Palliative care considerations in frail older adults
Introduction
Frailty is a common geriatric syndrome that affects a growing number of people worldwide due to the aging of the population. Patients with frailty experience a high symptom burden and are at an increased risk of morbidity and mortality. Palliative care is gaining attention as an essential element of patient-centered care for frailty. Therefore, it is crucial for clinicians providing care to older patients in the ambulatory care setting to become familiar with the basic concepts of frailty and the role of palliative care in this population.
The purpose of this paper is to provide an overview of the current understanding of frailty and its associated outcomes, discuss the important aspects of a comprehensive patient assessment, and highlight the significance of palliative care in managing patients with frailty in an outpatient setting. Additionally, this paper will explore innovative models of palliative care for elderly patients with frailty and address the obstacles that hinder access to palliative care for this population.
Frailty can be defined as a geriatric syndrome characterized by functional decline and increased vulnerability to clinical stressors such as illness, injury, or surgery (1). It is postulated that frailty develops because of decreased physiologic reserves across multiple organ systems, whether from the intrinsic aging process or an accumulation of unrelated comorbidities. As these reserves diminish, minor stressors can lead to severe complications (2).
The prevalence of frailty varies in different reports, ranging from 4–59% of community-dwelling individuals (2). In a 2015 cross-section of the National Health and Aging Trends Study, a longitudinal study of noninstitutionalized older adults, 15% of older adults in the United States were frail, while 45% were prefrail, which includes those who only meet some of the criteria for frailty and are at high risk of progressing to frailty (3). Age is the most significant factor that contributes to the acceleration of frailty. As people get older, their chances of being frail increase. Frailty prevalence increased with each successive age cohort from 8.9% among those aged 65–69 years to 37.9% among those aged 90 or greater (4).
Frailty is a condition that tends to deteriorate over time. According to a 2023 review article by Kaskirbayeva et al. (5), three studies were conducted to examine the annual rates of transitions between frailty states among older adults living in the community. The studies found that the likelihood of returning to a prefrail state ranged from 3–17% per year, whereas the annual mortality rate ranged from 8–28% (5). It is important to note that the studies with younger cohorts had lower mortality rates [Ye et al.’s study population had a mean age of 69 years and 12% annual mortality (6); Thompson et al.’s had a mean age of 73 years and 8% yearly mortality (7)], while the study with the oldest cohort had higher mortality [Liu et al.’s had a mean age of 84 and 28% annual mortality (8)]. This suggests that mortality rates may tend to increase as age increases.
Worldwide, the incidence of frailty is 43.3 cases per one thousand person-years, with the incidence being significantly higher among prefrail individuals (62.7 cases per thousand) as compared to non-frail individuals (12.0 per thousand) (9).
The proportion of the world’s population aged over 60 will nearly double from 2015 to 2050 (10). While frailty is not inevitable with older age, life expectancy is increasing faster than morbidity-free life expectancy (11); so, more people are living with frailty than ever before. Given this, healthcare providers across all specialties who care for older adults, including those who deliver palliative care, will be encountering frailty in their patients more often.
Frailty models and outcomes
In addition to physical function impairment, frailty is also associated with cognitive decline (12), depression (13), and higher rates of caregiver burden and depression (14,15). Models have been developed to characterize frailty, allowing researchers to study its outcomes and identify interventions (e.g., physical activity, nutritional supplementation, social support, and cognitive stimulation) that may prevent its progression (16,17).
Fried et al. (3) developed the concept of the “frailty phenotype”, where dysregulated metabolism causes senescent musculoskeletal changes leading to sarcopenia, disability, and dependence. The “frailty phenotype” is characterized by the presence of at least three of five deficits, specified as measured slow walking speed, impaired grip strength, self-reports of declining activity levels, exhaustion, and unintended weight loss. People with three or more of these deficits are said to be frail, and those with none are said to be robust. The term “pre-frail” is used when only one or two of these deficits are present. While these changes stem from the metabolic changes of aging, they may be worsened by individual diseases. This frail phenotype was found to be independently predictive of falls, worsening mobility or impaired activities of daily living, hospitalization, and death (3,18). Subsequent studies using a simplified version of the Fried model have validated these outcomes (19-22), in addition to finding an increased likelihood of fractures (22), poor postoperative outcomes (23), post-critical care symptoms (24), major adverse cardiac events in patients with coronary heart disease (25), and Alzheimer’s, vascular, and all-cause dementia (26).
The Frailty Index model, developed by Rockwood et al. (27), a 70-item instrument that addresses the multidimensional aspects of frailty, is based on the concept that deficit accumulation—a combination of symptoms, diseases, conditions, and disability—can predict frailty (21). The Frailty Index has predicted cognitive decline or dementia, transitions to worse health, institutionalization, and death (5,27,28).
In addition to predicting adverse health outcomes and death, elements of the Fried (3) and Rockwood models (27) can be operationalized so that interventions targeting modifiable risk factors can improve patients’ function and slow frailty progression. For example, physical therapy can address sarcopenia and balance issues; nutritional supplementation and improved oral care can address malnutrition and weight loss; and cognitive/social stimulation can address cognitive frailty (16,17,29).
Screening for frailty
Several frailty screening tools have been developed for use in clinical practice. Table 1 summarizes their primary elements, advantages, and disadvantages.
Table 1
Index | Time to complete (min)* | # items | Components/scoring | Predictive outcomes | What you need to do this | Pros | Cons |
---|---|---|---|---|---|---|---|
Fried Phenotypic Criteria | <10 | 5 | Weight loss, low physical activity, exhaustion, slowness, weakness (frailty ≥3 items) | Disability, poor quality of life, falls, fractures, dementia, institutionalization, mortality, post-operative outcomes, post-critical care symptoms; cardiac events in heart disease | Self-reported history, grip dynamometer, stopwatch & premeasured length of rope | Widely studied with well-established outcomes | Requires special equipment; lacks psychosocial component |
Study of Osteoporotic Fracture index | <5 | 3 | Weight loss, exhaustion, unable to rise from chair 5 times (frailty ≥2 items) | Falls, fractures, disability, death | Self-reported history, chair | Well-studied; includes physical exam without special equipment | Lacks psychosocial component |
FRAIL scale | <10 | 5 | Fatigue, resistance, ambulation, illness, weight loss (frailty ≥3 items) | Disability and mortality in African Americans | Self-reported history | Easy to remember | Does not include physical exam; lacks psychosocial component |
Edmonton Frailty Scale | <5 | 9 | Cognition, health, hospitalization, social support, nutrition, mood, function, continence (frailty = scores ≥7) | Post-operative and inpatient outcomes in specific populations | Self-reported history, chair, paper & pen | Multidimensional including psychosocial component | Contains relatively more items; outcomes less established |
Clinical Frailty Scale | <5 | 1 | Visual and written chart for frailty with 9 graded pictures; 1= very fit; 9= terminally ill (frailty cutoff ≥5) | Morbidity, mortality, mobility, functional decline, cognitive decline, institutionalization | History (self-reported or chart data) | Holistic; can be extracted from medical charts | Variable based on clinician’s judgement |
Walking speed | <10 | 1 | Speed over 5–10 meters with 2.5-meter acceleration phase (assess for frailty further if ≤0.8 m/s) | Falls, disability, dementia, hospitalization, and death | Stopwatch & premeasured length of rope | Simple, objective measure | Does not include history |
The Fried Phenotypic Criteria model (3) is one of the most widely published, often using simplified versions of the five criteria (i.e., weight loss, weakness, poor endurance, slowness, and low activity) defined in Fried’s original model. Numerous well-established outcomes, as aforementioned, support its validity for clinical use. However, this screening tool requires a grip dynamometer that may not be readily available in most clinics.
The Study of Osteoporotic Fracture (SOF) index (22) has been shown to predict disability (20,21), falls, fractures, and mortality (20). It contains only three components (weight loss, exhaustion, and difficulty with repeatedly rising from a chair) without requiring special equipment.
The FRAIL scale (32,33), developed by the International Academy of Nutrition and Aging, can be conducted with a self-reported history alone. It may better predict disability and mortality in African Americans than the Fried Phenotypic Criteria or the SOF index (21).
While the Fried Phenotypic Criteria, the SOF index, and the FRAIL scale assess only the physical dimension of frailty, other screening tools have been developed for clinical use addressing the multidimensional concept of frailty. For example, the Edmonton Frailty Scale (34) includes cognition, mood, history of hospitalizations, and social support. It has been shown to predict postoperative delirium in older non-intensive care unit patients undergoing elective surgery (35), increased length of stay in arterial vascular surgical patients, and increased comorbidity and length of stay in patients with acute coronary syndrome (30).
A unique screening tool is the Clinical Frailty Scale (36,37), a visual and written chart of nine categories of functional status along the continuum from “very fit” (category 1) to “terminally ill” (category 9). Clinicians select which grade best describes how the patient performs globally at baseline, e.g., over the past two weeks before an acute episode. It has been well-validated to correlate with the 70-item Frailty Index in predicting mortality and institutionalization (36). It additionally has been shown to predict morbidity and functional and cognitive decline (38). Despite being based on clinician judgment instead of automatic scoring, inter-rater reliability was exceedingly high (36,37).
Walking speed has been well-studied to predict falls, disability, dementia, hospitalization, and death (39). It has been referred to as the “sixth vital sign” and has been validated to correlate with the Fried Phenotypic Criteria (31). One study found that persons aged 75 or older with a walking speed <0.8 m/s are at an exceptionally high risk of frailty (32.1%) (31), which may be considered as the cutoff for further frailty evaluation.
When to consult palliative care
Older adults are heterogeneous concerning their health status; many are healthy and independent, while others have co-morbidities and functional impairment. Based on the previously described outcomes, screening positive for frailty contextualizes an individual’s functional decline within a trajectory toward increased morbidity and mortality.
Once frailty is found, a comprehensive assessment of the physical, functional, and psycho-social dimensions of care is required to identify conditions that can be potentially ameliorated and to establish a treatment plan that is centered on the patient. Given frailty’s complex symptoms and increased mortality, frail individuals may benefit from specialty palliative care. However, while specific guidelines do not exist yet for when palliative care should be consulted in this population, it has been proposed that palliative care consultation should be considered when frail individuals experience continued functional decline, increased healthcare utilization, and uncontrolled symptoms (40). We argue that consultation should be considered as soon as frailty is identified so that specialty palliative care can assist with communication surrounding disease trajectory and treatment preferences and establish a longitudinal relationship with patients and their families. In the next section, we review the assessment and management of palliative care needs of frail older adults.
Palliative care needs in frailty
The evaluation of the palliative care needs of frail older adults should be comprehensive and include multidisciplinary team members whenever possible. It should consist of elements of a comprehensive geriatrics assessment in addition to the evaluation of the palliative care needs of the individual. The team should include a physician or advanced practice provider, physical therapist, occupational therapist, social worker, nurse, pharmacist, and mental health provider. The assessments should span physical, psychological, cognitive, sociocultural, and spiritual domains as well as functional status, including mobility, falls, nutrition, and instrumental and basic activities of daily living. Information should be obtained directly from patient and caregiver history whenever possible. Laboratory tests, radiological images, and other studies may aid in diagnosing conditions that affect quality of life. Using a formal frailty screening tool (Table 1) will assist in determining conditions associated with frailty and providing prognostic information. Table 2 outlines the major components of the clinical assessment.
Table 2
Domain | Elements |
---|---|
Physical symptoms | Pain, weakness, fatigue, anorexia, dry mouth, bowel and bladder function, visual and hearing impairment, organ dysfunction |
Sleep | Sleep pattern, insomnia, hypersomnia |
Cognitive status | Cognitive evaluation, decision-making capacity |
Psychological well-being | Depression, anxiety, irritability, loneliness, isolation |
Functional status | Activities of daily living (ADL). Instrumental activities of daily living (IADL) |
Mobility | Falls, gait, and balance |
Nutrition | Weight loss, anorexia, albumin level |
Medications | Polypharmacy, adverse reactions (e.g., anticholinergic side effects, sedation, confusion, anxiety, dizziness, falls, etc.) |
Goals of care | Desire for life-sustaining therapies, code status, organ donation, transition to a comfort-care approach and hospice |
Social well-being | Living situation, social support, financial concerns, health insurance coverage, caregiver needs, community resources, designated healthcare and financial agent, advanced directives, living will, caregiver burnout |
Spiritual well-being | Religion, spirituality, faith community, existential concerns, fear of death |
Symptom-based screening questionnaires, many of which can be given to patients or caregivers to complete before office visits, can quickly identify which symptoms are most burdensome. Table 3 (41-47) lists often-used screening questionnaires, which may help identify distressing symptoms that are associated with frailty and commonly seen in the clinical setting. Although this table does not address every potential symptom, it will help recognize bothersome symptoms in the outpatient setting. Common symptoms in frail older adults include pain, fatigue, weakness/slowness, depression, falls, and weight loss (48); these, among others, are discussed in more detail below.
Table 3
Domain | Elements | Time to administer | Who can administer? |
---|---|---|---|
Frailty symptom screen in primary care | |||
Edmonton Symptom Assessment Scale (41) | 10-item questionnaire | ~2 minutes | Patient, caregiver, provider |
Cognition | |||
AD8 (The Eight-item Informant Interview to Differentiate Aging and Dementia) (42) | 8-question screener | ~3 minutes | Patient, caregiver, provider |
Mini-Cog Test (43) | 3-word recall, clock draw | ~3 minutes | Provider |
Depression/anxiety | |||
Geriatric Depression Scale (short form) (44) | 15 yes/no questions | ~5 minutes | Patient, caregiver, provider |
PHQ-4 (The Four Item Patient Health Questionnaire for Anxiety and Depression) (45) | 4-question screener | ~2 minutes | Patient, caregiver, provider |
Polypharmacy/deprescribing | |||
STOPPFrail Version 2 (Screening Tool of Older Persons Prescriptions in Frail Adults) (46) | 25 deprescribing criteria | ~7 minutes | Provider |
Caregiver assessment | |||
Caregiver Self-Assessment Questionnaire (47) | 8-question screener | ~5 minutes | Caregiver, provider |
Pain
Pain is often missed or sub-optimally treated in frail older adults, especially when dementia is a coexisting diagnosis (49). The prevalence of pain in individuals with frailty is like those with cancer (50), with frailty being associated with increased pain severity (51). Thus, a thorough pain assessment should be performed during every clinical encounter. Obtaining collateral information from family and caregivers can aid in the evaluation of undertreated pain in patients with dementia, along with using non-verbal pain scales and inquiring about behavioral symptoms. Prescriptions should consider patients who may be unable to communicate their pain needs by writing for the medication to be scheduled rather than given as needed. The Pain Assessment In Advanced Dementia (PAINAD) tool is helpful for pain assessment in patients with dementia who cannot communicate (52). A similar tool is the Abbey Pain Scale, which can be completed in about one minute for individuals with severe dementia who are unable to articulate their needs (53).
Recommendations
- Non-pharmacologic approaches should be explored whenever available and appropriate, including physical therapy, heat or cold packs, massage, and acupuncture.
- When initiating a pain medication, “start low and go slow”, especially with opioids. Remember to “go” and continually assess the potential for sub-optimal treatment.
- Closely monitor the adverse effects of analgesics and modify the regimen if there are undesirable adverse reactions.
- Consider starting a bowel regimen when prescribing any opioid, as constipation is more prevalent in frail older adults (54).
- Target different types of pain with non-opioids whenever possible, e.g., selective norepinephrine reuptake inhibitors (SNRIs) for neuropathy or topical analgesics for localized superficial pain.
- Consider scheduling low doses of non-opioid medications around the clock to provide basal relief for patients with chronic pain.
- Non-steroidal anti-inflammatory drugs should be avoided or only prescribed for a short period due to gastrointestinal, renal, and cardiac toxicity.
Fatigue
Fatigue is a common and distressing symptom in frail older adults. Palliative care providers should be comfortable assessing, managing, and making recommendations for fatigue in this population (40). The severity of fatigue may be determined by the extent to which it interferes with activities of daily living and quality of life. Reversible causes (e.g., anemia, infections, Parkinson’s disease, medication side effects, depression, deconditioning, poor sleep, organ dysfunction, etc.), once identified, should be treated accordingly. Exercise and physical activity remain the mainstay therapy for frailty-associated fatigue (55). Referrals to physical and occupational therapists should be considered with the goal of improving physical fitness and educating patients in the practice of energy conservation, which entails lifestyle modification to conserve limited energy reserves for interactions or parts of the day that matter most while forgoing tasks that do not contribute to quality of life.
Recommendations
- Review medications to identify those with potential side effects of fatigue, drowsiness, and orthostatic hypotension. De-prescribe these medications if possible or schedule them at bedtime.
- Assess sleep quality and avoid long naps (over thirty minutes) late in the day. Make recommendations for improved sleep hygiene, referral to a sleep clinic or sleep study if indicated, or referral for cognitive behavioral therapy (CBT) for chronic insomnia treatment (see Sleep problems below).
- Consider a scheduled exercise program, Tai Chi, or yoga, as regimented physical activity helps improve fatigue (55-57).
- Counsel on smoking cessation, eating well, and avoiding alcohol.
Sleep problems
Insomnia and difficulty sleeping are common and complex issues in frail older adults. Poor sleep in older adults has been shown to increase inflammatory markers, causing a cascade of ill effects, including reduced muscle mass, increased risk for sarcopenia, and functional decline (58). Sleep duration can point to an older adult being at increased risk for frailty. Older adults who either sleep short periods (5 hours or less) or longer periods (9 hours or more) have an increased risk of frailty compared to those who sleep 7–8 hours (59). Older adults who sleep an average of 10 hours or more are three times more likely to be frail (60), and older adults who have sleep-onset insomnia are more likely to have poorer physical performance, which drives increased frailty (61).
Recommendations
- Assess all possible contributors to sleep dysfunction (e.g., pain, anxiety, depression, caffeine intake, medications, etc.).
- Review and recommend basic sleep hygiene as a first step.
- Review medications to identify those with potential side effects that interfere with sleep, such as diuretics or activating medications. Schedule them early in the day if possible or deprescribe.
- First-line therapies include CBT and other non-pharmacological interventions, e.g., Tai Chi (62-64).
- Pharmacotherapy should be carefully considered and individualized due to adverse effects of sleep agents such as gait instability and falls, cognitive dysfunction, daytime sleepiness, urinary and bladder dysfunction, etc. Benzodiazepines and anticholinergics are considered inappropriate medications for older adults (65).
Cognition
Cognition is one of the critical components in evaluating frail older adults, who are more likely to experience cognitive impairment (50). Furthermore, frail adults with cognitive impairment are three times more likely to become entirely dependent on assistance for activities of daily living than those without (50). “Cognitive frailty” is defined as cognitive impairment with concurrent physical frailty without the underlying diagnosis of a neurodegenerative disorder (66). Adults with cognitive frailty are at increased risk of death, disability, hospitalization, and progression to dementia compared to those with either physical frailty or cognitive impairment alone (66). Cognitive status can be quickly assessed during a clinical encounter (Table 3), and healthcare providers can offer strategies and education on preventing further cognitive decline.
Recommendations
- Recommend regular, safe physical activities to the patient; regular physical activity has been shown to help preserve cognitive and physical function. Consider a structured exercise program such as Tai Chi (67).
- Encourage “brain health” and a healthy lifestyle, including a nutritious diet, active social engagement, adequate sleep, and mentally stimulating activities.
- Identify and screen for potential safety concerns, such as driving safety, medication management, elopement risk, firearm use, and financial exploitation.
- Discuss goals of care and advanced care planning while the patient still can participate in these discussions. Once these discussions happen, ensure that the appropriate paperwork is completed (advanced directive, living will, etc.).
Mood
As frail older adults develop more functional impairment, they are more likely to experience anxiety, depression, and an overall loss of well-being (50). Investigations into physical symptoms or debility may unmask depression or anxiety as a contributing factor. Refer to Table 3 for quick screening references for anxiety and depression.
Recommendations
- Refer to social work and spiritual care to assess the patient’s support system, health beliefs, and potential stressors, and identify community resources to support that patient and caregivers.
- Refer to counseling such as CBT for depression and anxiety management (68). CBT is one of the most evidence-based psychological interventions for treating depression and anxiety disorders.
- Consider starting a selective serotonin reuptake inhibitor (SSRI). SSRIs are well tolerated in older adults and are commonly prescribed for managing depression and anxiety in this population (69).
- To target concomitant pain, consider starting a SNRI.
Falls
Falls are a common symptom of frailty associated with a high risk of disability and mortality among older adults. A fall assessment should be done for any patient when concerned about the onset of frailty, as this may be one of the first signs of decline (70,71). In fact, the risk of falls is routinely assessed at Medicare Wellness Visits. Screening for fall risk, such as with walking speed or the SOF Index (Table 1) and developing a treatment plan can help to prevent future falls in this population. Common causes of falls include medications, orthostatic hypotension, osteoarthritis, and neurologic conditions (e.g., peripheral neuropathy, stroke, etc.) (72). The Centers for Disease Control and Prevention (CDC) has published screening tools to systematically screen for fall risk and education material for healthcare providers, patients, and caregivers to identify risk factors and interventions to prevent falls (72). Management of recurrent falls or fall prevention should be tailored to the most likely underlying cause.
Recommendations
- Complete a physical exam that includes checking orthostatic blood pressure, vision, gait, and neurological status to identify potential fall risks.
- Perform a medication review and discontinue medications that may contribute to recurrent falls.
- Recommend a medical alert system of fall alarm for older frail adults living alone with a risk of falls.
- Refer to physical and occupational therapists for gait and strength training, home safety evaluation, and prescription of mobility assistive devices. Involve family or caregivers whenever possible.
Nutrition and anorexia
Nutrition is another modifiable risk factor for frailty. Undernutrition and overnutrition (i.e., obesity) can increase frailty risk (73). Anorexia associated with frailty requires thorough assessment (74,75). Nutritional status can be assessed using the Short Nutritional Assessment Questionnaire (SNAQ) (74). For frail older adults at risk for malnutrition, consult with a nutritionist early and consider liberalizing dietary restrictions. Identify and treat reversible causes such as esophageal candidiasis or Schatzki ring for patients with dysphagia. For other causes of dysphagia such as Parkinson’s disease or diabetic gastroparesis, consult speech and language pathologists and encourage frequent small meals.
Recommendations
- Combine nutritional supplements with exercise training, which has been shown to improve frailty scores (76).
- Involve caregivers to assist patients with difficulty feeding themselves.
- Assess oral hygiene. Identify and treat denture fitting problems.
- When individuals with advanced dementia experience eating difficulties, strong consideration should be given to careful handfeeding instead of artificial feeding. The American Geriatrics Society published a position statement regarding feeding tubes in patients with advanced dementia and recommended against feeding tube insertion in this population. Instead, careful handfeeding is considered a more beneficial approach (77).
Polypharmacy and principles for prescribing
Polypharmacy is defined as the regular use of five or more medications, including over the counter (OTC) medications. Frailty predisposes older adults to polypharmacy, along with increased risk of adverse drug reactions, extended hospital stays, falls, and mortality (78). The likelihood of a newly prescribed medication contributing to polypharmacy increases with greater numbers of comorbid conditions (78). Thus, comprehensive medication reconciliation and review are imperative at every clinical encounter for frail older adults.
When prescribing a new agent, follow the Principles of Prescribing: starting low and going slow (but still “going”), increasing the dose slowly (as tolerated), avoiding starting multiple medications simultaneously, and making directions clear and easy to follow. If available, consult a pharmacist to perform a comprehensive medication review before or after the visit. Pharmacists can help identify inappropriate medications, potential adverse interactions, and medications or dosages that may benefit the patient but are not being prescribed.
Recommendations
- Ask patients to bring all their medications (including supplements and OTC medications) to the visit.
- Reduce or discontinue inappropriate or ineffective medications.
- Simplify dosing regimens.
- For frail patients with a life expectancy of less than 12 months, consider utilizing STOPPFrail Version 2 (Table 3) to help guide deprescribing. When used, one in four medications was stopped with an almost 30% reduction in average monthly medication cost (46).
Goals of care
Goals of care conversations should involve patients, family, and caregivers to ensure they understand their wishes, especially in patients with cognitive impairment. These conversations can take time and be emotionally taxing for providers, patients, and families; thus, starting with small introductions to these topics can be helpful. Consider using the REMAP mnemonic as a guide—R: Reframe, E: Expect Emotion, M: Map out the Patient Goals, A: Align with Goals, P: Propose a Plan (79). Social workers or other team members with good patient/family rapport can facilitate these conversations.
Recommendations
- Revisit goals of care following each hospitalization, significant decrease in function, new diagnosis, or exacerbation of a severe comorbid illness.
- Ensure that advanced directives are complete, including the designation of a durable power of attorney (DPOA) for medical decision-making. Recommend establishing financial power of attorney with a lawyer.
Psychosocial and spiritual support
Older adults with frailty have been shown to have a disproportionately increased psychosocial burden compared to those with other chronic illnesses. This results from emotional distress that is as high as that of cancer patients, along with the greatest desire for death and the lowest hopefulness and perceived social support among diseases studied (50). Identifying spiritual preferences should be a regular part of palliative care intake but may be overlooked. Spirituality has been shown to lessen the negative impact of depression and stress in frail older adults (80).
Recommendations
- Screen for any gaps in social support by asking about the living situation, relationship status, access to transportation, caregiver availability, financial concerns, and social engagement opportunities. Assess stress related to these gaps.
- Ask open-ended questions regarding spirituality to see if this could be a potential layer of support or another source of distress.
- Consider using the HOPE tool to guide questions on spirituality and how it can be addressed in their medical care—H: Sources of Hope, O: Organized Religion, P: Personal Spirituality and Practices, E: Effects on Medical Care and End-of-Life Issues (81).
- Once spiritual needs are identified, ask patients whether they would like to involve a spiritual leader in the community in their care. Consult hospital or clinic chaplains when available.
- Seek additional community resources, such as in-person or virtual support groups.
Caregiver burden and support
Due to incapacity associated with frailty, frail adults often need caregivers to aid with daily activities inside and outside the home. Caregivers may include spouses, children, other family members, friends, neighbors, or paid providers. Studies have shown that caregivers may suffer from extensive physical, emotional, and financial burdens when caring for older adults in the community and may have increased anxiety and depression (82).
Recommendations
- Regularly screen for caregiver burden to ensure the patient’s and caregiver’s safety and well-being, which can be done using the Caregiver Self-Assessment Questionnaire (Table 3).
- Be mindful that many caregivers may also suffer from frailty or prefrailty (83).
- Involve social workers and home health services to identify resources in the community to lessen the caregiver burden, such as adult daycare centers, local Programs of All-Inclusive Care for the Elderly (PACE), and caregiver support groups.
Access to palliative care
Access to specialty palliative care remains an issue for frail older adults. For example, a study comparing hospitalized patients whose primary diagnosis was cancer, end-stage renal disease, cardiopulmonary failure, or frailty found that frail patients were the least likely to receive palliative care consultations (43.7% compared to 73.5% of cancer patients) (84). Studies of access to outpatient palliative care among frail patients are lacking, possibly due to the difficulty of recognizing frailty as an indication for palliative care compared to those with active cancer, whose functional decline tends to be more precipitous. One study of long-term care facilities showed that only 27% of nursing homes had specially trained staff in hospice or palliative/end-of-life care (85). Despite this, nursing home residents have been increasingly dying in the hospital instead of being made comfortable where they reside (86).
Two emerging models that address these access barriers include telehealth and home-based palliative care (HBPC). Palliative-care telehealth has been shown to have improved quality of life, decreased symptom burden, and lessened depressed mood in a phone-delivered trial among rural cancer patients (87); however, a different study revealed mixed results on such outcomes (88). A study of telehealth delivered in nursing homes showed increased goals-of-care documentation and decreased acute care use (89). Despite its promise, telemedicine faces barriers, such as technological literacy, access to computers and phones, internet bandwidth, and cellular service (90). Additionally, patients may suffer from hearing or cognitive impairment, increasing the dependence on caregivers to complete these visits (91).
For patients for whom telehealth is not feasible, HBPC remains an attractive alternative, especially considering that homebound patients have a two-year mortality of 40% (92). HBPC is expanding through hospice organizations (93), allowing for a more seamless transition to end-of-life care. HBPC is cost-effective by decreasing healthcare utilization (94-96). However, HBPC practice patterns are variable, with a lack of quality standards, which may lead to hesitation among patients to enroll and providers to recommend their services (97,98). Without a palliative care benefit for payment, programs that operate via a fee-for-service model often have little to no administrative support staff and do not offer non-billable services such as social work or spiritual care (98).
In addition to access issues, lack of palliative care knowledge and awareness among patients and providers remains a significant obstacle (99). A review of advanced care planning in older individuals identified several patient beliefs as barriers, such as that talking about the end of life is equivalent to “giving up” (100). Such ideas can be addressed through patient education and thoughtful communication by providers, who may face gaps in palliative care knowledge and skills; this remains a concern even among geriatricians, despite their services often overlapping with those of palliative care specialists. Similarly, palliative care providers may lack familiarity with the components of geriatric assessment and syndromes. For physicians, fellowship training programs that combine specialty geriatric and palliative care training are on the rise, but the development and expansion of these programs face significant funding shortfalls (101).
Models of care
Models of care focusing on palliative care for older adults with frailty are beginning to gain attention in medical literature. In 2016, Bone et al. (102) developed a short-term integrated palliative and supportive care (SIPS) framework for frail older adults with non-malignant conditions living in the community. A qualitative study of the perspectives of adults from this population, along with their caretakers and other stakeholders, revealed that the SIPS model should aim to improve symptom management (encompassing both physical and psychosocial distress), facilitate end-of-life discussions, and reduce adverse outcomes such as caregiver burden and unplanned hospital admissions (102).
In addition to the SIPS model, the Palliative and Therapeutic Harmonization (PATH) model focuses on treatment decision-making for frail older adults (103). This structured framework recommends step-by-step assessments across three subsequent encounters centered around medical or surgical decision-making for frail older adults. Decisions for less aggressive care (i.e., forgoing hemodialysis, cardiac surgery, or other procedures) correlated with more advanced stages of frailty or dementia (103). Steps for implementation of the model are now listed on the PATH website. A PATH smartphone app may be used to perform a quick frailty assessment based on history and a cognitive screen, followed by guideline recommendations tailored to the level of frailty (104).
Patient priorities care (PPC) is another model addressing the goals of care and treatment preferences for older adults with frailty (105). PPC consists of continuously identifying patient values, translating them into actionable goals, documenting them in the electronic health record, and ensuring that all care aligns with those goals. The model begins with a visit focused solely on establishing patient priorities, after which patients and providers collaborate to decide on a series of trials of stopping, starting, and continuing interventions across successive visits, accompanied by frequent check-ins to reestablish goals along the way. PPC has been shown in a non-randomized clinical trial to decrease treatment burden, lead to the discontinuation of more medications, and reduce self-management tasks for participating patients (106). Like the PATH model, PPC offers patients, caregivers, and providers an immersive website with tools, resources, and decisional guides (105).
Finally, multiple healthcare systems have moved towards becoming Age-Friendly Health Systems by addressing the “4Ms” of high-quality care: What Matters, Medication, Mentation, and Mobility (107). This framework has been shown to improve outcomes across multiple physical and psychological domains (108). It provides a reference for combining geriatrics and palliative care aspects in delivering comprehensive care to frail older adults.
Strengths
Only a few studies have explored the importance of palliative care in frailty. Our paper contributes to the existing literature by serving as a guide for clinicians who care for older patients with frailty in an outpatient setting. To compile this information, we conducted a thorough review of the literature. We presented the fundamental concepts of frailty, screening methods for frailty, the role of palliative care, the components of a comprehensive patient evaluation, and treatments for symptoms commonly associated with frailty. We also review emergency models of care for older adults with frailty.
Limitations
This is a comprehensive review of the literature and not a systematic review. We only identified limited high-quality studies in palliative care interventions among adults with frailty. We included only the most relevant screening tools for clinical practice and reviewed the most common symptoms of frailty. We did not identify a prognostic tool designed for frailty in the literature, even if frailty is associated with increased mortality. This indicates that there is a need for future studies investigating more accurate prognostic information and effective interventions from palliative care among adults with frailty.
Conclusions
Frailty develops from musculoskeletal and metabolic changes with aging and deficits accumulated from multimorbidity to decreased functional reserve. Its progression leads to increased disability, institutionalization in care facilities, and mortality. As the population ages, healthcare providers will find a greater imperative to identify frailty, intervene in its progression, and treat its symptoms. Palliative care consultation should be considered when patients experience continued symptoms or functional decline, as well as those with complex psychosocial needs or who may benefit from in-depth discussions around medical decision-making. While access to specialty palliative care may be limited, a few models exist (i.e., the SIPS, PATH, PPC, and “4Ms” models) for providers from geriatrics, primary care, and other specialties to integrate palliative care into their practice to deliver more patient-centered medicine.
Acknowledgments
Funding: None.
Footnote
Provenance and Peer Review: This article was commissioned by Guest Editors (Pragnesh Patel, Susan Nathan and Lara Skarf) for the series “Outpatient Palliative Care in Geriatric Clinics” published in Annals of Palliative Medicine. The article has undergone external peer review.
Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-23-559/prf
Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-23-559/coif). The series “Outpatient Palliative Care in Geriatric Clinics” was commissioned by the editorial office without any funding or sponsorship. The authors have no other conflicts of interest to declare.
Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.
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