What is meant by ‘reducing care burden’?
As older people approach the end of life, treatments designed to prevent or cure illnesses may no longer provide benefits and can be unnecessary or burdensome. [1] Long-term medications might even cause harm as the body becomes more vulnerable to adverse drug effects through ageing and illness. [2] Interventions such as diagnostic tests, late-stage cancer treatments, emergency department visits, or hospitalisations may add discomfort, distress and financial costs without improving quality of life. [3] Similarly, highly medicalised hospital care near the end of life is inappropriate if a person would prefer to be kept pain-free and comfortable at home and can be supported to do so. [4]
Reducing care burden involves carefully reassessing treatments ensuring they align with a person’s goals and wishes. This includes providing clear information about the risks and benefits of each treatment and supporting informed decision-making. Simplifying care may involve discontinuing certain therapies, adopting alternative approaches, or reducing interventions with limited benefit. [5] It can also include relaxing dietary restrictions and de-escalating or ceasing the monitoring of chronic disease targets, such as blood glucose levels, as the end of life nears.
Why reducing care burden matters in aged care
Reducing any care burden is important in aged care as the primary aim of palliative and end-of-life care is to relieve distressing symptoms and enhance quality of life for the time the person has remaining. [6] For older people with limited life expectancy, therapies should prioritise short-term symptom relief and make meaningful contributions to comfort and wellbeing. Treatments that do not align with these goals may increase discomfort, distress, or unnecessary complexity without offering significant benefit.
Palliative care and end-of-life care are now integral to Standard 5 of the strengthened Aged Care Quality Standards. [7] Within this standard, Action 5.7.3 highlights the need to plan and deliver care that prioritises comfort and dignity. Providers must also anticipate burdensome symptoms through proactive prescribing and avoid unnecessary hospital transfers that may conflict with the person’s care preferences (Action 5.7.4). By reducing the care burden, aged care providers can ensure that care remains person-centred, respects individual goals, and supports a better end-of-life experience for both the person and their family.
What the evidence tells us
Multimorbidity and polypharmacy
Multimorbidity is common in older people as the risk of developing a chronic condition increases with age. Many aged care recipients therefore regularly take five or more medications—a state known as ‘polypharmacy’. [8] This situation may arise when a person’s individual conditions are treated by different clinicians in an uncoordinated way, or when an individual prescriber adds and continues medications indefinitely without rationalising the treatment regimen. It can be made more complex when over-the-counter and complementary therapies are involved. [9] While polypharmacy may be appropriate in some circumstances, it is associated with decreased quality of life. [8] It can affect physical and cognitive function and may increase the risk of falls and medication-related hospital admissions in older people. [10,11]
Residential aged care providers are required to report on polypharmacy data (nine or more medications) as part of the National Aged Care Mandatory Quality Indicator Program. This includes polypharmacy affecting people at the end of life. [12]
Medication review
People of advanced age, those with multimorbidity, dementia, frailty, or limited life expectancy are at higher risk of adverse drug effects. [13] General practitioners (GPs) and pharmacists should therefore regularly review the combined list of medications of vulnerable patients to ensure that all prescribed treatments remain appropriate to changing needs.
From July 2024, aged care providers and community pharmacies can employ pharmacists to work onsite in residential aged care homes as part of the Aged Care On-site Pharmacist (ACOP) Measure. [14] Introduced in response to recommendations from the Royal Commission into Aged Care Quality and Safety, this optional initiative aims to improve medication safety and use, particularly for high-risk medications, while supporting day-to-day medication management through regular reviews and prompt issue resolution. It also enhances access to pharmacist advice for residents and staff and fosters collaboration between onsite pharmacists, general practitioners, nurses, and local pharmacies.
For residential aged care homes without an onsite pharmacist, or for people living in their own private homes, the GP can request a comprehensive medication review by a credentialled pharmacist. This collaborative assessment evaluates all medicines a person is taking, aiming to discontinue those with potential for harm and optimise those continuing to provide benefit. [2] In Australia, two types of medication reviews are subsidised under the Medicare Benefits Schedule (MBS). These are the Residential Medication Management Review (RMMR) for those in residential aged care (without an onsite pharmacist) and the Home Medicines Review (or Domiciliary Medication Management Review) for people living in their own home. [2]
After a RMMR, a report with recommendations from the medication review is provided to the GP, who is responsible for implementing the recommendations in consultation with residents, carers and facility staff. Evidence suggests that RMMRs are effective in identifying medication-related problems in older people and reducing the use of inappropriate medications. [15] However, the extent to which GPs implement review recommendations varies widely and often depends on the strength of collaboration within the multidisciplinary team. [2,15-17].
Deprescribing
Deprescribing is a person-centred, proactive intervention carried out by medical professionals to discontinue medications that do not provide clear benefits, may cause harm, or are no longer relevant to the person’s goals of care. [18] Decisions to cease or change medications should also be based on anticipated life expectancy and whether they provide comfort and symptom relief. [13] Medications that take longer to work than the person is expected to live may offer no benefit and instead add unnecessary burden. [19]
Deprescribing has proven effective in reducing medication use and costs in older people; however, there is still limited evidence on its impact on other outcomes, such as hospitalisations, adverse events, or quality of life. [20,21]
Person-centred decision making
Deprescribing decisions and priorities should be shared with the older person so that they align with their goals, values and preferences. This involves discussing together the purpose, benefits, risks, and burden of each medication under review and asking the older person what they want to do.
Some people may be distressed at the idea of reducing or stopping certain medications, fearing the return of symptoms, worsening conditions, or withdrawal syndromes. [22] Others may perceive it as a sign that they are no longer valued or worth treating. [18] It is important to explore the concerns of the older person and their family, providing reassurance that deprescribing aims to reduce burden and improve quality of life as part of an active treatment plan. [18] Framing the discussion around why a medication should be continued can be a more positive approach than focusing solely on reasons for discontinuation. In some cases, a person may decide to continue an unnecessary medication. [23]
Evidence-based tools and guidelines
A variety of tools and guidelines are available to assist clinicians in deprescribing medications for older people with limited life expectancy. [24] These resources range from simple medication lists to detailed step-by-step protocols or models and frameworks. [25] They might target specific medications for deprescribing or focus on populations such as people with advanced dementia, [26] frailty (e.g. STOPPFrail version 2), [27] or cancer (OncPal deprescribing guideline). [28] While these tools can be useful, most are based on expert knowledge and experience rather than evidence from research. [29]
Multidisciplinary collaboration
Deprescribing plans should be clearly documented and communicated to the full multidisciplinary team, with reasons for changes and indicators for resuming medications if necessary. This team is likely to include general practitioners, pharmacists, nurses, specialists, and allied health professionals. [18]
Safety and monitoring
Ceasing medications can cause adverse effects such as withdrawal symptoms or a return of disease symptoms. [18] Slow reduction of one medication at a time is therefore advised, beginning with those that have the highest level of burden and provide the least amount of benefit. Monitor for response to changes, adjusting care as needed. Use subcutaneous or transdermal routes of administration as swallowing becomes difficult. [30]
Care transitions between aged care homes and hospitals have historically been linked to a high risk of medication errors and adverse events. [31] Changes made in hospital may not be communicated effectively to the resident, family, GP, or residential care home staff, with evidence suggesting communication can be one-directional with little active engagement of the person or shared decision-making. [32]
Provider-related barriers to deprescribing
GPs recognise deprescribing as an important aspect of good end-of-life care but may hesitate to implement this due to challenges including:
- Lack of knowledge, confidence or experience in deprescribing [33]
- Insufficient evidence to guide deprescribing in people with limited life expectancy [34]
- Concerns for consequences of stopping a medication [35]
- Time or resource restraints [34]
- Difficulty discussing end-of-life issues with patients and their families [36]
- Pressure from facility staff to prescribe certain medications [35]
- Patients and/or family reluctance to make changes [33,36]
- Caution in altering treatments prescribed by specialists [34,36]
- Poor communication and collaboration among healthcare providers. [34]
Care of people with dementia
People living with dementia often have multiple chronic conditions that require ongoing medication management. This contributes to high rates of polypharmacy in this population, [37] and an increased risk of medication-related issues, including adverse reactions. [38] While Australian guidelines provide prescribing recommendations for people with dementia, they offer limited guidance on managing multimorbidity and polypharmacy. [39]
Psychotropic medications, including antipsychotics, are commonly prescribed for people with dementia in residential care. [40,41] More than a quarter of Australian aged care residents receive at least one psychotropic medication regularly. [42] These drugs are typically used to manage behavioural and psychological symptoms of dementia, which can be distressing for residents and challenging for staff. However, evidence supporting their long-term effectiveness is limited and their use carries known risks. [42] Non-drug approaches should be considered first to reduce reliance on psychotropic medications and minimise the risk of adverse effects.
Strategies with some supporting evidence include:
- Music therapy
- Functional analysis-based interventions, such as Dementia Care Mapping, to understand the meaning behind behaviours
- Aromatherapy
- Stepped analgesia for pain relief. [43,44]
Transitions into residential aged care often trigger an increase in prescribing antipsychotics and benzodiazepines. [39] However, deprescribing efforts have been shown to safety reduce antipsychotic use without worsening behavioural and psychological symptoms of dementia [42,45] or causing withdrawal symptoms. [41] The effectiveness of deprescribing tools for people with advanced dementia remains unclear. [46] Therefore, deprescribing should be guided by a person-centred approach, carefully weighing the potential benefits of discontinuing a medication against possible harms, based on the individual’s unique needs and circumstances and in discussion with family and substitute decision-makers. [46]
Withdrawing life-sustaining therapies
Stopping life-sustaining treatments, like cardiac devices, ventilatory support, dialysis, or nutrition and fluids in the final days can be complicated. These decisions should involve the older person, their family, and the healthcare team. Treatments may no longer work or could cause more harm than good. People might ask to stop them, or a palliative care specialist may suggest it as care priorities change. Making changes gradually is often easier and less stressful than sudden adjustments. [23]
Page created 13 March 2025