticipatory guidance about these problems. Depression (addressed in Block’s paper earlier in this series20) is common throughout the course of dementia but may be easier to recognize in early stages when patients are able to communicate and express some in-sight into their disease. In later stages, behavioral problems such as visual and aural hallucinations, paranoia, agitation, emotional labiality, and rest-lessness are common, occurring in up to 80% of patients.21 Patients may also exhibit physical and/or verbal aggression and sexually inappro-priate behaviors. For acute changes in behavior, the first step should be to assess for potential delirium (see section below). After ruling out delirium, the initial management should focus on nonpharmacologic modifications, especially de-creasing external stimuli and encouraging family visits or use of a sitter. Strategies to control be-haviors include ensuring the physical safety of
the home environment, distraction and redirec-tion from sources of anxiety, identifying non-stressful activities (i.e., daycare, groups), and the use of calming sensory experiences such as aro-matherapy, soothing sounds, or touch.22 There are several well-referenced reviews on this topic; however, there are few randomized, controlled trials to substantiate their efficacy.22
Antipsychotic medications are the main agents used to treat dementia-associated agitation and behavior problems. These are generally divided into two groups, typical (e.g., haloperidol) and atypical (e.g., risperidone) antipsychotics based on side effect profile. In one study, haloperidol in doses of less than 5 mg/d decreased psychosis and agitation in patients with dementia; however, approximately 20% of the patients developed sig-nificant extrapyramidal side effects.23 More re-cent studies of lower doses of haloperidol show good efficacy in preventing delirium without any extrapyramidal side effects.24 One small study showed there may be less extrapyramindal side effects with intravenous (IV) administration ver-sus oral administration.25
The atypical antipsychotics also have a role in controlling agitated behavior.26,27 Several placebo-controlled studies have shown efficacy of the atypical antipsychotic medications risperi-done and olanzapine in controlling aggressive be-haviors and psychosis in moderate to severe stage dementia with virtually no extrapyramidal side effects or tardive dyskinesia.28–39 Head-to-head comparisons of haloperidol and risperidone show no difference in efficacy or side effects in the treatment of delirium.31Sedation is a notable side effect for all antipsychotic medications, and the development of Parkinsonism may limit the use of antipsychotics.
The FDA now has a warning regarding a pos-sible increased risk of stroke in older persons tak-ing any antipsychotic. There may be an increased risk of mortality for patients taking antipsychotic medications. In a meta-analysis of 15 placebo-controlled trials comparing atypical antipsy-chotics to placebo in 5110 patients, the patients taking the atypical antipsychotics had a small but statistically significant increase in overall mortal-ity (odds ratio [OR] 1.54; 95% confidence interval [CI] 1.06–2.23; p 0.02).32However, a recent ret-rospective cohort study of a database of more than 22,000 patients found that conventional an-tipsychotics may be at least as likely as the atyp-ical antipsychotics to increase the risk of death in
older populations with dementia.33The atypical antipsychotics, in particular olanzapine, may also predispose diabetics to hyperglycemia. Although important, concern for these side effects may not be as relevant for patients close to the end of life or for those patients where the goals of decreas-ing the severity of behavioral problems and care-giver burden are primary. Given these potential adverse effects, it is important to periodically re-view a patient’s need for antipsychotics and con-sider discontinuing or decreasing the medica-tions, if possible.23,34Of note, the 1987 Omnibus Budget Reconciliation Act (OBRA) compels physicians to document the indication for the use of all such psychotropic medications, as well as intermittent attempts to wean the dose in the nursing home setting.35This documentation is in-cluded in the federally required MDS (see long-term care section below for more details) that is reported quarterly for all nursing home residents in the United States.
Benzodiazepines have also been used to con-trol agitation associated with dementia; however, formal studies to prove their efficacy for this in-dication are limited. Given their lipid solubility, benzodiazepines have an increased half-life and longer duration of action in older persons. There-fore, when prescribed, it is recommended that low doses of short-acting benzodiazepines, such as oxazepam and lorazepam, be used.22Adverse effects can include oversedation, falls, mental sta-tus changes, and paradoxical agitation. Thus, benzodiazepines should not be used unless the patient does not respond to antipsychotics, in which case they can be added for the sedation ef-fect.
Anticonvulsants may play a role in controlling agitation and aggression, as well. Studies of car-bamazapine, valproate, and gabapentin for ag-gressive demented patients reveal some bene-fit.36,37 Given the limited data, these drugs are often used as third-line agents.22Hypersexuality and paraphilias may be treated with antiandro-gens, estroantiandro-gens, gonadotropin-releasing hor-mone (GnRH) analogues, and selective serotonin reuptake inhibitors.38 Other data suggest that acetylcholinesterase inhibitors, in particular donepezil, may lessen behavioral problems in persons with dementia, although the effect may be fairly limited.39,40 Last, buspirone, an anxi-olytic with activity at serotonin receptors, may have similar efficacy to haloperidol in controlling difficult behaviors in dementia as well as in
de-creasing anxiety; however, further studies are needed.41
Pain assessment
Assessing symptoms can be challenging in pa-tients who have difficulty verbalizing their needs. However, many patients with dementia can ex-press that they are experiencing pain, and most are able to complete a pain assessment instru-ment.42 Such instruments can be helpful in the initial evaluation of pain as well as in the follow-up assessment. In one study, 65 of 66 patients with moderate dementia (mean MMSE 16) were able to respond to at least one of three scales in-cluding the Iowa Pain Thermometer, the Verbal Descriptor Scale and the Numeric Rating Scale.43 Even in the most demented patients (MMSE 11), 59% were able to complete a pain tool.44,45 Clinicians may need to use multiple assessment tools in addition to their own assessment and caregiver input to assess pain.
Many patients with dementia eventually lose their ability to speak. Clinicians must, therefore, pay close attention to non-verbal signs. There are several scales that can be used to assess the non-verbal, behavioral signs of pain.46One use-ful scale is the Checklist of Non-verbal Pain Be-haviors that includes six pain-related beBe-haviors: vocalizations, grimacing, bracing, verbal com-plaints, restlessness, and rubbing.47 This scale was tested on 88 cognitively impaired and cog-nitively intact older adults who were hospital-ized with hip fractures. No differences in the pain-related behaviors between the cognitively impaired and intact patients were identified, and the pain-related behaviors correlated with verbal reports of pain. The interrater reliability was 93%. Another example of a pain scale is the Hurley Hospice Approach Discomfort Scale that describes nine behaviors such as tense body lan-guage and frightened expressions. This scale was originally tested longitudinally in 82 nurs-ing home residents with advanced Alzheimer’s disease.48The traditional signs of facial grimac-ing are accurate for the presence of pain but not its intensity.49
Physician assessment of pain has been found to be accurate in mildly to moderately demented patients but less so in severely demented peo-ple.50Caregiver assessment of pain in one study had a 67% correlation with self-reported pain in patients with cognitive impairment (mean MMSE
15.7).44This study also suggested that caregivers tended to underestimate the severity of pain.
Documented changes in behavior, whether more disruptive or withdrawn, should prompt a thorough pain assessment as part of the routine assessment for an acute medical illness or unmet needs (e.g., need for toileting or feeding). In these cases, analgesics should be used on a trial basis when history and/or physical findings suggest an etiology of pain. The American Geriatric Soci-ety (AGS) Guidelines for the management of chronic pain in older persons endorses this strat-egy.51Depending on the likely source of pain, a trial of opioids or nonsteroidal anti-inflammatory drugs (NSAIDs) may be beneficial. In one small trial, researchers were able to show a decrease in the amount of antipsychotics administered to dis-ruptive nursing home residents simply through the use of routine empiric treatment with acet-aminophen.52 Such use of analgesics should be frequently reassessed to ensure that medications are not being used for sedative side effects in the absence of pain.53,54
Pain management
The following section focuses on concerns spe-cific to geriatric patients, because general princi-ples of pain management will be discussed in other papers in this series. The AGS guideline is a good resource for additional reading. Given the physiologic changes with aging including de-creased creatinine clearance, inde-creased perme-ability of the blood–brain barrier, and increased body fat, pharmacokinetics alterations of anal-gesics are predictable. Older patients are at a higher risk for adverse events compared to younger patients; however, analgesics, including opioids, are safe and effective in geriatric popu-lations.51 The AGS guidelines caution to “start low, and go slow” to allow for safe titration to treat pain effectively and avoid adverse effects. NSAIDs should be used with caution if pscribed on a chronic basis. The risk of NSAID re-lated gastrointestinal bleeding increases with age from 1% in the general population to 4% in those over the age of 60.55,56 Older persons are also known to be at greater risk for NSAID-related re-nal toxicity.57 A safer alternative for patients without known hepatic dysfunction is acetamin-ophen. In at least one study of persons with pain associated with arthritis, acetaminophen has equal efficacy to ibuprofen.58Coanalgesics such
as antidepressants and anticonvulsants play a key role in the treatment of complicated pain syn-dromes. The addition of a coanalgesic may allow the dose, and therefore the risk of adverse effects, of opioid medications to be decreased. Tricyclic antidepressants have the best data to support their use as coanalgesics.59However, these med-ications have anticholinergic properties that cause considerable side effect including delirium and urinary retention in older adults. Noradren-ergic reuptake inhibitors, and noradrenNoradren-ergic and specific serotoninergic antidepressants have a safer side effect profile with growing evidence of their effectiveness.60,61
Decision making
The palliative medicine physician can play a key role for patients with dementia and their fam-ilies by addressing advance care planning and discussing goals of care early in the disease course. For example, a randomized controlled trial of palliative care consultations for patients with advanced dementia in the hospital showed that the intervention group was significantly more likely to have a palliative care plan on dis-charge (23% versus 4%) and more decisions to forego medical interventions (such as IV fluids).62 In another study, proactive involvement of an in-patient palliative care service decreased intensive care unit length of stay for dementia patients, re-duced nonbeneficial interventions, and increased identification of poor prognosis and do-not-re-suscitate goals.63Because the patient’s cognitive status will eventually decline, assisting with timely discussion of advance directives and fa-cilitating completion of appropriate paperwork as early as possible is of prime importance. This effort can soften a crisis or avoid an urgent deci-sion in the future and potentially lessen the bur-den for all involved. It is also consistent with the overall goal of honoring the patient and his or her wishes.
Because a major goal of palliative medicine is patient-centered care, determining the patient’s ability to make decisions is fundamental to re-specting their true wishes. Certainly, at some point in the progression of the dementia, a per-son will no longer be able to make decisions. However, physicians should recognize that a de-mented person may still be able to make some decisions. Demented patients often still want to participate in their care. In one study, 92% of
pa-tients with mild to moderate dementia indicated they wanted to be involved in their treatment de-cisions, and the majority of their caregivers sup-ported this.64Determining capacity is essential to determining who should make a treatment deci-sion for the patient and affects the relationship of the physician to family members.65
Decision-making capacity in patients with de-mentia is not all or nothing. People with demen-tia may still participate in their decision making even if they need assistance in that process. Us-ing three assessment instruments, one study showed that the majority of mildly to moderately demented patients had acceptable decision mak-ing capacity based on the domains of under-standing, appreciation, reasoning, and choice.66 Although mean performance for subjects was lower than controls on all the instruments, most subjects were still in the normal range for each domain. Because capacity is specific to the level of decision making, a patient may still retain the ability to make decisions at a simpler level (e.g., refusing a urinary catheter) even when they are not able to decide more complex matter (such as neurosurgery).
The distinction between competency and deci-sion-making capacity is important. Whereas com-petency is a legal term in which an individual re-tains their legal rights, decision-making capacity is defined as the clinical determination of a per-son’s ability to demonstrate an understanding of the central issue, the options, and appreciate the consequences and reasons, and voice a decision about a specific situation at a specific point in time. Thus, a person may be competent (in that a judge has not appointed a conservator or guardian) but not have reasonable decision-mak-ing capacity as determined by a licensed physi-cian, psychiatrist, or psychologist.67 In clinical medicine, these definitions are vital, especially in the elderly who are more affected by cognitive impairment. Impairment of capacity may be tem-porary, for example, as a result of delirium or de-pression. In these situations, the stability of the decisions and their consistency with prior ex-pressed wishes and overall philosophy about healthcare become key. Loss of competency is relatively permanent, until a court gives the individual their rights back. Being sensitive to the importance of decision-making capacity may involve frequent serial evaluations and signifi-cant investment of time. The clinician role can also include educating caregivers to assess a
person’s capacity. Taking the time to do this and doing it well is truly a way to honor the patient and family.
Tube feeding
As dementia progresses, patients eventually lose the ability to handle oral feeding and become high risk for aspiration. They also exhibit de-creases in appetite and oral intake. In both situa-tions, tube feeding is likely to arise as a consid-eration for patients and families adjusting to these changes. Thus, palliative medicine providers need to be prepared to give guidance about the medical appropriateness of tube feeding.
Tube feeding is not beneficial in patients with advanced dementia. Though there is no evidence from a randomized controlled trial, there is ex-pert consensus based upon existing data. This consensus is expressed in the AGS position state-ment, “The use of tube feeding, in patients with advance dementia, is unlikely to provide medical benefit or improved comfort.”68Further, it asserts that “in general, the benefits versus the burdens of TF [tube feeding] do not support its use in these patients with advanced dementia.” Tube feeding does not change the survival of dementia patients who are unable to eat orally.69,70Moreover, in pa-tients with severe dementia, feeding tubes do not reduce aspiration, pressure ulcers, or improve markers of malnutrition; rather they lead to in-creased infections, more discomfort, inin-creased oral secretions and use of physical restraints.71,72 There are no data that proves tube feeding im-proves measures of quality of life in dementia. Lastly, the prognosis of those patients who have a tube placed is poor, and in all but one study,73 no mortality benefit has been proven for tube feeding in chronically ill older patients.74–79 Pro-cedures to place and maintain nasogastric or gastrostomy feeding tubes may cause additional burden.
DELIRIUM
Delirium is a common geriatric syndrome that affects sick or frail older patients at high rates. It is defined as an abrupt change in cognitive abil-ity because of impairments in attention and is characterized by fluctuations in sensorium.80 Ap-proximately 30% of all hospitalized older adults,81 and 50% of older patients undergoing
surgery may develop delirium.82 Greater than 70% of all patients admitted to the medical in-tensive care unit experience delirium.83,84 Al-though it is relatively infrequently found in older persons living in the community, greater than 50% of nursing home residents develop delir-ium.85More than 80% of dying palliative care pa-tients become delirious as part of the syndrome of imminent death.86
Not only is delirium a potentially terrifying ex-perience for patients and their families, but im-portant enduring consequences are associated with episodes of delirium. First, delirium is a marker for serious, acute illness (see discussion of assessment below). Many patients experience a prolonged course of cognitive impairment of up to 12 months after an episode of acute delirium.87 Delirium is not only a significant risk factor for functional decline and institutionalization,88,89 but it is also an independent risk factor for 12-month mortality after hospitalization.90,91 Apa-thetic delirium can be just as terrifying to patients and families as agitated delirium; and it is just as responsive to antipsychotic medications.92Given the gravity of these potential outcomes, all clini-cians who care for older adults need to have a working knowledge of the assessment and treat-ment, as well as the prevention of delirium.
Assessment of delirium
The diagnosis of delirium is made clinically, at the bedside. One particularly useful and vali-dated detection tool is the Confusion Assessment Method (CAM).93To meet the criteria for delir-ium using the CAM instrument, a patient must have an acute onset of a change in mental status, fluctuating course, and inability to hold attention. In addition, the patient must display one of two criteria: disorganized thinking or altered level of consciousness. In validation studies, this instru-ment was found to have a sensitivity and speci-ficity of greater than 90% in populations of sur-gical and medical hospitalized patients. In addition, patients may exhibit global cognitive defects, perceptual disturbances (i.e., hallucina-tions), reversed sleep–wake cycle, and psy-chomotor disturbances.94Geriatric patients may develop a hypoactive form of delirium evidenced by lethargy and a generally withdrawn state more frequently than the hyperactive form of delirium which characteristically features agita-tion and hypervigiliance.95
The differential for the precipitating factors of delirium is broad. Often, the cause is multifacto-rial. Any evaluation should be undertaken with the goals of care of the individual patient in mind. Evaluation for easily reversible etiologies of delir-ium may be indicated. Clinicians may choose to forgo any workup and treat the symptoms em-pirically. Alternatively, other patients who are not imminently dying may appropriately un-dergo a comprehensive evaluation to uncover the cause of the delirium.
Common causes of delirium in older patients include drug effects (notably anticholinergic drugs, H2-blockers and hypnotics), alcohol or drug withdrawal, central nervous system disease, infection (especially urinary tract infections), postoperative state, ischemia, hypoxia, anemia, dehydration, and metabolic disorders including renal and liver failure and endocrine disorders. Other important precipitating factors to consider in geriatric patients include: the use of bladder catheters and physical restraints, fecal impaction, and untreated pain.96–98
Treatment
Delirium should be treated by addressing the underlying cause (i.e., a urinary tract infection or untreated pain), while utilizing nonpharmaco-logic approaches as well as medications only when necessary to control the suffering that may accompany delirium. Delirious patients benefit from a calm environment. Multidisciplinary teams can provide this by frequent reorientation with vocal reminders, clocks and calendars, re-duction of confusing noises such as beeping mon-itors, eliminating the use of restraints, adequate room lighting that is appropriate for the actual time of day, encouraging friend and family vis-its, and placing familiar objects from home in the patient’s room. Other interventions include early mobility therapy, the use of nonpharmacologic sleep aids, ensuring patient has use of assistive devices including hearing aids and glasses, and the evaluation and treatment of those at risk for dehydration. A multicomponent intervention of nonpharmacologic measures was proven to be ef-fective in preventing delirium and limiting the duration of a delirious episode in a randomized trial of 852 adults 70 years of age or older.99
Pharmacologic therapy should be reserved for those patients who appear to be suffering signif-icantly from agitation and hallucinations, or if
there is a threat to their own, or another person’s safety. First-line therapy is haloperidol starting at a low dose (e.g., 0.5–1.0 mg) in a frail older adult. Haloperidol has a faster onset of action and can be administered intramuscularly (IM), subcuta-neously, intravenously, as well as orally. The atypical antipsychotics are considered second line. While less likely to cause extrapyramidal side effects as noted above, the atypical antipsy-chotics are less sedating, have a slower onset of action, and must be given orally with the excep-tion of olanzapine and ziprasidone that can be given IM. An understanding of the overall prog-nosis (days versus hours) should guide the extent of the evaluation, and a knowledge of the easily reversible causes of delirium will help clinicians tailor their approach to individual patients. Ex-pertise in providing a calming environment for delirious patients is an important skill in caring for all patients.
URINARY INCONTINENCE
Urinary incontinence (UI), the involuntary loss of urine, is a troubling and common concern for older persons; however, it is not considered part of normal aging.100,101Despite not being normal, it is a common reality for patients of all ages in the palliative care setting due to various thera-peutic interventions, disease progression, and functional decline. UI can be a troublesome symptom that impacts quality of life with signif-icant psychological consequences including so-cial withdrawal, body image distortion, and de-pression.102–104UI has been noted to substantially increase caregiver burden, and it is an indepen-dent predictor of nursing home placement.105–107 Unfortunately, data describing the evaluation and treatment of incontinence in palliative care settings are limited. The following discussion will highlight the two types of UI (urge and func-tional) with relevance to the palliative care
set-ting with a brief mention of the other types of UI (stress and overflow).
Patients should be routinely assessed for UI in the palliative care setting. Acute onset of UI may be secondary to an easily reversible cause, and al-though less likely, chronic UI may have a re-versible component (Table 3). Thus, a thorough medical and environmental evaluation of the pa-tient is always warranted. If no clearly reversible cause is found, a decision regarding whether or not to further address UI can be made based on the goals of care and the invasiveness of the pro-posed evaluation and treatment. In many cases, no intervention will be desired. However, in some cases, even small interventions aimed at the specific type of incontinence may go far in im-proving an individual’s quality of life.
Functional incontinence
Functional UI is the loss of urine due to the in-ability of a patient to reach the toilet and/or co-ordinate the movements necessary to use the toi-let. Given the frequency of functional decline in palliative care patients, and loss of mobility in particular, functional UI is likely the most com-mon form of UI in this setting and should be high in the differential diagnosis. This form of UI is amenable to intervention. For example, a study of patients with cancer who received acute reha-bilitation showed an improvement in ambulation from 14% to 80% and in urinary continence from 38% to 87%.108 Functional UI can often be ame-liorated by simply providing appropriate assis-tive devices for impaired mobility or rearranging furniture. The provision of a bedside commode or assistance with transfers may be all that is needed. Eliminating the use of restraints (chemi-cal and physi(chemi-cal), treating depression, and sched-uling voids may also be effective strategies. Lastly, patients can be advised to decrease the amount of fluid that they consume in the evening, and diuretics can be stopped or administered early in the day in order to prevent nocturnal
in-TABLE3. COMMON REVERSIBLECAUSES OFURINARYINCONTINENCEFOUND INPALLIATIVECAREPATIENTS
Hypercalcemia Drugs (mechanism):
Vaginitis Diuretics (increased urinary output)
Urethritis Sedatives (impaired mobility and cognition)
Volume overload Anticholinergics (decreased bladder contractility)
Stool impaction -adrenergics (altered sphincter tone)
continence. Family members and caregivers should be advised that all patients with life-lim-iting disease, particularly those with dementia, will eventually develop functional UI as they de-cline. Of note, these patients are also at risk for fecal incontinence, and a similar management ap-proach is recommended.
Other forms of incontinence
In addition to functional UI, geriatric palliative care patients may also experience urge, stress and overflow UI. Urge UI is caused by irritability of the detrusor muscle, or uninhibited bladder con-tractions.109This may be associated with local ir-ritation (e.g., atrophic vaginitis, tumor, or infec-tion) or neurologic disorders such as dementia, stroke, and Parkinson’s disease. Patients with urge UI will report having an uncontrollable sen-sation or urge to urinate accompanied by the leakage of large volumes of urine. Classically, pa-tients say they cannot get to the toilet quickly enough. Treatment of urge UI in patients with good functional status focuses first on behavioral therapies including Kegel (pelvic floor muscle) exercises, bladder retraining, and prompted void-ing.110,111 However, these behavioral therapies may be overly burdensome for some palliative care patients. When these therapies are unsuc-cessful or unrealistic, medications with anticho-linergic (e.g., oxybutinin and tricyclic antidepres-sants) and smooth muscle relaxation (e.g., calcium channel blockers) effects can be uti-lized.112 However, anticholinergic medications may cause side effects such as delirium, dry mouth, and constipation that may be particularly problematic for palliative care patients. Thus, medication effects should be appropriately bal-anced to support the goals of care. Selection of protective undergarments may also provide a sig-nificant sense of control and security.
Stress UI is caused by a weakening of the pelvic floor muscles. Patients complain of leaking small amounts of urine in the setting of increased in-tra-abdominal pressure such as coughing or laughing. Although stress UI is less likely to be a major symptom in the palliative care setting, treatment, if concordant with goals of care, may still improve quality of life. First-line treatment involves Kegel (pelvic floor muscle) exercises fol-lowed by consideration of the administration of systemic estrogens or an -agonist (phenyl-propanolamine).113,114
Overflow UI occurs when urine escapes from a full, distended bladder due to mechanical ob-struction (e.g., prostate enlargement or stricture), atonia secondary to neurological causes (e.g., spi-nal cord injury or autonomic neuropathies) or medications. Patients will often report small amounts of continuous or frequent urine leakage or may be unaware of the episodes. In addition, patients may experience exceptional pain from the accompanying bladder distension. This can be a stimulus for behavioral change and delirium and should always be considered in the cate-gory of reversible causes of agitation.115Urinary retention may be associated with opioid use. Although this occurs more frequently with intrathecal and epidural administration of opi-oids,116,117 there is some data that describes urinary retention associated with the use of IV opioids.118–120The majority of the data describes populations of postoperative patients, and it is unclear how frequently acute urinary retention occurs with the use of opioids in palliative care settings.
Treatment focuses on relief of the obstruction. Although options include medications that de-crease the bladder sphincter tone (e.g., -block-ers), surgery, and intraurethral stent placement, most palliative care patients will be treated with bladder catheterization alone to avoid more bur-densome interventions. Intermittent catheteriza-tion may be a reasonable choice to avoid the risks of discomfort from urinary retention and infec-tion from an indwelling urinary catheter for those not at the end of their lives. On the other hand, patients with dementia may have a hard time un-derstanding why they must endure the burden of such a frequent, uncomfortable procedure. For many terminally ill patients and patients who have wounds around their perineum, an in-dwelling catheter may be the best option to pro-tect skin from repeated moisture exposure and for ease of care.121When patients have significant pain with movement for dressing or linen changes, an indwelling catheter may serve to de-crease pain.
Some clinicians may believe that all dying pa-tients should have an indwelling urinary cathe-ter for ease of family and nursing care, but in-dwelling catheters may not be indicated for or desired by all patients. Indwelling catheters may actually be quite physically uncomfortable for pa-tients, at times contributing to agitation and delir-ium. Moreover, routine catheter care may be
dif-ficult for certain caregivers and settings. For pa-tients with or without an indwelling catheter, at-tentive, high quality nursing care is essential to achieve comfort and skin care goals. Condom catheters are another option to limit skin expo-sure to moisture and decrease linen changes but may also be uncomfortable, be associated with skin necrosis, and carry a similar risk of urinary tract infection.122 Incontinent patients without a catheter will require the use of absorbent under-garments and/or pads to control skin moisture exposure.
One study specific to the palliative care setting gives insight into the prevalence of urinary prob-lems, indications for catheter use, and morbidity associated with catheter use. Fainsinger et al. studied 61 consecutive patients admitted to a pal-liative care unit.123 Patients were assessed daily for urinary symptoms and the need for a cathe-ter. The authors found that for the 23 patients who were admitted with catheters and the 22 who received catheters on the unit (38 patients were admitted without a catheter); patient comfort was the top indication. Urine retention and skin care concerns were the other main indications for those receiving a catheter on the unit. Encrusta-tion, bladder spasm, fever, and urethritis were the associated morbidities. Given similar durations of admission, the authors suggest that catheter use resulted in no significant increase in mortal-ity. Moreover, the authors propose that a longer and slower course of decline may lead to an in-creased need for catheter use. Ideally, after con-sidering the risks and benefits involved, the de-cision for or against a catheter should be an individualized decision that maintains an ele-ment of control for the patient.
FALLS
Falls may have a significant impact on the qual-ity of life of geriatric palliative care patients de-pending on their stage of illness and are gener-ally a marker of overall decline in the geriatric population. Not only do they cause injury and pain, they also cause significant fear, anxiety, and decreased function, which can lead to decreased socialization. For these reasons, patients in early or middle stages of their disease may be more greatly impacted by a fall. In late stage illness, falls are less likely to be a major concern. The ex-tent of evaluation and treatment will vary
de-pending on the individual patient and goals of care. Whether a patient will benefit from all or part of a comprehensive falls assessment needs to be determined on an individual basis. Like-wise, the treatment approach, whether intense gait and balance training or obtaining new eye glasses, should also be negotiated for each patient based on benefits versus burdens. In some cases, identification of reversible causes can be very re-warding to patient, family, and palliative care team and can contribute to the central goal of maintaining quality of life.
Falls are common in geriatric populations af-fecting approximately 30–40% of community dwelling persons aged 65 and older.124Although very limited information has been published about falls in palliative care settings, several well referenced published guidelines that were devel-oped for healthier geriatric populations may pro-vide some guidance for the evaluation and pre-vention of falls in seriously ill and dying patients.125,125Falls are likely common in pallia-tive care patients because these patients fre-quently possess many identified risk factors for repeated falls including polypharmacy (4 or more medications prescribed), advanced age, orthosta-tic hypotension, cognitive impairment, arthritis, balance and gait disturbance, and muscle weak-ness.127One study examined 227 patients admit-ted to an inpatient, oncology palliative care unit. Of these, 34 patients fell during their stay. Pa-tients who fell were older, more physically de-pendent, less alert and more confused, had weaker prefall arm strength, and reported more fatigue.128Another study in a Canadian palliative care unit identified risk factors for repeated falls including advanced age, long length of stay, and a history of previous falls.129
For most geriatric patients, a complete assess-ment of falls is recommended after a patient has two or more falls or persistent gait and balance difficulties. If a patient has a good functional sta-tus and wishes to prevent future falls a focused history and physical examination may reveal op-portunities for simple targeted interventions. A focused history can uncover the circumstances and frequency of falls, and undiagnosed episodes of loss of consciousness. The physical examina-tion should focus on abnormalities that can be ameliorated to aid in fall prevention. The exami-nation includes measurements of orthostatic blood pressure and a musculoskeletal examina-tion to document arthritic changes and joint and
motion limitations. The head and neck examina-tion should include tests to uncover visual, bal-ance, and hearing impairment that may be easily corrected with appropriate assistive devices. A focused neurologic examination may reveal re-flex, mental status, gait, and proprioception ab-normalities leading to the need for an assistive device, or further work-up with imaging and lab-oratory studies. One well studied test for func-tional gait disturbance is the “Get Up and Go Test.”130To administer this test, the clinician asks the patient to rise from a chair, walk 3 meters, turn around, and return to a seated position while the clinician keeps time. A score of greater than 30 seconds indicates that the patient has impaired mobility and is at risk for falls.
A complete falls assessment should address specific risk factors. The patient’s living environ-ment should be examined for known hazards that contribute to falls including throw rugs, poor lighting, unstable furniture and railings, and clut-ter. The bathroom is a particularly dangerous place for falls, and therefore, should be examined carefully for the need of a nonslip bath mat, shower seat, and rails. Studies outside the pallia-tive care setting have shown that the modifica-tion of environmental hazards may significantly decrease the risk of falls. For example, one study enrolled 310 community dwellers aged 70 years or older with at least one fall in the preceding 12 months. A multidisciplinary team educated the patient about lower limb strength and balance and ways to improve their home and community environment to prevent falls. The intervention group experienced a 31% decrease in falls.131
Deconditioning is another risk factor to con-sider. A referral to physical therapy may benefit many patients, even those at the end of their lives. Physical therapists may be able to focus on gen-eral conditioning and specific interventions to ad-dress gait and balance disturbances, as well as help some patients meet more functional goals. For example, one study on the use of physical therapy in a hospice facility showed a 27% over-all improvement in mobility with 49 of the 301 patients improving their function such that they were able to go home.132The Medicare Hospice Benefit includes physical therapy and occupa-tional therapy treatment when consistent with the patient’s care plan.
As patients progress in their illness, some may become agitated. In an attempt to protect them from hurting themselves, some caregivers may
use restraints. However, restraints are a known risk factor not only for falls, but for falls causing serious injury in the nursing home as well as in the hospital.133–136 In addition, restraints are known to be a risk factor for urinary incontinence, delirium, and psychological distress.136,137 There-fore, the use of restraints in the palliative care population should be avoided, and alternatives strategies such as the employment of sitters, de-creased environmental stimulation, low bed heights, and bed alarms should be considered.
Polypharmacy is another well-documented risk factor for recurrent falls.138,139 Specific cate-gories of medications have been shown to be as-sociated with the highest risk of recurrent falls in-cluding: tricyclic antidepressants, neuroleptic agents, benzodiazepines, anticonvulsants, sero-tonin-uptake inhibitors, and class 1A antiar-rhythmics.140,141 Thus, the patient’s medication list should be reviewed, and all unnecessary med-ications tapered or stopped.
LONG-TERM CARE
As diseases progress and patients become more functionally impaired, many patients can no longer live independently. Patients may find themselves needing several different levels of care during the last years of their lives. Palliative care clinicians need to be aware of the commu-nity resources and sites of long-term care that are available to help guide families, caregivers, and elderly patients in making informed decisions about meeting their care needs. This section de-scribes long-term care options including: home care, adult daycare, assisted living, and nursing home care, including skilled nursing care. The Edmonton Regional Palliative Care Program and the Program of All-Inclusive Care for the Elderly (PACE) will also be highlighted as examples where palliative care is being provided along a continuum of care.
Home health care
Many chronically ill patients wish to remain in their own homes as long as possible. Home health care is an option that can support this goal by providing health and social services for older adults in their own homes to improve and main-tain their function, and to prevent institutional-ization. Home health care is usually paid for by
Medicare and is provided by various nonprofit or for profit home health care agencies in a given area. It is a time-limited intervention based on physician orders for a patient’s needs for skilled professional care. Services may include skilled and psychiatric nursing, physical and occupa-tional therapy, home health aide assistance, and social work support without direct physician oversight. Durable medical equipment can also be provided, including a hospital bed and wheel-chair.
Home health care is different from home hos-pice in the United States in a number of ways. Foremost, as home health care currently exists in the United States, the goals of care are rarely fo-cused on palliation as in hospice but rather on re-habilitation. Second, home health care does not provide 24 hour access to nursing services or to inpatient hospice admission to avoid a hospital or emergency room encounter. Moreover, unlike hospice, home health care does not typically have an interdisciplinary team approach with a focus on family support and bereavement services. In summary, the home health care model is not usu-ally focused on care of the dying patient.
Palliative home care programs have been de-scribed in different countries with considerable variability in the type and quality of services that each program delivers. Several benefits to pallia-tive home care have been described including: in-creased satisfaction of family/caregivers with the care provided,142,143 decreased time spent in the hospital at the end of life,144–146 and improved general practitioner knowledge of symptom management.147 One study has shown that in-corporating a palliative care program into an ex-isting home care program results in improved satisfaction with care, fewer emergency room vis-its, and decreased costs.148 More research is needed to define the most effective strategies for providing palliative care in patients’ homes.149
One model of care that integrated home pal-liative care into a comprehensive care program specific to oncology patients’ needs is the Ed-monton Regional Palliative Care Program in Al-berta, Canada. This program was created with the goal of increasing access to palliative care ser-vices, decreasing the number of cancer-related deaths that occur in acute care facilities, and in-creasing the participation of family care physi-cians in the end-of-life care of their patients. Four interdisciplinary teams provided consultative services for patients enrolled in a palliative care
system that integrated several sites of care in-cluding hospital-based services, inpatient pallia-tive care units and hospices, continuing care facilities, as well as a regional home care pro-gram.150During the study period of 5 years from 1992–1997, there was a decrease in the number of patients who died in the acute care facility and a significant decrease in the average length of stay in the acute care facility as well as the cancer cen-ter. These outcomes would not only appear to meet patient and family care goals better, but would also seem to result in significant cost sav-ings. Further research is needed to define specific benefits of this type of program.
Adult daycare
Adult daycare programs are generally de-signed to provide daytime care for patients with minimal personal care needs, whose caregivers are able to provide care at night. Variations on this theme are common. Adult day care offers a range of supportive and social services in the United States, the United Kingdom, Canada, Italy, and other countries. Most centers provide recreation, socialization, meals, some social ser-vices, personal care and transportation; however, the medical care provided varies from site to site.151 Some centers offer specialized services such as dementia programs and incontinence programs.152Although some may offer pain man-agement, they rarely offer comprehensive end-of-life care.153
One notable adult day care program found in the United States is the PACE program.154 This is, in fact, a comprehensive care program that em-phasizes the daycare component. PACE is com-munity based, and funded by Medicare and Med-icaid dollars. Currently there are at least 44 PACE programs in 18 different states in the United States. PACE programs enroll older persons who would otherwise be eligible for nursing home placement, and provide comprehensive medical, rehabilitation, social, and personal services de-livered by a multidisciplinary team. In the evening, patients return home to be cared for by families and caregivers. Care is provided in a day care environment and in the participant’s home, tailored to the participant’s needs and social re-sources. PACE programs commit to caring for tients until the end of their lives, given these pa-tients are no longer eligible for the Medicare Hospice Benefit while enrolled in PACE.155,156
No national standards for the provision of pal-liative care by PACE are published, and research suggests wide variation among programs.157 However, PACE may help clinicians, patients and families address important palliative care goals. Specifically, patients enrolled in PACE are more likely to die at home (rather than a facility), avoid the use of invasive medical technology in the last months of life, and have more documented ad-vance planning conversations compared to other Medicare recipients.158,159 In addition, because the same interdisciplinary team follows patients from primary care to hospitalization to long-term care, the errors and distress that accompany tran-sitions of care may be minimized under PACE.160 In order to improve the quality of palliative care provided, many programs have developed edu-cational programs; however, research is needed to determine the specific needs of this group, and how best to meet those needs.161,162
Residential care and assisted living
Individuals who are unable to stay at home alone but who do not need the intensive 24-hour supervision of a nursing home may choose to reside in an assisted living facility. Assisted liv-ing facilities are paid for out of pocket by the patient or family. The National Center for As-sisted Living defines asAs-sisted living as “a con-gregate residential setting that provides or co-ordinates personal services, 24-hour supervision and assistance (scheduled and unscheduled), activities and health-related services.”163,164 Typically, these facilities provide a combination of housing, socialization, personalized support services, and health services. Personal care homes, board and care homes, residential care homes, and domiciliary care are all examples of assisted living settings. In the United States, as well as other countries, assisted living facilities are quite heterogeneous, reflecting divergent regulations and variable institutional practices and levels of care offered.165–167 Given the tremendous variability in levels of supervision needed, rates of decline, and specific areas of cognitive deficit over time in the elderly, the heterogeneity of regulations and practices can be problematic and is a reason for caution. Gain-ing familiarity with individual institutions is very important in finding a good match be-tween facility and elder as is continued health care provider involvement.
Staffing and payment sources also vary con-siderably among facilities. Although not required by law to do so, some assisted living facilities pro-vide onsite physician visits and 24-hour nursing care. However, a national study of assisted living facilities in the United States reported that only 30%–40% were staffed with a full-time registered nurse (40 hours per week).168In addition, only 15 of 50 states have minimum staffing laws, 22 of 50 states allow unlicensed staff members to distrib-ute medications, and only 11 of 50 states require training for the nurse’s aides.169
Assisted living residents are considered to be living at home and may receive palliative care, usually in the form of home hospice. However, in some states, regulations prohibit hospice care in assisted living facilities. Similar to a nursing home setting, hospice care would be in addition to the resident’s institutional level of supervision and nursing and medical care. Obviously, this in-terplay of responsibility belonging to multiple parties, including family, may work well or poorly. From a practical perspective, palliative care delivery in assisted living facilities may be hindered by a variety of factors including lack of 24-hour nursing coverage, lack of interdiscipli-nary team care on site, difficulty dispensing opi-oids because of inadequate secure storage options and lack of necessary nursing personnel, resis-tance to carrying out verbal orders, limited physi-cian visits, and minimal staff education about end-of-life issues.
Some assisted living facilities are piloting pro-grams to improve care at the end of life in an at-tempt to provide adequate care for dying indi-viduals.171 One study compared the dying experience in assisted living facilities to that in nursing homes. In the last month of life, the as-sisted living residents were more likely to report untreated pain (14.8% versus 1.8%, p 0.013) and inadequately treated shortness of breath (12.5% versus 0%, p 0.004) compared to nursing home residents. However, despite these inadequacies in symptom management, family and staff mem-bers reported more satisfaction with the majority of deaths in the assisted living facilities compared to deaths in the nursing home.171 Although this study reported considerable satisfaction with care by both the families and the staff, there were unmet palliative care needs. More research is needed to understand potential care interven-tions for assisted living residents. With the aging of the population, it is likely that the number of
persons receiving care in assisted living facilities will grow substantially.
Nursing home care
Increasingly, nursing homes have become the site of death for frail, older persons. Currently, 20% of persons older than age 65 die in nursing homes, and 30% of hospital deaths occur within 5 days of transfer from a nursing home. It is pro-jected that approximately 40% of Americans will die in a nursing home by the year 2020.173Given this increasing need, palliative care clinicians will likely be vital in directing patient care and edu-cating nursing home staff in the delivery of ap-propriate end-of-life care.
When an individual reaches a level of depen-dence requiring 24-hour supervision with a sig-nificant need for assistance with activities of daily living (ADLs), nursing home care often becomes a consideration. Urinary and fecal incontinence, falls, and increased physical care burden are com-mon factors that contribute to a decision for nurs-ing home care. Custodial care (care that can be provided by nonlicensed, nonprofessionals) in nursing homes are paid for out of pocket or by Medicaid if one’s assets are depleted to a certain level determined by each state. Skilled nursing fa-cility (SNF) care, defined under the Medicare Skilled Nursing Benefit as professional care that is given by a licensed individual, e.g., IV thera-pies, tube feedings, wound care, or rehabilitation is also provided as a transition phase for patients coming from hospitals needing a higher level of care. Although nursing homes are much more tightly regulated than assisted living facilities, variation in institutions is still prevalent.
The level and types of palliative care services provided vary among nursing homes. For exam-ple, some nursing homes have separate palliative care units or beds and/or specialized dementia care units. Some may be able to administer IV med-ications and complete frequent pain assessments, while others may not. Nursing home residents at one institution may have immediate access to clin-icians such as physclin-icians, social workers, and chap-lains while others may have infrequently available contacts. Staffing of nurses is also variable. A large portion of direct patient care is provided by nurs-ing assistants who usually have no formal trainnurs-ing in geriatrics or palliative care.173
In recent years, the quality of end-of-life care for the elderly residing in nursing homes has
re-ceived a lot of attention in the medical literature. A study of patients in their last 48 hours of life in five nursing homes showed that dyspnea rather than pain was the most prevalent symptom be-cause most patients (76%) died of noncancer di-agnoses.174 Of these dyspnea patients, 23% re-ceived no treatment for their dyspnea, and only 27% of the treated cases received an opioid. Less than one third of patients received treatment for their oropharyngeal secretions. Delirium was not treated in 38% of cases, and none received an an-tipsychotic.
Palliative care in nursing homes is frequently suboptimal. Recent research has highlighted im-portant concerns with the quality of care in nurs-ing homes from untreated pain,175family dissat-isfaction around the quality of care, and care that is not consistent with the disease trajectory or pa-tient preferences.176–178 Research indicates that 33%–84% of residents have ongoing pain that im-pairs ambulation, reduces quality of life and in-creases the incidence of depression.179 In one study, 29% of nursing home residents with can-cer reported daily pain, and only 26% of those with daily pain were treated with daily anal-gesics.180In another study, 69% of nursing home residents who were able to communicate re-ported pain; however, in 34% of these cases the attending physician failed to recognize and treat the resident’s pain.181In a large study of 15,745 nursing homes, the staff reported that 3.4% of the residents experienced daily excruciating pain in the previous week.182Many dying nursing home residents with daily pain are either not receiving adequate pain management treatments or are get-ting treatments that are inconsistent with pain management guidelines.183 Experts identify fre-quent staff turnover, lack of palliative care train-ing among staff, and a tension between goals of restorative care versus palliative care as barriers to the provision of excellent palliative care in the nursing home setting.173
The quality of care is also dependent on staff turnover. Higher staff-to-patient ratios are asso-ciated with higher quality of care, and longer re-lationships with staff over time result in greater satisfaction with care. However, many facilities experience frequent staff turnover. High turnover of nurse aides has been associated with inade-quate staffing and stressful working conditions and increased pressure ulcers.184,185 Organiza-tion-wide efforts to improve quality of end-of-life care are difficult to sustain without a stable staff.
