Attitudes Towards Deprescribing Among Older Adults with Limited Life Expectancy and Their Relatives: A Systematic Review

Abstract

Background

Deprescribing is of particular importance in older adults with limited life expectancy since this population group is highly susceptible to the potential harms of inappropriate medications.

Objective

This systematic review aimed to explore attitudes towards deprescribing among older adults with limited life expectancy and their relatives.

Methods

A systematic literature review was conducted in the MEDLINE and EMBASE databases from inception to October 2019. Inclusion criteria were studies specifically describing attitudes towards deprescribing among older adults (≥ 65 years) with limited life expectancy and/or their relatives regardless of study type. Results were analyzed, inspired by the Joanna Briggs Institute’s method for synthesis of qualitative data.

Results

A total of 842 studies were identified and screened; 84 were full-text assessed for eligibility and 7 were ultimately included. Two studies investigated the attitudes of older adults with limited life expectancy and their relatives towards deprescribing of statins and donepezil, respectively, while the five remaining studies related to attitudes towards deprescribing in general. Four main themes were identified: (1) the well-being of older adults with limited life expectancy; (2) involvement of older adults and their relatives in deprescribing; (3) the role of health care professionals in deprescribing; and (4) medication-related factors affecting deprescribing. Within each of these themes, several subthemes were identified.

Conclusions

Attitudes towards deprescribing among older adults with limited life expectancy and their relatives vary and highlight several barriers and enablers to the deprescribing process. Several of these factors must be addressed to successfully implement deprescribing initiatives in this patient group.

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Author information

Affiliations

Authors

Contributions

The initial study idea was proposed by Anton Pottegård and the study was designed by all authors. Screening was performed by Carina Lundby and Alaa Burghle, and data extraction was performed by Alaa Burghle and Trine Graabæk. Final study selection was decided by all authors. Data analysis was performed by Alaa Burghle and Trine Graabæk. Alaa Burghle wrote the initial draft, and all authors participated in writing and revising the article, and read and approve the final version.

Corresponding author

Correspondence to Alaa Burghle.

Ethics declarations

Funding

No funding was used in the preparation of this review.

Conflict of interest

Alaa Burghle, Carina Lundby, Jesper Ryg, Jens Søndergaard, Anton Pottegård, Dorthe Nielsen, and Trine Graabæk have no conflicts of interest to declare.

Appendices

Appendix 1: Search Strategy

The electronic databases MEDLINE (via Ovid SP) and EMBASE (via Ovid SP) were searched from inception to October 2019. The searches were conducted combining keywords for population (older people with limited life expectancy) and intervention (deprescribing). The following search string was used:

(frail OR elderly OR old OR older OR end of life OR eol OR lifelimiting illness) AND (deprescribe OR deprescribing OR deprescription OR medication cessation OR medication withdrawal OR medication discontinuation OR inappropriate prescribing OR inappropriate prescribings OR inappropriate medication OR inappropriate medications OR unnecessary prescription OR unnecessary prescriptions OR unnecessary medication OR unnecessary medications) AND (attitudes OR perspectives OR perceptions OR enabler OR enablers OR barrier OR barriers OR belief OR beliefs). The searches were only restricted by filters for conference abstracts.

Appendix 2

Study details (first author, publication year, country, reference number) All findings Categories
Kalogianis, 2016, Australia [12] Half of the participants felt that they were taking a large number of medications
A majority of participants answered that they were comfortable with the number of medications that they were taking
Many of the participants believed that all their medications were necessary
Many participants reported a desire to reduce the number of their medications, and even more reported willingness to cease one or more of their medications, if their doctor said that it was possible
Some participants felt that they may be taking one or more medications that they no longer needed
About half of the participants would accept taking more medications for their health conditions. Many reported that they had a good understanding of the reasons for which they were prescribed their medications
Participants taking ≥ 9 medications were more likely to feel that they were taking a large number of medications compared to participants taking < 9 medications. Additionally, participants taking ≥ 9 medications were more likely to believe they experience side effects from their medications
Some of the participants stated that having to pay less for their medication would play a role in their willingness to stop one or more of their medications
Effects and adverse effects
Indication
Knowledge of medication
Medication burden
Desire and willingness to reduce medication
Cost
Tjia, 2017, USA [31] Many participants disagreed with the statement that they have been previously told that they should never discontinue their medication
Many participants did not agree with the statement that discontinuing their statin medications meant that their previous efforts were wasted
Many participants in the study did not think that they would experience additional problems if they stopped using statins
Many participants did not think that discontinuing statin treatment would result in fewer symptoms or in a better quality of life
Many participants thought that they would spend less money if they discontinued their statin medications
Some participants believed that they might be able to stop taking other medications if they discontinued their statin medications
The majority of the participants disagreed with the statements that discontinuation of statin treatment meant that their doctor had given up on them, and that their doctor thought that they were about to die
Effect and adverse effects
Indication
Quality of life
Cost
Palagyi, 2016, Australia [23] The pitfalls of coordinated care:
Residents reported that they have continued taking medications after the condition for which they were prescribed had subsided
Strain on resources:
Shortage of registered nurses was a concern for family members of LTCF residents as it placed a high task-load on carers, giving the LTCF staff less time to observe the need for changes in or reviews of the medication
Medication knowledge among residents and relatives:
Most residents and relatives were aware of the number of medications they had to take every day, but had little to no knowledge of the indications for these medications, and there was minimal recognition of medication-related drug-events aside from the most common side effects, e.g. dry mouth and drowsiness. Those who had prior experience with medication-related incidents had wider knowledge of adverse drug events, including warfarin-related bleeding and dizziness
Whatever the GP says goes:
The apathy towards medication use displayed by LTCF residents is caused by their complete trust in decisions made by the GP. An overwhelming number of LTCF residents and relatives believed that the GPs medication management is not to be questioned
If it ain’t broke don’t fix it:
Although the big number of medications they have to take daily was a frequent complaint from residents, a number of residents expressed fear at the concept of reducing or ceasing some of their medications, believing that the medications are prolonging their life
- Healthcare professional cooperation
- Indication
- Knowledge of medication
- Medication burden
- Shortage of resources
- Trust in healthcare professionals
Turner, 2016, Australia [22] Residents Top 7 ranking:
(1) Well-being of resident
(2) Continuity of nursing staff
(3) Feeling of wellness due to medication
(4) Burden of medication administration
(5) Residents have the right to question their GP
(6) Voice of the resident is not heard
(7) Respect the GP and do as I’m told
Residents ranked “Well-being of resident” and “continuity of nursing staff” as the most important factors for deprescribing. “Well-being of resident” included the right to continue medications they believed made them feel well, and cease the medications they perceived contributed to ‘burden of medication administration’ or caused ADEs. Residents perceived good communication with health professionals as essential to achieve these factors
Residents also commented that unfamiliar nurses were unlikely to know of their medical, social and medication history and preferences, which could potentially lead to the residents’ voices not being heard which, in turn, is a barrier to deprescribing
Residents also prioritized the factor “burden of medication administration”, which included difficulties swallowing large tablets, taste of crushed medications, and use of devices such as inhalers, injections and eye drops. This was considered as a facilitator of deprescribing
Effect and adverse effects
Medication burden
Discussing deprescribing with healthcare professionals
Quality of life
Trust in healthcare professionals
Reeve, 2016, Australia [21] Enablers and barriers to the deprescribing process were identified within 6 themes
(1) Appropriateness of deprescribing
Enablers:
Why: Knowing why the medication was to be stopped and what benefits would come of it seemed to be an enabler for deprescribing. There seemed to be a need for understanding the reason for cessation of the medication
Lack of benefit or necessity: Believing that the medication was no longer beneficial nor necessary to end of life care was an enabler for deprescribing
Available alternative: Finding a better medication or lifestyle choice that would render the medication unnecessary was an enabler for deprescribing. However, participants acknowledged that was not always possible
Drug interactions: Concerns on whether a certain medication caused interactions may cause older adults to favour discontinuation of that medication
Barriers:
Long-term use: This was considered a barrier to deprescribing. There seemed to be a belief in the older adults and carers that taking medications for a long time meant that it was still appropriate
Lack of current harm: Older adults and carers were happy to continue the medication because of the lack of adverse effects and they seemed to have little concern for future harm, some citing the fact that there is not much future to consider, in the light of limited life expectancy
(2) Process
Discussing why the medication should be discontinued with healthcare professionals was an important factor when making a decision about deprescribing, according to the participants
Participants expected the GP to inform them what monitoring and follow-up initiatives were required after deprescribing
Knowing that withdrawal of medications was on trial-only basis seemed to increase participants’ willingness to medication cessation
Participants mentioned that medications should be weaned before cessation, that medications should be withdrawn one at a time and that a lack of cooperation between healthcare professionals is an issue that may hinder deprescribing
(3) Influences on willingness to have medications deprescribed
One carer reported that they thought the GP was unlikely to be the one recommending stopping a medication as they spent very little time with the care recipient in a residential aged care facility. The role of nurses and pharmacists was only mentioned briefly by participants and was limited only to giving recommendations to the GP
There were mixed opinions on whether or not family members and friends should be an influence in the decision on deprescribing or not. It was mentioned that it was important for all family members to be in agreement with medication withdrawal at end of life
(4) Fear as a barrier to having medications deprescribed
Participants mentioned factors like general and non-specific fear, fear of return of condition, concern about return of symptoms, missing future benefits and fear of adverse drug withdrawal reactions
(5) Dislike of medications
The inconvenience of administrating the medication to carer and care recipient was reported as an enabler for deprescribing. This was mentioned in the context of the overall conditions and goals of care
(6) Making decisions for others
An additional carer-only theme emerged in the analysis, although it was not interpreted as a barrier or enabler: making decisions for others. It included the subthemes of the dynamics of making decisions as a carer, in particular when the care recipient still had some remaining cognitive function, their level of involvement in making decisions with the doctors, and the difficulty in making decisions for others
Effect and adverse effects
Healthcare professional cooperation¨
Hope and future
Indication
Making decisions for others
Medication burden
Discussing deprescribing with healthcare professionals
Desire and willingness to reduce medications
Post, 2000, USA [24] Caregivers of individuals with moderate and advanced AD:
Some caregivers experienced that donepezil enhanced the patient’s cognitive and physical abilities, maintaining a normal lifestyle, whereas others stated it did not calm the agitations
One caregiver was frustrated that the doctor refused to continue medication, because of no effect within advanced cognitive decline
Some caregivers took the patients off donepezil, with or without the involvement of the doctor, because of side effects, futility, costs, or giving the patients confidence to do things they are not capable of to do safely
Despite seeing no improvement when the patients were taking donepezil or no change in the patients after medication cessation, some caregivers did not want to take the patients off the medication, if they did not experience any side effects
One patient died of a heart attack shortly after medication cessation and the caregiver felt guilty for stopping the treatment
One caregiver felt bad about not being able to help the patient, and a friend advised her to start the patient on the medication again, even though the doctor said it had no effect, because it could not hurt
Perception of or hope for improvement as well as seeing their relatives happy, telling jokes and laugh made caregivers want to keep the medication even without any effect
Caregivers made decisions regarding continuation and discontinuation of the medications without involving the doctor. Sometimes caregivers wanted to have a dialogue with the doctor about the medication, but refrained from that because the contact with the doctor usually took place through the nurse
Effect and adverse effects
Hope and future
Making decisions for others
Discussing deprescribing with healthcare professionals
Cost
Todd, 2016, UK [25] Medication forms part of daily routine
The majority of patients and carers specifically referred to medication when asked to describe what a normal day was like for them. Patients described organizing and taking medications and carers often referred to organizing and following-up on medication-related changes with the GP
The majority of patients lacked knowledge of the indications of their medication and what particular medication they took, as they placed complete trust in the healthcare professionals. The carers had a good understanding of the patients’ medication
Risk of medication
The majority of patients described experiencing adverse events from taking their medications, which appeared to be a significant part of the overall experience of using medications
Patients felt that the perceived risk and benefit of taking specific medications changed over time; at first patients find themselves in a state of anxiety until a specific point was reached. The patients described this point after having been diagnosed with life-limiting illness and appeared to occur after the patient was accepting of their disease. After this point, patients described some medications are perceived as more important to take than others. These values and beliefs were not consistent and varied between types of medication
Willingness to change medication
When it comes to willingness to change medication, many patients perceived medications as burdensome. Patients were not concerned with the type of medications they took, as much as being overwhelmed by the volume of it. This made patients and carers willing to discontinue medications
The carers welcomed deprescribing approaches if the risks and benefits were clearly explained and that it was done for the benefit of the patient. All of the participants had experiences with deprescribing
Patients described experiencing a mismatch of expectations between healthcare professional, patient and carer, when the prescribing doctor stated that this medication will be taken for the rest of their lives, and another doctor talked of deprescribing that same medication
Effect and adverse effects
Hope and future
Indication
Knowledge of medication
Medication burden
Discussing deprescribing with healthcare professionals
Trust in healthcare professionalsDesire and willingness to reduce medications

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Burghle, A., Lundby, C., Ryg, J. et al. Attitudes Towards Deprescribing Among Older Adults with Limited Life Expectancy and Their Relatives: A Systematic Review. Drugs Aging 37, 503–520 (2020). https://doi.org/10.1007/s40266-020-00774-x

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