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Frailty and palliative care
  1. M E Hamaker1,
  2. Frederiek van den Bos2 and
  3. Siri Rostoft3
  1. 1 Geriatric Medicine, Diakonessenhuis, Utrecht, The Netherlands
  2. 2 Geriatric Medicine, University Medical Centre Utrecht, Utrecht, The Netherlands
  3. 3 Department of Geriatric Medicine, Oslo University Hospital; Institute of Clinical Medicine, University of Oslo, Oslo, Norway
  1. Correspondence to Dr M E Hamaker, Geriatric Medicine, Diakonessenhuis, Utrecht 3582KE, The Netherlands; mhamaker{at}diakhuis.nl

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Introduction

Frailty is a syndrome evident when a threshold number of regulatory systems required to maintain human body homoeostasis are compromised by intercurrent and chronic diseases and physiological ageing. As a result, someone with frailty becomes vulnerable to adverse outcomes when exposed to stressors like an acute illness or treatment(s).1 2 Frailty can also have significant personal impact, including care dependence and loneliness.

Many different concepts of frailty exist3 and consequently prevalence data shows huge variation.4 It is not simply present or absent but a spectrum that encompasses cognitive, functional, psychosocial and somatic domains. With greater vulnerability, seemingly insignificant stressors like a urinary tract infection can cause significant incremental morbidity, like delirium or functional decline and ultimately death. Frailty may fluctuate, but over time patients usually exhibit slowly progressive decline, sometimes interspersed with disease episodes or exacerbations and (partial) recovery, with only a slight acceleration of decline as death approaches.

People with frailty have physical, psychosocial and support needs amenable to palliative interventions, but studies reveal they are less likely to access palliative care than those with advanced cancer.5 We will focus on two questions. First, why is palliative care relevant to patients with frailty and what hinders them from receiving it? Second, why is awareness of frailty and its components relevant for provision of palliative care?

The relevance of palliative care to frailty

Much end of life care is organised based on terminal illnesses like cancer,6 where the disease trajectory is somewhat predictable and prognostication is difficult but feasible.7 This is relevant, because palliative care access is generally restricted to those with cancer or a disease with similarly limited remaining life-expectancy.8 However, initiating palliative care in patients who are frail due to illnesses like chronic obstructive pulmonary disease, dementia, end-stage renal disease and heart failure (or a combination), is less straight-forward. The gradual functional deterioration of frailty makes it difficult for clinicians to identify when a patient has entered the last months of life or when a patient should receive a palliative approach.9 In addition, the prolonged trajectory means supportive and palliative services are needed for much longer than the 6-month maximum often applied.9

Given reduced cognitive skills, end of life care becomes even more complex,8 as this may hinder conversations about personal preferences and priorities.10 It is a risk factor for inadequate signalling of symptoms like pain.11 Furthermore, dementia care tends to occur at home, long-term care facilities or hospitals, which do not always have access to palliative expertise.8 Therefore, a palliative approach may not even be considered when hallmark complications of dementia occur such as aspiration pneumonia, dehydration or dysphagia.10

Adequate advance care planning in frailty (with or without dementia) is often absent.8 Many will have extensive comorbidities, but in a single-organ focussed healthcare system, discussions about future care likely focus on a single condition rather than full spectrum health status. A broader perspective about how to approach the next exacerbation and avoid interventions of uncertain benefit could improve the patient trajectory.12 Without planning, frail patients may receive inappropriate medical care, including unwanted and burdensome transitions to hospitals, emergency rooms and invasive diagnostic procedures or treatment.13 Although frailty itself is seldom a cause of death, the increased vulnerability means severe frailty should be considered a terminal illness. It is crucial for clinicians, patients and family members to recognise this and align goals of care with frailty burden.

This requires quantifying frailty beyond simple clinical judgement.10 Currently, there is no standard frailty assessment for palliative care. For most available instruments it is unclear to what extent they are useful for monitoring changes over time or to guide decision-making.1 Nonetheless, the lack of consensus on how to optimally incorporate frailty has not prevented multiple specialities from embracing the concept and demonstrating the benefit of quantifying frailty in one way or another for healthcare provision and prognostication.1

This also allows clinicians to better engage patients and caregivers in difficult but realistic discussions about treatment and prognosis. Framing survival in terms of the number of things that people have wrong with them (ie, comorbidities, disabilities) and consequently the risk of negative outcomes like death and functional decline makes sense to physicians, patients and families.10 Acute health crises, hospital admission or use of long-term care should stimulate anticipatory care plans and clarifying patients’ preferences.14 Furthermore, periodic assessment of frailty and healthcare needs (for example the Edmonton Symptom Assessment Scale15 by the primary care provider may be a useful trigger for palliative care.8

The relevance of frailty to palliative care

In geriatric medicine, assessment of frailty includes evaluation of anxiety, care needs, cognition, comorbidities, falls, functional status, medication, mobility, mood, nutritional status and social support. The goal is not to detect impairments as a scoring system but to provide an overview of a patient’s strengths and weaknesses to coordinate and prioritise interventions and work-up aligned with their values and preferences. This has obvious overlap with a palliative care assessment.14 Whereas palliative care focusses primarily on topical issues and symptoms, a geriatric assessment also identifies underlying impairment which may not be a current issue but can be relevant in interpreting symptoms and decision-making.

A clear example is early cognitive impairment, which can be overlooked if not specifically sought.16 When the focus is on current burdens, it may not be considered relevant. However, it could impair a patient’s understanding of their situation and future trajectories and limit decision-making capacity or ability to discuss care preferences.8 Furthermore, cognitive symptoms like apathy or agitation and (hypoactive) delirium may be misdiagnosed as anxiety or depression. Awareness of cognitive impairment and delirium risk will also help choose the most appropriate medications, for example, avoiding drugs with anticholinergic activity if cognition is compromised.

This is not to say that such drugs should never be given to those with cognitive impairment or frailty. In fact, fear of side effects means these patients are at significant risk of undertreatment for burdensome symptoms.14 The concept of ‘start low and go slow’ is key, but just as important is ‘get there’.10 Various studies have shown that in dementia, behavioural symptoms, inactivity, constant demanding of attention or verbal agitation can represent unmet needs such as undertreated pain, requiring adequate symptom relief rather than psychotropic drugs.10 11 17 This highlights the critical need for optimal symptom control symptoms in frail older patients.

Another potential pitfall in providing palliative care to those with both a terminal illness and frailty is misattribution of symptoms to the illness rather than comorbidities or medication/drug use. After adjusting for inappropriate drug use, polypharmacy remains associated with higher risk of side effects.18 Deprescribing is a highly beneficial palliative intervention for frail people. Multiple deprescribing tools exist but only four tested in clinical practice; it has not been shown they improve the process or clinical outcomes.19 A sensible approach is to keep the drugs likely to contribute to quality of life or symptom control while discontinuing those that may be causing side effects or unlikely to provide meaningful benefit.10 Fewer drugs can improve compliance and make it easier to introduce new symptom control drugs.10

Functional decline and falls are important and common issues that require specific attention. One study found that among community dwelling hospice-patients, 32% had a recorded fall but only 4% had a falls risk identified.20 The consequences of falls can be catastrophic, including anxiety, care dependence, fractures, immobility and pain. People at the end of life generally want to remain active for as long as possible.20 Understanding the (often multidimensional) reasons behind the falls risk and functional decline and targeted interventions can be an important component of palliative care. An overview of recommendations for palliative care in frailty is in box 1.

Box 1

Recommendations for palliative care in frailty

  • Recognise the absence of clear thresholds for initiating palliative care in patients with frailty.

  • Periodically assess and quantify frailty burden in one way or another, for example, with a frailty instrument or geriatric assessment.

  • Periodically assess healthcare needs as triggers for initiating a palliative care approach.

  • Incorporate evaluation of cognition in all palliative care assessment for older or frail patients.

  • Consider the possibility of undertreated symptoms in case of behavioural issues in patients with dementia.

  • Utilise healthcare crises, hospital admissions or admission to long-term care as time-out moments for advance care planning discussions.

  • Discuss advance care planning in light of all of the patient’s comorbidities and impairment rather than from a single disease perspective.

  • Consider medication and comorbidities as explanations for symptoms requiring palliative intervention.

  • Discontinue ineffective, poorly tolerated and duplicated medications.

  • When treating symptoms, start low, go slow and keep going until adequate symptom control is achieved.

  • Assess falls risk and initiate targeted interventions.

  • Utilise the expertise and experience of both geriatric and palliative care specialists in the care for older patients with frailty.

In conclusion, many patients with frailty have palliative care needs that are insufficiently addressed. Given the complex nature of frailty, clinicians with specialist geriatric knowledge may be the most qualified to take the lead. Care could be improved by incorporating routine palliative care assessment with timely advance care planning. In case of persistent and refractory symptoms, referral to palliative expertise is pertinent. This will yield the greatest benefit if palliative care clinicians are aware of how frailty might impact care provision. Optimal care within the frailty trajectory requires the expertise and experience of both geriatric and palliative care specialists.

References

Footnotes

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Commissioned; internally peer reviewed.