Deprescribing for patients nearing end of life: views, barriers and facilitators of palliative care patients, carers and nurses

Abstract

Background

The deprescribing process, which aims to reduce or stop unnecessary medications, remains an area with limited research, especially in patients nearing end of life. Therefore, we aimed to explore the views, barriers and facilitators of patients, their carers and community palliative care nurses about deprescribing for patients nearing end of life.

Methods

This qualitative study was conducted in Hospis Malaysia, Kuala Lumpur, between September 2021 and August 2022. We recruited patients on ≥ 5 medications, their carers who were ≥ 18 years, and community palliative care nurses from Hospis Malaysia. Nurses were recruited because they conducted home visits, could identify patients who may benefit from deprescribing, and could initiate deprescribing following consultation with physicians. Individual in-depth interviews were conducted using a topic guide. Thematic analysis was used to analyse the transcribed interviews.

Results

Five patients, 9 carers and 11 community palliative care nurses participated. Three themes emerged: (1) use of medications at end of life (2) social influences affecting deprescribing and (3) factors influencing deprescribing. Deprescribing was regarded as essential. Deprescribing was favoured when medication risks outweighed benefits, when medication was financially unsustainable, when swallowing difficulties arose, or when simplifying medication regimens was desired. Conversely, fears of medical relapse and perceived loss of hope acted as barriers. Nurses demonstrated a strong understanding of deprescribing and could implement deprescribing due to robust organisational support. Their confidence was bolstered by consistent guidance from hospice physicians and timely information from pharmacy teams.

Conclusion

Deprescribing was deemed essential for patients nearing end of life by patients, carers, and community palliative care nurses. Future research should broaden its scope to encompass diverse healthcare systems and settings, examining how cultural and professional factors influence end-of-life care, thus offering a more comprehensive understanding of deprescribing in various contexts.

Supplementary Information

The online version contains supplementary material available at 10.1007/s00520-026-10522-3.

Background

Patients with life-limiting illnesses who are approaching end of life are still predisposed to polypharmacy (defined as being on 5 or more medications) [1–3], as they are simultaneously prescribed long-term preventive therapies for chronic diseases and symptom-directed treatments specific to end-of-life care [4, 5]. Consequently, the use of potentially inappropriate medications remains widespread in this population and often persists even in the final stages of life [6–11]. Deprescribing, the process of reducing or stopping medications [12], has become increasingly important for patients in palliative care. Early detection and discontinuation of potentially inappropriate medications, described as proactive deprescribing, can help prevent undesirable side effects, reduce the burden of medication, and potentially improve the quality of life [13]. Deprescribing (reactive) may also be prompted by specific triggers, such as adverse events that require stopping a medication [14]. However, there is still a lack of understanding and knowledge about medication management in palliative care and the process of deprescribing for patients nearing the end of life.

In Malaysia, individuals with life-limiting illnesses and nearing end of life are typically cared for by nurses from palliative care units in hospitals or in the community. These trained palliative nurses are overseen by palliative care physicians. They have a vital role at the forefront in conducting detailed assessments, which include identifying the existence of polypharmacy and its potential to cause adverse drug reactions or interactions. They also gauge the readiness of patients and their families for deprescribing. While the decision to deprescribe ultimately lies with the physicians (as Malaysian nurses hold non-prescribing roles), it is based on the assessments provided by the nurses. This model differs slightly from that in developed countries, where nurse practitioners have some prescribing roles [15, 16].

Research on deprescribing, predominantly conducted in developed countries, highlighted the role of nurses in directly assessing patients' needs and preferences to align with their overall well-being. This includes medication management, where assessments are carried out to determine the necessity of starting or stopping medications, with a specific focus on potential benefits, risks, and adverse reactions. However, there is a lack of literature on the viewpoints of nurses in Malaysia who hold non-prescribing positions, specifically to deprescribing for patients nearing end of life. Gathering this information is crucial to strengthening nurses' deprescribing strategies in the context of caring for patients with life-limiting illnesses and approaching end of life. Understanding nurses' experiences and challenges related to deprescribing can provide valuable insights for developing educational programs, allocating resources, and potentially influencing healthcare policies to better support this critical practice in Malaysia's palliative care system.

Hence, this study aimed to gain insight into the perspectives of patients, their carers and community palliative care nurses, about deprescribing for patients nearing end of life, and to identify the factors that could encourage or impede the process of deprescribing.

Methods

Study design and setting

This qualitative study was conducted from September 2021 until August 2022. All participants were recruited from Hospis Malaysia, a charitable organisation providing professional community palliative care to those with life-limiting illnesses [cancer, acquired immune deficiency syndrome (AIDS), organ failure or progressive neurological conditions] [17]. The home care programme, is the fundamental activity of Hospis Malaysia [18]. The clinical team comprises nurses, physicians, pharmacists and an occupational therapist. It is a nurse-led service, with nurses primarily responsible for assessing and following up with patients. Management of symptoms is discussed and planned with physicians. Physicians carry the responsibility for prescribing. However, nurses are at the forefront of identifying polypharmacy and assessing patients' and carers’ understanding of and attitude towards medication use, as well as their treatment adherence and preference. The consolidated criteria for reporting qualitative research (COREQ-32) was used to report important aspects of the research team, study methods, context of the study, findings, analysis and interpretations (Additional File 1).

Participants

Patients

Palliative care patients who were more than 18 years of age, prescribed with five or more medications, able to take and swallow their medications, and could understand and speak in English or Malay were included. Palliative care patients who were cognitively impaired (had delirium and/or dementia) or who were in the active phase of dying were excluded.

Given the lack of a universal consensus on the definition of polypharmacy, we kept the definition of polypharmacy as the concurrent use of five or more regular medications, including both preventive and symptom-control medicines. This definition was chosen to allow a comprehensive exploration of patients’ experiences and views regarding their entire medication regimen and deprescribing at the end of life, rather than limiting the focus to preventive therapies alone.

Carers

Carers are defined as “individuals (adult children, spouses, parents, friends, or neighbours) who provide care that is typically uncompensated and usually at home, involves significant amounts of time and energy for months or years, and requires the performance of tasks that may be physically, emotionally, socially, or financially demanding.” [19]. Carers over 18 years of age, actively caring for patients as defined above and able to speak in English or Malay were included. Interviews with carers were conducted at a venue of their preferences (home or at another location of their choice).

Palliative care nurses

The specific model of care at Hospis Malaysia places palliative care nurses, in the forefront of delivering home-based care. In Malaysia, nurses do not have a prescribing role. However, they are still tasked with conducting thorough assessments of patients' needs, identifying when adjustments to therapies are necessary, and closely monitoring patients' responses to ensure comfort and quality of life as they near the end of life. Physicians at Hospis Malaysia make decisions based on earlier assessments conducted by nurses. Hence, community palliative care nurses, who regularly conduct home visits to assess, and monitor outcomes of patients nearing end of life and who could speak English or Malay were invited to participate in this study. Interviews were conducted at Hospis Malaysia.

Palliative care physicians and pharmacists were excluded as there are only four physicians at Hospis Malaysia; one working in an administrative capacity and another being the academic supervisor of this project. Furthermore, there was only one pharmacist employed during the study period, who was the researcher involved in the study.

Procedure

The study employed a convenience sampling approach to recruit patients and carers, purposively drawing on individuals who were accessible through community palliative care nurses and who met the study’s inclusion and exclusion criteria. This strategy was chosen to capture a specific set of experiences directly relevant to the research questions (i.e., experiences of palliative care patients and their carers) while operating within the organisational constraints in place at the time.

Patients

Potential patients were identified by community palliative care nurses. This approach was in accordance with Hospis Malaysia organisational policies which disallowed any individual, whether internal or external to the organisation, from directly contacting patients and their families, unless it was related to the routine and essential activities specified by the organisation. In addition, nurses possessed the most up-to-date knowledge about the patient's health condition, specifically on their suitability for interviews.

Nurses were given a comprehensive explanation of the specific criteria for inclusion or exclusion by the researcher. Verbal consent was obtained from patients who met the inclusion criteria, and potential patients were given a copy of the participant information sheet before being contacted by the researcher.

Carers

Similarly, carers who fit the inclusion criteria were identified by community palliative care nurses. Verbal consent was obtained from carers who met the inclusion criteria, and potential carers were provided a participant information sheet before being contacted by the researcher.

Palliative care nurses

All nurses employed with Hospis Malaysia at the time of the study (n = 13) were invited to participate. This universal sampling approach aimed to capture the full range of perspectives and experiences within the organisation to provide a comprehensive understanding of the research topic.

Theoretical framework

The Theory of Planned Behaviour (TPB) [20] was chosen as the framework to inform the design of the topic guide, data collection, and outcomes of this study. This theory was selected for understanding and promoting health-related behavioural changes in many contexts [21, 22], and its applicability in interventions and its capacity to predict a wide range of health behaviours have been demonstrated in a meta-analysis study [23]. The TPB proposes that cognitive processes can be categorised into three beliefs: behavioural, normative, and control. Additionally, there are broader domains such as attitude towards the behaviour, subjective norm, or motivation to comply, and self-efficacy or perceived behavioural control, which can impact the execution of a specific behaviour, regardless of intentions (Fig. 1).

Fig. 1.

Theory of planned behaviour (TPB) for deprescribing. (Adapted from (Ajzen, 1985) [20])

Data collection

Data was collected through in-depth interviews (IDIs). IDIs were chosen for all groups of participants (nurses, patients and carers) as it allowed participants to articulate their experiences in detail and provide their critical views that they may not necessarily reveal in the presence of others. A semi-structured interview guide informed all interviews. The guide was derived from key constructs identified in the literature and the theoretical framework [20, 24, 25]. Slightly different versions were used for patients, carers, and nurses to reflect group-specific roles and experiences; core questions were consistent across groups to allow comparative analysis. The guides are provided in Additional File 2.

Patients and carers

The researcher contacted patients and carers (first calls) to confirm their willingness to participate, within 2 days after being notified of potential participants by nurses. If participants (patients and/or carers) required further time to decide, they were provided another 2–7 days to read the participant information sheet. A second phone contact was made to confirm their desire to participate. The researcher then arranged a meeting, specifying the date and time, for those who agreed. Before performing the interview, the participants were provided with the written informed consent.

Nurses

Community palliative care nurses were invited to a briefing session by the researcher at Hospis Malaysia (Fig. 2). Participants were handed the participant information sheet during the briefing, and nurses were given 7–14 days to read and understand the purpose of the research. Subsequently, the researcher approached each nurse individually to inquire about their willingness to participate. Participants who accepted were scheduled in advance for a face-to-face interview to minimise disruptions to their professional and personal hours.

Fig. 2.

Recruitment process

Data saturation was confirmed for patients, carers, and community palliative care nurses after the third, sixth, and ninth interviews, respectively. To ensure comprehensive coverage, additional participants were recruited for each group (two patients, three carers, and two nurses). Notably, three scheduled patient interviews were cancelled due to rapid clinical deterioration. Pandemic restrictions and participant caution necessitated a year-long data collection phase, during which rigorous safety protocols facilitated in-person interviews.

Data analysis

All interviews were transcribed verbatim. AHC transcribed independently the first, tenth and eleventh interviews from community palliative care nurses. The remaining interviews were outsourced to employed research assistants for this study, and the completed transcripts were checked by AHC to ensure no misprint and errors in transcribing. Thematic analysis, as outlined by [26] was used in this study to identify, analyse, review and report the themes derived from the collected data. AHC familiarised herself with the series of collected data, reviewed each transcript, refined the initial codes into codebook by using NVivo® R1 2020 Version 1.7.1 (QSR International Pty Ltd.). The initial coding was subsequently checked and reviewed with PSML and SM, through multiple discussions using the TPB framework.

Research rigour

Reflective journaling and field notes were kept by AHC throughout the interview process. All interviews were audio-recorded. Participants were informed that once the transcriptions were ready, they would be returned to them, respectively, for checking and feedback.

The research team comprised three individuals, including two pharmacists (AHC and PSML) and a palliative care physician (SM). AHC completed training on qualitative research methodology, including instruction on NVivo for data analysis. AHC is a pharmacist focusing on palliative care and has over 16 years of experience in community palliative care. She collaborates closely with a clinical team of palliative care physicians, nurses, pharmacists, physiotherapists, and an occupational therapist. AHC acknowledges that in the context of individuals with life-limiting illnesses, particularly at the advanced stage of their illness, the use of several medications is linked to increased load, complexity, and consequently, a negative impact on their quality of life. PSML is a pharmacist employed in the field of academia. Prior to her shift into academia, she held the position of a hospital pharmacist for a duration of 20 years. PSML is a seasoned researcher in qualitative studies and has written multiple articles on qualitative research. Moreover, she holds the belief that discontinuing medications for patients nearing the end of their lives will alleviate the burden of medication for both the patient and their carer. SM is an experienced palliative care physician who has been practicing in community palliative care for over two decades. SM also promotes patient-centered approach and believes that deprescribing should be undertaken when there are clear advantages for patients and their families.

Results

Five out of 8 patients (response rate = 63%), 9 out of 10 carers (response rate = 90%) and 11 out of 13 nurses (response rate = 85%) participated. Patients’, carers’ and nurses’ age ranged from 45 to 80 years, 24 to 68 years and 31 to 53 years, respectively. All carers interviewed were living with the patient. The experience of working as a community palliative care nurse ranged from 2 to 15 years. (Table 1).

Table 1.

Demographic characteristics of participants

Patients				Carers				Nurses
ID	Age (years)	Gender	Living with carer/family member?	ID	Age (years)	Gender	Relationship to patient	ID	Gender	Years of experience as a community palliative care nurse
P01	62	Male	Yes	C01	54	Female	Daughter	N01	Female	3
P02	67	Male	Yes	C02	60	Female	Daughter	N02	Female	15
P03	62	Female	Yes	C03	24	Female	Granddaughter	N03	Female	13
P04	45	Female	Yes	C04	28	Male	Son	N04	Female	7
P05	80	Female	No	C05	34	Female	Daughter	N05	Female	2
				C06	68	Female	Daughter	N06	Female	9
				C07	65	Female	Wife	N07	Female	3
				C08	53	Male	Son	N08	Female	4
				C09	36	Male	Son	N09	Female	8
								N10	Female	15
								N11	Female	6

Three themes emerged from the data: (1) use of medications at end of life (2) social influences affecting deprescribing and (3) factors influencing deprescribing (Fig. 3).

Fig. 3.

Main themes and subthemes that emerged

Use of medications at end of life

Deprescribing: when benefits outweighed the risks

Participants were aware of the burden associated with the use of medications at the end of life and its consequential effects on patient functioning and overall well-being. They believed deprescribing should occur proactively when appropriate, especially when the benefits outweighed the risks. For instance, for patients with deteriorating health, medications like oral hypoglycaemic agents (OHAs) or insulin injections can sometimes increase the risk of hypoglycaemia, especially when their appetite decreases. In these situations, nurses prioritised educating patients about the potential benefits of deprescribing. By discussing their recent eating patterns, any episodes of feeling unwell, and their blood sugar readings, nurses aimed to empower patients and/or carers with knowledge to understand the risks about continuing on OHAs/insulin and make informed decisions about their treatment plan.

“When a patient deteriorates, their oral intake is low. So, they (patient) have a risk of (experiencing) hypoglycaemia instead of hyperglycaemia. So, I will ask the patient how well they have been eating and assess whether their OHAs (oral hypoglycaemic agents) or insulin is still required. So, by deprescribing these medications … would bring benefit … not harm.” N07

Most nurses were aware that there was always a certain level of risk associated with withholding certain medications, such as blood thinners for stroke patients. Hence, it was of utmost importance for them to thoroughly consider the potential risks and advantages of deprescribing and engage in honest discussions with the patient and their family regarding their care objectives.

“I mean, there's always a risk …, like, especially someone with let's say, … for example, stroke, and we stop his (blood thinner medications), because there was an episode of bleeding. There's always risk of another stroke as well. So, I think it's to weigh the risks and benefits and also to discuss the goals of care with the … patient and the(ir) family …, on what's important.” N11

Deprescribing: when reducing the pill burden becomes necessary

(a) When swallowing becomes difficult

For patients nearing the end of life, swallowing difficulties frequently hinder their ability to take medications, including vitamins. Yet, they are still expected to take medications that no longer serve a purpose. This places an unnecessary burden on the patient, as swallowing becomes difficult and the medication itself suppresses their already diminished appetite. As a result, this would encourage the participants, particularly, the nurses to initiate the discussion of deprescribing (reactive).

• “(When) patient … is in the dying phase, (it) will be very difficult to swallow certain type of food including medications. … So, we need to see whether is it required for (them to take) (those) vitamins (and medications). … The benefits … (are) quite weak compared to the burden they need to swallow the medications.” N01

• “Err, another burden, I would say is … the person is deteriorating, and … difficult to even take orally like food, and he (must) depend on all these medicines, which doesn't give any benefit. It was a burden (to) the patient, and the appetite will just go off by just having those medication itself.” N11

(b) When simplifying medication administration alleviates carer burden

Carers expressed their preference for a reduced medication regimen. They believed that taking too much medication was not beneficial for someone of advanced age, with low energy levels. The current schedule was seen as burdensome and disruptive to the daily routine. Carers reported difficulties involved in adhering to the medication schedule, including waking up early, preparing small meals beforehand, and the overall time-consuming nature of the process.

• “Lesser is better … because … he is already … at 74 or 75 this year and … taking too much medicine I don’t think it’s very good sign … for him. … you can see my dad he just feels very tired and just sleep whole day like this. He (must) wakes up in the morning at 8 and then … 4 pm and then 12am … the schedule is like very tough for him. … he has to wake (up) at 7.30 because he needs to brush teeth and … I need to prepare something for him to take …and all the … step by step.” C05

• “Some family, … let's say the patient is (using) ryles tube feeding, and some medication has to be given on a certain time, …cannot be crushed, and … it is (an) elderly carer, …it can be quite difficult for them to do …, especially (when there are) 14–15 drugs that he needs to take.” N11

Nurses believed that deprescribing could offer relief to both patients and their families, by reducing unnecessary medications. It alleviates the guilt patients might feel for not taking everything prescribed, and simultaneously lowers the anxiety carers often experience regarding ensuring medication adherence.

“It is a kind of relief (for everyone – patient, carer) … because they (patient) will not have the guilt … for not taking (the medication) … and … reduce family’s anxiety … on their responsibility to ensure (the) patient takes the medication.” N06

Deprescribing: when medications become unaffordable

Medication access can be a significant obstacle, especially for patients discharged from private healthcare, and purchasing certain prescribed medications can be financially challenging. When medications become unaffordable, patients tend to omit doses, discontinuing therapy, which could lead to suboptimal treatment outcomes. Participants believed that deprescribing was a viable solution to identify medications that were no longer beneficial or could be substituted with more affordable alternatives.

• “… the medication (is) difficult to be supplied. For example, (when) it is supplied (by) private hospital and financially patient (is) not able to purchase it.” N01

• “… I think cost. Some patients … they got their (medications) from private hospitals and they have to buy with their own money or from … insurance (that) is no longer covering. And so, this patient is having pain and previously, … they were prescribed with morphine tablets, liquid. And now, … they can't afford it, and the supply becomes an issue. … They (are) still having the pain, and we need to manage that.” N05

Deprescribing concerns: a relapse of medical condition

Patients and carers raised concerns regarding the relapse of a medical condition when deprescribing occurs. One example cited by participants was the risk of discontinuing insulin for an individual with diabetes. Some patients also believed that deprescribing certain oral hypoglycaemic agents would cause adverse effects such as fatigue and weakness.

• “I think it might be harmful because we take medicine to heal, right? That's why … to stop insulin (when she is) always has high sugar … it can be harmful (and) gets worse (on her) diabetes. So, I'm worried.” C03

• “But, let’s say if stopping (medicine) has an impact, where we are always tired, weak, and all, right, then, it’s better to continue the medicine.” P03

Deprescribing concerns: loss of hope

All participants acknowledged the emotional investment of the patients and their carers, particularly when they viewed medications as a lifeline or a source of comfort. The idea of stopping medications could evoke feelings of anxiety, loss of hope and uncertainty. Moreover, nurses were aware of the psychological impact medications had on patients, that patients and carers could experience heightened anxiety if the reasons for deprescribing were not clearly communicated.

• “And ahh, I remember (they have said) that this (taking medication) is the only hope. So, they don't want to just like (let it) go.” N04

• “I feel a bit anxious when the amount of medications (were) reduced overall because I feel like … we don't have the effort to help her.” C03

• "My life depends on this medicine … I can't do surgery, … and so I will have to rely on medication for the rest of my life.” P03

“Patient, …, psychologically, will think that, … (when) they are stopping (the) medication, (then) maybe (their) condition is not good or deteriorating, or things are not going on well. So (there) could be a psychological impact, … especially for patient who's been taking it for many years.” N03

Deprescribing: a careful process with trial periods, communication and monitoring

While some patients and carers showed passivity towards deprescribing, they were often open to exploring a trial period to assess its impact on their health and well-being. This approach allowed them to observe firsthand whether their medical condition would relapse or would remain stable without the medications.

• “There must be a reason (for deprescribing). And even though I say yes, there must be a trial period … (I) want to see the reaction.” P01

• “As a family member we would be more concerned about the result. (When) there has been a reduction in medicines – we will monitor at least (for) a month.” C04

When it comes to decisions about deprescribing, patients and carers wanted open lines of communication and transparency. They stressed how crucial it was to comprehend the reasoning behind these choices and the potential implications and anticipated results. They also emphasised the importance of patients and carers becoming knowledgeable participants in their healthcare journey and advocating for open dialogue and collaboration with healthcare providers, aligned with patient-centred approach to deprescribing.

• “Before you stop (the medicine) I will ask, why. There must be a reason to stop. Then, (the) second question is what will be the consequences. If I feel it is right, then I will follow.” P01

• “If you come to a terminal stage where medication they give you is not going to help, the doctor (will) tell you this. If they stop it, I'll ask them reason why. If they were to explain to me, … I would accept it.” P05

• “We are common, lay people, and we don’t know much. (But) I personally feel we should be informed of what we are taking.” C02

The deprescribing process could be initiated once the assessment and discussion have been established with patients and families. Nurses believed that the assessment and identification of medications was an essential component of their duties. During patient follow-ups, they performed a medication review to determine whether or not each one was still required.

• “Medication (is) also one of our responsib(ility) to check. And (when) follow(ing) up patient…, I (would look at) all the medication that (are) still ongoing and the needs of (those) medication.” N01

• “We have to assess whether there is any indication to continue or not? So, I think deprescribing medications is really important. Otherwise, it can cause more harm … (than) … good.” N09

• “I'll ask the patient how they feel … about taking a lot of medication, their appetite and well-being. I’ll need to know that first before we (can) decide to withdraw the medication.” N08

• “After going through the medication, then … we (will) have a discussion with patient, … (about) his (or her) understanding … on each medicine, (the purpose, comfortability, any issues) … while taking all these medicines.” N11

Additionally, nurses highlighted the importance of providing assistance to patients subsequent to deprescribing, overseeing their well-being, conducting thorough assessments and monitoring for potential ramifications.

“The other thing that is important is to provide them (patient and carer) (with) continuous support. After we (have) stopped (the medicine), we … need to … get back to them. … Is … the person (patient) comfortable, or does he have any complications? And how does the family feel …, because they are the ones with the patient all the time. So … it is … important … to look for and to look after.” N06

Social influences affecting deprescribing

Carer’s influence on deprescribing

Carers play a crucial role in providing medication to individuals with life-limiting conditions, especially for those caring for patients near the end of their lives. The ability to adhere to treatment plans and achieve desired outcomes hinges on the cooperation of carers. Nurses have pointed out the potential for conflict when a carer insists on continuing a medication even if the patient cannot tolerate it. They have emphasised the importance of healthcare providers being aware of the emotional impact of stopping medications on both patients and their carers, and they recommend frequent follow-up and support to help them adjust.

• “Family member wants to continue (the) medication even though (the) patient (is) unable to tolerate. Their mindset… is that this medication needs to be taken because that’s (how) the information given…from the beginning. So when the patient is unable to take the medication, there is a dilemma (for) the carer.” N01

• “It is a very important point too, to check on how the family would feel and what do they observe … after we have stopped the medication. (With this and) the frequent contact will help them (patients and families)… (to be able to) cope better after that.” N06

Some carers however, recognised the importance of working together with healthcare providers to ensure the best outcomes for the patient. They shared observations and concerns and were actively involved in the care process to ensure the ongoing safety and effectiveness of medications. They had a careful strategy for managing medications and were prepared to stop using a medication if any concerns arose.

“For me, it (medication) brings benefit. Ah and … Any new medicine, I will know … (and) often look at the medicines’ list. … I will ask why for this, (and) for what. For example, the normal high blood pressure medication is 5 mg. (And when) suddenly it goes up to 7.5, then, I (will) ask (for explanation). … If it's not okay, I will stop the medicine.” C09

Nurse’s role in deprescribing

Nurses contributed significantly to the successful implementation of the deprescribing process. A carer succinctly described the nurses' prompt and effective response in acknowledging and addressing medication burdens, which played a critical role in achieving the desired outcome.

"The nurse heard (about) my dad… had a fall and dizzy. Then she quickly does the tests for my dad… sugar level and… blood pressure. She (gave) me the answer… and result… to stop these (medicines)… because of… (the effects). So, her advice is very important (to) us." C05

Nevertheless, the nurses expressed apprehensions over the impact of deprescribing on their relationship with patients and their families, fearing that it would be interpreted as a lack of empathy.

“(Taking medicines) … it is like a hope for them (patient), you know, … so if … we take it out (of the) picture (deprescribing), I feel … it will impact my rapport with them (patient) … and it could also make them (patient) think that maybe I am not so caring.” N05

Factors influencing deprescribing

Shared decision-making in deprescribing

Participants emphasised the significance of clarity in providing information and shared decision-making in deprescribing. When differing opinions or concerns arise regarding deprescribing, it is crucial to initiate an open conversation to understand the perspectives of everyone involved. This includes addressing the patient's current condition, their individual needs, and the rationale behind deprescribing certain medications.

• “There are different voices and queries about stopping medications. … And to understand their concerns, (it is) important. (Letting) everyone … understand what's (the) patient's condition, now, (their) needs, and why the medication is not needed in (this) situation. So, again, communication is important, and giving them (the) information, … and (explaining).” N10

• “The patient must give the proper feedback to the doctor in order for the doctor to give assessment.” C01

• “Giving them a chance to ask questions, understand their concerns and with good information and explanation, … will ensure … (the) patient is using the right essential medication, with support from family.” N10

• “I will ask, yes. If the doctors were to tell me, … I would accept it.” P05

Confidence to deprescribe

Nurses expressed a sense of empowerment in their ability to carry out the evaluation process for deprescribing, offering comments and suggestions. This sense of empowerment stems from their consistent support and validation from hospice physicians regarding the suitability of medication cessation.

• “It’s like when I see a patient taking medication that causes a lot of burden and distress, … I will then ask whether there is still … benefit to take. Then, I will take a step to review the medication with the doctor.” N02

• “(When the) patient’s condition (is) deteriorating, …I will pick up (and see) if there’re still roles and benefits to continue the medication. When I can suggest to stop it (the medication), then I will discuss with the doctor … always will discuss with the doctor.” N02

• “(When) I'm doing the deprescribing (of) medication, I have the whole team (to) back me up. So I will always consult the doctor first before asking them (patient or family member) to stop. It's not my own judgment… and I feel very safe.” N06

Nurses identified themselves as the key person in assessing patients’ well-being, including the management of medicines and the essentialness of continuous administration. They expressed confidence in their ability to carry out the processes required to deprescribe.

• “I am confident in giving (that) information (deprescribing) unless (there) is a new medication, I'm not familiar with. (And then) I will (usually) excuse myself in getting more information and get back to the patient and family after…” N10

• “I am quite comfortable (with deprescribing). But if … I'm not sure about (a) certain medication, I will call my pharmacists … to … clarify, about what's the indication of the medication, (and) then it (would be) easier for me to … discuss with the family.” N011

• “Based on their (patient) condition at home, I'm confident, either to stop or not. … The doctors will (usually) ask us (anyway), because we are the one that seeing, visiting, assessing the patient. For me, I am comfortable to stop.” N08

Nurses also believed that the pharmacy team's prompt delivery of information had facilitated the decision-making process about deprescribing.

• “I will always get more information from the pharmacists. I think (their) input really help me to (be) more confident to do it (deprescribing).” N06

• “I would just straight away go to my pharmacists. They are available at any time, (which) means that I can call them (while conducting) the home visit or during the (daily) morning reporting.” N01

Nurses believed that the quality of patient-provider relationships has a significant role in shaping patient’s perspectives on deprescribing. Nurses stated that although they possess the knowledge and expertise in deprescribing, implementing it is challenging due to the prevailing perception of nurses as non-prescribers.

• “(When) the primary doctor is very close to the patient, and the patient doesn't want to

• stop the medication because afraid… it may cause… frictions with the primary doctor. So (when)… we stop certain medication, I think that some(times)… is more challenging…” N11

Nurses possessed an understanding of the value of the prescribing physician's expertise and the family's contribution to medication management. However, they also recognised the limitations of their own role. Certain medications, particularly those employed in cancer treatment, demand specialised knowledge for dose adjustments or cessation. When confronted with such scenarios, nurses prioritised patient education on the benefits and potential drawbacks of these medications, along with recommending consultation with the oncologist for further evaluation. While the nurses lacked the authority to make decisions concerning the deprescribing of specialised medications, their function in monitoring patients during visits, recording medication-induced adverse effects or complications, and relaying these observations to the healthcare team is of paramount importance.

“The doctor who prescribes is very important and … family members. … But certain medication like cancer treatment medication, we are not going to like say, stop. What we can do is to discuss with patient the benefits and … the side effects … he is experiencing now, (and) possibl(y) can be reviewed with the oncologists. … We are … not in a position to (do) deprescribing. … But during the visit, we can take note or … pick up the difficulty or distress, patient is having from the medication.” N07

Discussion

The study illustrated the collective perspectives of patients, carers and community palliative care nurses regarding medication use and deprescribing approaches at the end of life. Thematic saturation was achieved independently for each participant group (patients, carers, and nurses), ensuring a comprehensive exploration of themes across all perspectives. While nurses provided more detailed accounts of clinical processes, patient and carer interviews provided equal depth regarding lived experience and decision-making preferences. Three themes emerged from this study: (1) use of medications at end of life, (2) social influences affecting deprescribing and (3) factors influencing deprescribing.

Themes

The participants had a clear understanding of the potential burdens associated with medication use towards the end of life. They supported the practice of proactive deprescribing in situations where the potential risks of medications outweighed their benefits. This was especially important when certain medications like antidiabetics, anticoagulants and antihypertensives could worsen existing health conditions or cause more harm than good. This approach was in line with the principle of minimising harm and maximising patient comfort, as stated by [14, 27]. Nevertheless, the process of deprescribing is not always straightforward. Nurses were aware of the inherent risks involved in stopping specific medications, such as anticoagulants for individuals who had experienced a stroke. They understood the importance of evaluating the benefits and risks of medication use, similar to physicians who typically oversee the decision-making process for both prescribing and deprescribing in this context [28]. Similarly, nurses emphasised the significance of careful consideration, transparent communication with patients and families, and a comprehensive assessment of individual care goals before deprescribing could be initiated [12]. Some patients and carers expressed concerns about potential reactions and the fear of disease relapse when discontinuing medications. The worries regarding the cessation of medications, such as insulin therapy for diabetes, highlighted the significant impact of the potential consequences towards deprescribing for patients with life-limiting illnesses. [29] also identified that fear of disease relapse was a contributing factor to the reluctance of older adults and their carers to initiate deprescribing.

Similarly to [30], the daily management of medication and the involvement of carers were crucial for patients with life-limiting illnesses approaching the end of life. As the palliative phase progresses, swallowing issues are commonly reported, affecting up to 79% of patients [31]. Deprescribing is required when medication administration becomes increasingly difficult and inconvenient. The development of swallowing difficulties towards the end of life can lead to various complications such as aspiration pneumonia, dehydration, malnutrition, high incidences of choking, increased carer burden, and more, necessitating deprescribing [31]. In addition, managing medication can become more mentally demanding and complex for carers, which may present an opportunity for deprescribing.

The administration of preventative medications to patients with life-limiting illnesses can have significant psychological and financial implications, especially in cases where uninsured patients managing their healthcare through out-of-pocket expenses see pharmaceutical costs as a heavy financial burden [6]. Additionally, there is an increased risk of polypharmacy, which may result in adverse outcomes. Patients unable to afford their medications were often faced with the difficult choice between buying their medications and meeting other basic needs. According to [32], patients struggling to afford medical care may skip doses or completely stop taking their prescribed medications. Similarly, when participants in the study encountered financial difficulties, deprescribing was considered a potential solution.

The study participants raised concerns about experiencing anxiety, uncertainty, and a sense of hopelessness when deprescribing occurred without sufficient explanation and communication. This underlined the need for healthcare providers to redefine the narrative around medication use in end-of-life care to counter the perception of deprescribing as a loss of hope. Although the psychological impact of stopping medications and treatments is not extensively studied, a growing body of literature supported the notion that deprescribing exacerbates many patient fears, such as the belief that clinicians are giving up [33, 34]. Deprescribing should be reframed as a strategy to prioritise comfort, symptom management, and improve quality of life, rather than exclusively focusing on curative interventions. This approach can help patients and carers recognise that deprescribing does not signify an end to care, but rather a shift towards enhancing quality of life and reducing potential harm [27].

Patients and carers were receptive to the idea of deprescribing to explore potential benefits, while maintaining a sense of control over their healthcare decisions, which was similar to previous studies [29, 35]. It was stressed that healthcare providers should have open discussions and be transparent, provide clear explanations for deprescribing decisions, potential risks and benefits, and expected outcomes. This approach would then empower patients and their carers to make informed choices and alleviate anxieties related to medication changes.

The study highlighted the significant influence that carers have in the process of deprescribing for individuals with life-limiting illnesses. Carers are pivotal in ensuring the safe and appropriate use of medications by patients with life-limiting illnesses, but their perspectives and concerns may sometimes differ from healthcare providers' recommendations, particularly in end-of-life care. The potential for conflict between carers and healthcare providers becomes evident when carers insist on continuing medications despite patients not tolerating the medication or reluctance to take medication, emphasising the emotional complexities surrounding end-of-life care. Carers may experience feelings of guilt, helplessness, or fear of losing control when considering deprescribing for their loved one's well-being. This sentiment was also echoed in another study by [36], where carers or relatives found that making decisions for others was a significant factor in considering deprescribing. When faced with the responsibility of making decisions for older adults with limited life expectancy, carers felt frustrated as they could not provide the help they wished to. They were also worried about feeling guilty if something went wrong after a decision was made by them. Successful deprescribing calls for active participation of carers to share observations and concerns, and to actively engage in the decision-making process. These findings were consistent with [37], emphasised the weight of carer involvement in medication management, especially in end-of-life care.

The study highlighted that nurses were central figures for the deprescribing for patients nearing the end of life. In the Malaysian context, nurses caring for these patients, especially within the community setting, assume significant responsibilities despite their non-prescribing status. Their duties often mirror those of a general physician, encompassing a wide range of palliative care skills as patients approach the end of their lives. Nurses advocated transparency, patient empowerment, and collaborative decision-making alongside physicians and pharmacists. They understood the importance to provide clear information, to practice shared decision-making, and to address differing opinions and concerns regarding deprescribing. Nurses also recognised the necessity of creating an environment where patients, carers, and healthcare providers can openly discuss the patient's current condition, individual needs, and the rationale behind deprescribing certain medications. The principles of patient-centred care, as echoed by [38], emphasised the importance of respecting patient autonomy and involving them in their healthcare decisions.

Nurses played a vital role in evaluating the overall health and medication needs of patients. They initiated and led conversations about medication reduction, and oversaw the process of deprescribing, whilst ensuring patient safety and well-being. Through thorough reviews of medication, assessing each patient's specific needs, and providing continual support and supervision, nurses played a crucial part in facilitating a seamless transition to a deprescribed medication regimen and addressing any issues or complications that may arise. This is in line with the notion of the supportive role of nurses in proactive deprescribing, which emphasises their distinct skills and knowledge in managing medications and educating patients and carers [39].

The nurses had confidence in their ability to evaluate and initiate deprescribing discussions. Their confidence in their knowledge and skills, combined with their access to information from pharmacists, allowed them to make informed recommendations and engage in meaningful discussions with patients and families. This confidence also derived from the consistent support and validation provided by hospice physicians, reinforcing the importance of interprofessional collaboration and communication in optimising medication regimens [40]. The findings also suggested that when nurses feel empowered to assess medication appropriateness and propose changes, they were more likely to advocate deprescribing and initiate conversations with patients and carers.

However, the study also revealed challenges in implementing deprescribing, particularly when it comes to specialised medications like those used in cancer treatment. Nurses recognised their limitations in adjusting or discontinuing such medications and prioritised patient education and consultation with specialists. This highlighted the need for continued interprofessional collaboration and communication to ensure safe and effective deprescribing practices [40].

Limitations

Amidst the COVID-19 pandemic, the process of recruiting patients and carers was halted because of their hesitations and limitations with conducting interviews online. They required more experience with video interviews, access to technology tools for conducting them, and encountered challenges in obtaining reliable internet connections. Face-to-face interviews were only reinstated in September 2021, coinciding with the easing of pandemic restrictions.

Furthermore, a significant proportion of the patients were in advanced stages of their condition. Consequently, some participants encountered clinical discomfort that impeded their participation, although having previously agreed to participate. Meanwhile, others experienced rapid disease progression and succumbed before data collection could be completed. This imposed a constraint on the number of patients that could be interviewed. Nevertheless, interviews with patients were continued until thematic saturation was achieved.

Recruitment of patients and carers for this study was done by the nurse. Accessing patients and carers through gatekeepers (nurses), while abiding and adhering to research site policies, posed practical challenges in ensuring a wide range of viewpoints, as less motivated patients and carers might have held contrasting views on deprescribing compared to those selected [41]. A considerable amount of time elapsed between the nurse's initial contact with the patient and/or carer, obtaining consent, and informing the researcher and the actual interview date. As a result, some participants experienced symptomatic discomfort or experienced rapid disease progression and could not be interviewed. Furthermore, the primary researcher's dual role as researcher and pharmacist, coupled with prior relationships with nurse participants, could have inadvertently introduced social desirability or social acceptability bias, potentially influencing participant responses in an attempt to gain approval. The experiences of participants in the community palliative care program likely had a significant impact on their perceptions and attitudes. This influence can be attributed to the educational opportunities offered by the program, along with the continuous interactions and support from the community palliative care team. In this context, it is essential to acknowledge that patients and carers without access to community palliative care services may have substantially different experiences and perspectives.

The exclusion of palliative care physicians and pharmacists, necessitated by their limited numbers and specific organisational roles during the study period, represents a methodological limitation. This omission refrained the study's capacity to obtain comprehensive insight into final prescribing authority, the clinical rationale for deprescribing decisions, and the collaboration between professionals in medication management.

Strengths

This study offered a comprehensive understanding of deprescribing by incorporating the perspectives of patients, carers, and nurses, thereby enhanced the credibility and validity of the findings. The use of a semi-structured qualitative methodology was fitting as it allowed for a thorough exploration of the experiences, beliefs, and attitudes related to deprescribing. Furthermore, the study's in-depth examination of the specific circumstances surrounding end-of-life care recognised the particular challenges and intrinsic factors at this stage, amplified the significance and practicality of the results. Despite the drawbacks of recruiting participants through invitation, this approach facilitated in-depth and insightful interviews with motivated individuals, and it had enriched the understanding of the topic in a more detailed and nuanced manner.

Implications for practice

This study puts forward several recommendations to enhance the quality of end-of-life care. A primary recommendation is the implementation of continuing medical education (CME) programs tailored for palliative care nurses. These programs are designed to improve nurses' knowledge and understanding of deprescribing practices and their impact in end-of-life situations. Also, it is proposed to establish a standardised guideline to ensure a consistent and systematic approach to deprescribing. Key elements should include structured nurse-led medication review stimuli, such as those identified in this study: reduced oral intake, difficulty swallowing, recurrent adverse effects, and transition to the end-of-life phase. This standardisation would support uniformity and best practices across the organisation. Furthermore, it is advised to introduce the concept of deprescribing earlier in the healthcare process, involving not only healthcare professionals but also patients, carers, and families. This approach aims to encourage well-informed decision-making and collaborative care planning.

Conclusion

Deprescribing was deemed essential for patients nearing the end of life by patients, carers, and community palliative care nurses. This practice was favoured when medication risks outweighed benefits, was financially unsustainable, swallowing difficulties arose, or simplifying medication regimens was desired. However, fears of disease relapse and perceived loss of hope acted as barriers in this process. Nurses demonstrated a strong grasp of the deprescribing process and successfully implemented it, despite their non-prescribing roles, due to robust organisational support. Their confidence stemmed from consistent guidance from hospice physicians and timely information from pharmacy teams. Future research should broaden its scope to encompass diverse healthcare systems and settings, examining how cultural and professional factors influence end-of-life care, thus offering a more comprehensive understanding of deprescribing in various contexts.

Supplementary Information

Below is the link to the electronic supplementary material.

Abbreviations

AHC

Aidah Abdul Hassan Chin (Researcher)

AIDS

Acquired immunodeficiency syndrome

IDIs

In-depth interviews

OHAs

Oral hypoglycaemic agents

PC

Palliative care

PSML

Pauline Siew Mei Lai (Researcher)

SM

Sylvia McCarthy (Researcher)

TPB

Theory of planned behaviour

Author contributions

AHC, PSML, and SM contributed to the conception and design of this work. AHC led data acquisition and prepared the tables and figures while drafting the initial manuscript. The authors analysed, interpreted the data and reviewed the manuscript. All authors have approved the final version for publication.

Funding

Open access funding provided by The Ministry of Higher Education Malaysia and Universiti Malaya. This research was conducted without the provision of specific funding from any public, commercial, or not-for-profit funding agencies.

Data availability

The datasets produced and analysed in this study may be obtained from the corresponding author upon reasonable request.

Declarations

Ethics approval and consent to participate

Ethics approval was obtained from the Medical Research Ethics Committee of the University Malaya Medical Centre (MREC ID NO: 20191025–7943) and Hospis Malaysia prior to the commencement of the study. All procedures adhered to the relevant regulations and guidelines and conformed to the ethical standards set by the Declaration of Helsinki. Written informed consent was obtained from all participants.

Competing interests

The authors declare no competing interests.