In adult patients receiving end-of-life care in community settings, how effective are anticipatory medication-based pain management approaches, including clinician- and carer-led administration, in improving pain relief and symptom control compared to usual care?

 

Abstract

I- The pain management especially for the patients with the end of life remains a clinical challenge presenting a critical dimension where anticipated prescription with injectable medication to be I mean best practice followed in UK, New Zealand, Australia for symptom control.  The background research contributes to a diverse research studies and effectiveness of clinician LED administration while the question remains about Kerala administration of pain relief outcomes for palliative care in adult patients in residential care settings that is yet to be researched. The main aim of this research is systemically examine in order to evaluate how anticipatory medication approaches health pain relief in adults for symptom control compared to the usual hospital care.

M-The current research followed a systematic secondary research reviewing the articles is in different databases like midline Cochrane Library within 2015 to 2024 timeline the use of PRIMSA and synthesis through ‘thematic analysis’, have helped inclusion exclusion criteria to narrow down into select journals meeting the end of life adult population criteria, community setting, measurable pain and symptom outcomes.

R-The studies met the inclusion criteria and using different research method like -mixed method of design, qualitative research, it was found that anticipatory medication prescribed to 5165% of adult dying patient reflected moderate effectiveness in terms of symptom relief. But there was significant delay in the administration in the home environment that was captured which points to carer efficiency when compared to hospital based system raising the concern of training adequacy resource availability and the psychological readiness .

A- The thematic analysis diverged into  streams ‘’ Rapid Innovation and Systemic Adaptation During Global Crisis, Professional Decision-Making: The GP as Gatekeeper and Consultant, Patterns of Frequency, Timing, and Clinical Predictors, The “Simultaneously Reassuring and Unsettling” Patient Experience, Barriers to Medication Administration and Caregiver Burden, Economic Inefficiency and the Paradox of Standardised Wastage, Safety Concerns and the Risks of Advance Prescribing’’.

D-The prescribing patterns from the above research showed standardized approach rather than individualized that could have generated paradoxical economic waste of time and effort leading to unmet clinical needs. The patients and the caregivers have experienced existential distress but the caregiver burden intensified when successive barriers emerged in the process especially ‘out of hour’ period.  The advanced prescribing for the patient safety risk please tell me the clinical oversight and the need for adopting, person centric anticipatory care framework especially when each patient condition differs .

Abbreviation	Full Form
ACP	Advance Care Planning
AP	Anticipatory Prescribing
ARC EoE	Applied Research Collaboration East of England
ARDS	Acute Respiratory Distress Syndrome
BNF	British National Formulary
CAG	Confidentiality Advisory Group
CARiAD	CARer Administration of as-needed subcutaneous medication for common breakthrough symptoms in home-based dying people
CC BY-NC	Creative Commons Attribution Non-Commercial
CI	Confidence Interval
CNS	Community/Palliative Care Specialist Nurse
CONS	Palliative Medicine Consultant
COVID-19	Coronavirus Disease 2019
DN	District Nurse
DNACPR	Do Not Attempt Cardiopulmonary Resuscitation
DOC	Doctor
EOL / EoL	End of Life
GP	General Practitioner
HCP	Health Care Professional
HRA	Health Research Authority
ICU	Intensive Care Unit
IQR	Interquartile Range
IRAS	Integrated Research Application System
ITT	Intention to Treat
NHS	National Health Service
NICE	National Institute for Health and Care Excellence
NIHR	National Institute for Health Research
OR	Odds Ratio
OTHER	Other Professional Group
PELiCAM	Palliative and End of Life Care Group in Cambridge
PPI	Patient and Public Involvement
PRE	Psychology Research Ethics (Committee Reference)
RCT	Randomised Controlled Trial
SC	Subcutaneous
SPCR	School for Primary Care Research
TRAIN	Palliative Medicine Trainee
UK	United Kingdom
USD	United States Dollar
UTI	Urinary Tract Infection

 

 

CHAPTER One

 

BACKGROUND AND SIGNIFICANCE

In community‑based end‑of‑life care, pain management can be complex (Saunders et al. 2019). First, the growing need for community‑based palliative care reflects a preference for home‑based care and the need to ease hospital pressures (Dadich et al. 2023). Second, the reported gaps in timely and effective symptom relief when usual care involves reactive prescribing (Shaw et al. 2023), in which patients and families are unable to access needed medications, is a factor (Manias et al. 2019). Third, the increasing focus on anticipatory prescribing underlines the need for proactive medication planning, allowing clinicians and families to administer pain relief as needed (Bowers et al. 2019). Finally, increasing involvement of family carers in medication administration raises issues about safety, education and support (Gil-Hernández et al. 2024), and Mouna Sawan et al. (2025) argued that it is important to consider the balance of clinician‑led and family carer‑led approaches to medication administration in improving patient quality of life, dignity and comfort. Anticipatory medication‑based pain relief strategies include prescribing and preparing key medications in anticipation of common symptoms in end‑of‑life care (Bowers et al. 2024). This approach guarantees timely access to analgesics and other symptom‑relieving drugs for patients in the community, avoiding delays associated with reactive prescribing (Bowers & While, 2019). Anticipatory medication management strategies provide clinicians and carers with prescriptions, reducing the need for hospital visits and improving home‑care comfort (Kiiski et al. 2025). Clinician‑led administration offers expert oversight and ensures safe administration and protocol adherence, while carer‑led administration allows families, informal carers to administer immediate relief, promoting patient‑centred care (Alkhaldi et al. 2025). This research focusses on the end of life adult patients in the community care settings, and the effectiveness of the anticipatory medication based pain management approaches for pain control and relief.

Aim of the Literature Review          

The purpose of this literature review is to analyse current research about the effectiveness of research variable related to each other to lead to academic gap. In the current study, the literature review examines, anticipatory medication‑based pain management strategies in adults with advanced illness and end‑of‑life care in the community. The review aims to draw on peer‑reviewed research to highlight best practice, limitations and areas for improvement.

Literature review

Anticipatory Prescribing and Pain Management in End‑of‑Life Care

Anticipatory prescribing involves anticipating a patient’s needs for vital medications, preventing a delay in providing pain relief. Research indicates early access to prescribed analgesics enhances comfort and prevents emergency care in the community (Bowers et al., 2023; Bowers, Pollock, & Barclay, 2021). It also promotes coordinated care through patient‑centred care and palliative care standards as evident in England and Wales (Goodrich et al., 2026).

Clinician‑Led vs Carer‑Led Administration Approaches

Clinician‑administered doses offer professional oversight, leading to precise dose administration and adherence to safety protocols, potentially reducing medication errors (Bowers et al., 2021). In contrast, carer‑administered medication empowers families to provide timely symptom relief, promoting patient‑centred care and comfort (Quigley & McCleskey, 2021). Recent studies compare approaches and identify advantages and disadvantages, with clinicians providing safe care and carers facilitating responsive care and family support . (Bowers et al., 2023).

Community‑Based End‑of‑Life Care Models and Usual Care Comparisons

Community‑based care focuses on anticipatory prescribing and shared decision-making, compared to reactive approaches in usual care (Antunes et al. 2022). Evidence shows that anticipatory care decreases hospitalisations and enhances quality of life by addressing pain and distress early (Martin et al. 2019). These models show improved adherence to palliative care principles when compared to usual care, helping maintain dignity and autonomy in end‑of‑life care (Nnate, 2021).

Why Is This Important in Nursing?

Nurses are integral to end‑of‑life care, especially in the community where they are often the linchpin between individuals, families and the health system. Advance prescribing and administration of medications impact nurses’ roles in pain and symptom management and overall care. Nurses benefit from insights into the impact of clinician‑ or carer‑led strategies by individualising care, supporting families, and promoting medication safety. This empowers nurses, supports comfort and dignity for the patient, and provides support for family carers – leading to better palliative care in community settings.

 

1.2.  DEFINITIONS

End of life care-This is a 360 degree approach where the patients facing the final stages of their life cycle curve need a holistic care.

Clinician led administration- It is about medication delivery offered by trained certified professional staff who are categorized as healthcare professionals working in an organization.

Carer led administration- It is the procedure of medication offered to the patient by the nearest family members or informal caregivers.

Anticipatory prescribing – It is a method of proactive method of provisioning the medication even before the symptoms in the patients escalate.

Community based palliative care- Any procedure of care delivered outside the medical hospital setting which emphasizes a broader community support with home environment facility.

Pain management – Strategies and methods in the form of interventions that help patients to relieve the degree of pain in the body.

 

 

 

Chapter 2: Methodology

 

The methodology section provides a justification of the procedures to be followed to locate pertinent literature, to answer the research question and fulfil the research objectives. The systematic research-based literature review involves the formulation of a purposeful research question, systematic way of searching appropriate articles, evaluating each article individually and finally assessing the published outcomes (Houghton, Hunter, & Meskell, 2012). A quality literature review may not be a comprehensive as a systematic review, although it deploys a systematic approach when searching and analysing the literature.

Formulating the review question:

A literature review as defined by Lame, (2019) is a first step towards understanding, in which the first thing is to come up with a review question. This nursing review aims to respond to the following question: ‘’ In adult patients receiving end-of-life care in community settings, how effective are anticipatory medication-based pain management approaches, including clinician- and carer-led administration, in improving pain relief and symptom control compared to usual care?” ’. Therefore in order to develop a concise focused question based on the topic selected above, the PICO (Population, Intervention, Comparison, and Outcome) (Schiavenato, & Chu, 2021), and SPIDER tools were chosen to use in the study (Munhall, 2012). Although PICO is a powerful instrument in formulating research questions, it is quantitative in nature.

Element	Description
P (Population)	Adult patients receiving end-of-life care (home/community settings)
I (Intervention)	Anticipatory medication-based pain management (including structured tools and carer-supported administration)
C (Comparison)	Usual care (standard clinician-led medication administration)
O (Outcome)	Pain relief, symptom control, timeliness of medication, patient and caregiver experience

 

Qualitative approach:

Only the qualitative research method was applied to answer the question, which is, ‘’ In adult patients receiving end-of-life care in community settings, how effective are anticipatory medication-based pain management approaches, including clinician- and carer-led administration, in improving pain relief and symptom control compared to usual care?”  and Kilpatrick et al. (2023), emphasize the fact that the framework of a literature review has to be very similar to the questions that were posed when conducting a literature review. The qualitative research will aim at exploring the phenomena of humans that provide descriptions and an elaboration of these phenomena in a detailed way (Choi et al. 2022). The approach places depth in the forefront with the perspectives of the participants as the centre stage (Bettany-Saltikov & McSherry, 2024). Though it has been criticized that qualitative literature reviews may lack being systematic,

Table1: Formulation of the research question

Sample	Research phenomenon of interest	Research Design	Evaluation	Research type
End of life adult care in clinician, carer led anticipatory medication for pain relief and symptom control	Treatment of how the adults approaching end of life got clinician, care (community) based was able to manage pain	Exploratory	Experiences	Qualitative

 

leaving behind less reliable evidence found by chance and not by rigorous means Patterson et al. (2023) highlight that rigour, sometimes called trustworthiness, may be achieved through transparency and reporting of the systematic procedure adhered to.

Search strategy:

The research study variables, i.e. describe the overall phenomenon of the research, which is pertinent to the review question, were identified using a systematic search. It involved search using embedded in the topic keywords, and combination of variables, which are related to the review question (Chigbu et al. 2023).

 

 

Table 2: Keywords

Keywords

OR ‘’ end-of-life care ‘’’adult patients’’, AND ‘’ anticipatory medication in end of life adult patients’’, AND ‘’ clinician led pain management approaches, AND ‘’ carer-led administration for pain management’’, ‘’ pain relief and symptom control for end of life adult patients ’’, ‘clinician based’’ ‘’carer based pain management approaches’’, ‘’ research method’’.

 

This assisted the researcher to ensure that the output of the selected literature is exhaustive, it is not selective or it does not have a cherry-picking research studies . The research keywords were combined with the Boolean operators and truncation (asterisk,) to locate the necessary literature (Caponnetto et al. 2024). To determine the availability of qualitative literature on the chosen topic, preliminary scoping search was performed through the assistance of such keywords as – adult end of life care, anticipatory medication, community care, pain reflef approaches. Despite this search yielding a couple of indirectly relevant literature, new keywords were discovered, such as moral distress, treatment cessation and emotional impact, and were added to the search procedure (see Table 2), which assisted in locating more relevant literature. Inclusion: propose the use of the identified keywords to incorporate different variations of the topic of the review. The Boolean operators of ‘AND’ and ‘OR’ were used successfully to combine search concepts (, ) and to make a search concept broader with the help of truncation (,) at the risk of retrieving irrelevant articles.

Database searched:

Bibliographic databases were employed in order to sustain the focus and choose the unbiased literature review. The general search engines present in the market like Google search engine, which can be extremely fruitful in giving a variety of information output can prove to be unreliable (Azarian et al. 2023). The databases that were implemented in this study such as MEDLINE (Heintz et al. 2023, CINAHL (Hopia & Heikkilä, 2020), PsycINFO (Leclercq et al. 2019), APA and Academic search (Rahaman, Taru, & Prajapat, 2023) complete were of choice because they had the ability of retrieving subject area specific articles.

CINAHL is a variety of nursing literature, and search tool in that field, that is capable of finding qualitative research. It provides practical research articles in the setting of UK despite the USA bias the production are plausible (Bettany-Saltikov, & McSherry, 2024). Conversely, MEDLINE search has a variety of information on medicine and nursing. Likewise, to 98% of peer-reviewed journals available on the APA PsycINFO focus on psychological care in nursing area (Ravi et al. 2022). Academic search is complete thus, is a multidisciplinary database, which widens the scope of the available scholarly articles (Höglander et al 2023). The search was also limited to the English language using limiters which narrowed the search to publications published in the last 2018-2025, which might have excluded the possible existence of studies of interest.

Inclusion and Exclusion criteria:

A systematic search strategy requires having clear inclusion and exclusion criteria (Randles, & Finnegan, 2023), (see Table 3) that would allow only the studies that are directly related to the review question to be selected. In this case the prioritised studies were those that examine the experiences of end of life care in community settings, in relation to the ‘.anticipatory medication-based pain management approaches, including clinician- and carer-led administration.’ . The use of Cochrane systematic reviews is said to be the gold standard but they were not included since they focused on healthcare interventions, not the subject of this review. Instead, peer qualitative research was chosen based on its credibility and quality assessment (Johnson, Adkins, & Chauvin, 2020). Although, it can be based on their experience of other countries a lot, and the given aspect is not developed in other countries in particular in order to refer to it in the given research. These criteria helped to cut down the search and ensure that only the applicable studies to the review question were included in the search.

Criteria	Inclusion Criteria	Exclusion Criteria
Population	Adult patients (≥18 years) receiving end-of-life or palliative care	Paediatric populations; non-terminal patients; general chronic illness without end-of-life focus
Setting	Community, home-based, residential care, hospice, or hospital end-of-life settings	Studies not related to end-of-life care (e.g., acute non-palliative care, rehabilitation settings)
Intervention	Anticipatory medications or structured pain management approaches (e.g., injectable medications, carer-administered medication, pain assessment tools)	Studies focusing only on non-pharmacological interventions or general care without a pain management component
Comparison	Usual care, standard clinical practice, or absence of structured anticipatory medication intervention	Studies without any comparator or evaluation of intervention impact
Outcomes	Pain relief, symptom control, timeliness of medication administration, patient or caregiver experience	Studies not reporting pain-related or symptom control outcomes (e.g., cost-only studies, policy discussions)
Study Design	Primary empirical studies (RCTs, qualitative studies, mixed-methods, observational studies)	Systematic reviews, literature reviews, editorials, commentaries, opinion papers
Geographical Context	Studies conducted in the UK or comparable healthcare systems (e.g., developed countries with similar palliative care models)	Studies from significantly different healthcare contexts where findings are not transferable
Time Frame	Studies published from 2018 onwards	Studies published before 2018
Language	Studies published in English	Non-English publications
Focus of Study	Studies examining anticipatory prescribing, medication administration, or effectiveness of pain management in end-of-life care	Studies focusing only on prescribing behaviour, policy change, or cost analysis without linking to patient outcomes

Study selection:

The studies selection process elaborates how the literature which is directly related to the review question was selected and the PRISMA diagram by Page et al. (2021) gives a clear picture about the process (see figure 1). The removal of the duplicates resulted in 421 results across 4 databases (110 MEDLINE, 120 CINHAL, 130 APA, 61 Others ) totalling 360 of which were irrelevant studies 230 filtered out by reading their titles and abstracts, and the given procedure enables focusing on the studies that are connected with the review question. Further exclusions added to 36 more articles were caused by another screening process against inclusion criteria.

 

PRISMA

New studies included in review (n =0 ) Reports of new included studies (n =0 )

Included

Total studies included in review (n =4 ) Reports of total included studies (n = 4)

Identification

Studies included in previous version of review (n = 421)

Previous studies

Records identified from*: Databases (n = 4) MEDLINE (n=110) CINHAL (n=120) APA PsychInNFO (n=130) Academic search (n=61)

Records removed before screening: Duplicate records removed  (n =190 ) Records marked as only abstracts (n =29 ) Records removed as non english (n =11 )

Records screened (n =360 )

Records excluded** (n =230 )

Reports sought for retrieval (n = 130)

Reports not retrieved (n =0 )

Reports assessed for eligibility (n = 130)

Reports excluded:n=36 Reason 1 Studies are not on pain (n =33 ) Reason 2 Study was not Cochrane (n =49 ) Reason 3 No adult end of life pain experiences  (n = 66) etc.

Identification of new studies via databases and registers

Screening

 

 

Critical Appraisal

Critical appraisal of any research study procedures possess their own strength and weaknesses in the evaluation power as well as the quality and relevance of the article selection with regard to the research question (Brignardello-Petersen, Santesso, & Guyatt, 2025). The CASP checklist is appropriate to qualitative research studies and in the present process of appraisal, the authors suggest its significance in the mythology specific tools that have checklists to demonstrate the qualitative research to demonstrate rigour (Frias-Goytia et al. 2024). The qualitative research to demonstrate the quality of the decision to include the study in the analysis and to adopt comprehensive assessment based on the professional guiding standards.

 

 

Chapter 3: Critical Appraisal

 

Study1: Anticipatory prescribing in community end- of- life care in the UK and Ireland during the COVID-19 pandemic: online survey [Antunes, 2020]

Research Issue, Aim and Objectives-The COVID-19 pandemic has drastically raised the death rates at home and in care homes in the UK and Ireland. This generated acute stress on the already existing practice of anticipatory prescribing (AP) – the pre-emptive dispensing of injectable drugs to relieve symptoms in the last few days of life. There were fears of drug shortages, decreased nurse and doctor supply to give subcutaneous injections and the necessity to rapidly adapt prescribing instructions. The research fills an urgent evidence gap on the ground on the transformation of AP practice in response to these pressures. The overall objective was to explore the experience of change in AP practice among UK and Ireland clinicians during the COVID-19 pandemic and to elicit their suggestions of how the change can be improved. The four targeted research questions inquired what practitioners reported about: (1) drug prescription changes; (2) drug administration changes; (3) support structures of AP; and (4) additional practice, policy and legislative changes.

Research Appraisal-The study is a cross-sectional online survey study conducted in mixed methods, i.e., quantitative (descriptive statistics of the categorical responses) and qualitative (inductive analysis of the themes of the free-text responses) ways. One of the main methodological strengths is its timeliness: data were gathered April 2020, when the practice is being carried out in the acute period of COVID19 pandemic which captured unique perspectives (Schroeder et al. 2020. The geographic coverage in UK and Ireland regions and the size of the sample (n=261) further enhances representativeness. Methodological rigour is demonstrated by the use of ‘CHERRIES’ checklist, which is used to report internet surveys (Torrejón-Guirado et al. 2024). Nevertheless, a number of shortcomings are recognized. Snowball sampling means that a response rate cannot be calculated, and it brings about self-selection bias (Kubiciel-Lodzińska, 2021). The sample was selected based on professional contacts that have already been involved in AP (e.g., workshop attendees, members of palliative medicine), so the sample might be biased toward specialist and not generalist practitioners which was also found by (Jones et al. 2021). Moreover, this was also an initial analysis of a preliminary dataset, and the authors planned to conduct a more thorough follow-up analysis.

Sampling and Selection-It was first conducted as purposive sampling, whereby the delegates of AP national workshops of 2019 and the representatives of the corresponding professional organisations such as the ‘’Association for Palliative Medicine of Great Britain and Ireland’’, the ‘NICE Medicines Associate Programme’, the ‘Resilient GP Facebook Group’ and the ‘Queen Nursing Institute’ were targeted. This was propagated via the snowball sampling method in which recipients were requested to share the survey link in case of interested workmates which was also found in the study of (Artioli et al. 2019). The survey was open 813 April 2020 (to be distributed) and responses received by 19 April 2020. The respondents were over a group of professional roles – the majority of them (37 percent) were palliative medicine consultants and GPs (24 percent) which (Clark et al. 2023) found in their research, with various working environments, low resource setting, within the community, hospice, hospital and care home.

Research Ethics-The ethics committee of the University of Cambridge Psychology Research reviewed and gave the study approval (reference: PRE.2019.013). It was a voluntary participation, all fields were obligatory to complete the data, but the answers were anonymous by default meeting the ethical procedures (EL Barbi et al. 2024). Contact details were provided by the respondents at their own discretion and could only be used as a factor in considering the respondent to be contacted to complete further interviews by telephone, hence, the respondents were clearly separated between taking part in the anonymous survey which without additional participation added to rigour in health research (Koo, & Yang, 2025). No formal patient consent requirements are mentioned in the study, which was correct considering that the survey was focused solely on the clinicians and not on patients. The ‘NIHR Applied Research Collaboration East of England’ funded the study with a clear disclaimer that the opinions were that of the authors only.

Study2: GPs’ decisions about prescribing end-of-life anticipatory medications: Bowers et al. (2020)

Research Issue, Aim and Objectives-Anticipatory prescribing (AP) of injectable drugs is a longstanding aspect of community end-of-life care in the UK, Australia, and New Zealand, which is aimed at the timely control of symptoms during the last days of life. Although the central prescribing authority was in the hands of GPs, there was minimal research studies that investigated their decision making processes in the context of AP. Rae, (2024) stated that the literature previously had been overly focused on the views of nurses, and while (McNab, 2022) found that it has tended to depict nurses as the instigators of prescribing requests and GPs as reluctant or reactive prescribers. There were still critical gaps in terms of how GPs construct AP discussions with patients and families, when prescribing, and the responsibility of drug administration after prescription which (Morris et al. 2021) used realist research phenomenon to prove patient role in AP. The research fills this underexplored view in a field of considerable clinical and ethical dilemma. The purpose of the stated aim was to investigate how GPs make decisions regarding prescribing and use of anticipatory medications to patients towards the end of life. Although there are no officially stated objectives, the study implicitly aimed to investigate three lines of inquiry: the reasons behind why GPs choose to prescribe (when and whether); how GPs discuss the issue of AP with patients and families; and how GPs cope with the continued responsibility of the prescriptions they make, especially in their relationship with community nurses in their delegation of care.

Research Appraisal-It is a qualitative study, interpretive descriptive and semi-structured in-depth interviews with an analysis in a six-phase thematic analysis framework by Braun and Clarke in nursing study (Ahmed et al. 2025). The interpretive descriptive design is suitable to its goals, as it produces detailed, contextually detailed information about professional practice and decision-making and not testing hypotheses that (Duff et al. 2020) stated as interpretative based representation of healthcare practice. The inductive method enabled us to identify three subtle themes that would naturally arise out of the data: *something we can do, getting the timing right and delegating care but retaining responsibility. Ryder, Jacob, & Hendricks, (2019) as the aspect of rigour was improved by a series of analytical lenses: one of the public contributors coded the first three transcripts independently, a second researcher coded six transcripts, and (Klooster et al. 2022) highlighted the importance of analytical decisions were discussed in an iterative manner. Reflexivity was directly discussed and the lead researcher had previously worked as a community palliative care nurse and therefore a positionality that which (Moralli, 2024) argued to have facilitated both rapport and necessitated direct control to prevent interpretive bias. Another weakness is that data are based on GPs self-report of practice, as opposed to observed behaviour, and thus social desirability bias can occur which was argued by (Bailey & Wundersitz, 2019). Direct generalizability is also constrained by the single-county sampling frame though the authors propose analytical transferability between UK settings because of the combination of urban and rural practices.

Sampling and Selection-Purposive sampling was used to sample GPs who had a broad spectrum of views and experience which (Ibrahim, Barry, & Hughes, 2023) argued to guide research to adopt qualitative study. Potential participants were found through publicly available GP practice websites in one English county. Letters to thirty two GPs were sent; sixteen of them were interested and thirteen were finally interviewed in the course of June to December 2017 in thirteen separate GP surgeries. The last sample consisted of ten GP principals and three salaried GPs, five of whom worked out-of-hours. There was intention to find diversity in terms of sex, place of practice (urban/rural), full-time/part time and interest in palliative care. Information saturation was achieved successfully after eleven interviews, and two more interviews were held on the purpose to guarantee an appropriate variety of insight which was highlighted by (Braun & Clarke, 2021), and which is in line with the information power principles in qualitative sampling.

Research Ethics-The research was ethically approved twice: by ‘Cambridge University Psychology Research Ethics Committee’ (reference number PRE.2017.028) and NHS Health Research Authority (HRA IRAS reference 225853). Informed consent was obtained beforehand by all participants and respondents were interviewed with their knowledge and consent which was audio-recorded though (Sindhuri & Dongre, 2023) highlighted challenges remain in obtaining informed consent in healthcare setting. The published findings make use of pseudonyms to ensure anonymity of participants. The ‘NIHR Applied Research Collaboration East of England’ and the ‘NIHR School for Primary Care Research’ funded it, and a typical disclaimer that opinions are those of the authors only. None of the authors indicated any competing interests.

Study3: Unwelcome memento mori or best clinical practice? Community end of life anticipatory medication prescribing practice: A mixed methods observational study Bowers et al. (2021)

Research Issue, Aim and Objectives-Although anticipatory prescribing (AP) has been extensively advocated and practised in the UK, Australia, Canada, Norway and New Zealand, there was strikingly little empirical data available. Zhang, Méndez & Scott, (2019) study confirmed findings, on the frequency of AP medication prescribing, the time of illness course when the prescription occurred, and the clinical contexts within which prescription choices were made. The published rates of prescribing were quite different, between 14-16 percent of foreseeable deaths in primary care groups, to 63 percent among those receiving specialist palliative care, but were based on heterogeneous and methodologically weak sources. There were serious issues arising on patient safety and especially where medications were prescribed well before they were expected to be needed (Bates et al. 2023) while (Ocloo et al. 2021) where they were administered by clinicians who were not familiar with the patient. The lack of evidence relating to patient and family engagement in prescribing decisions was also prominent and this was of great concern which was highlighted by (Manias et al. 2024), to the issue of informed consent and person-centred care in community end-of-life practice. The mentioned objective was to conduct research on the frequency, timing and documented conditions of injectable end-of-life anticipatory medicine prescribing to both home and residential care patients. The aim of the study was to determine: how frequently AP medications were prescribed in a varied sample of GP practices; the fluctuation and distribution of time between prescription and death; what clinical contexts and decision-making process were recorded in patient records; and how much patient and family engagement were recorded in prescribing decisions.

Research Appraisal-It is a retrospective mixed methods observational study, which relies on the GP and community nursing clinical record on the basis of which a social constructionist paradigm is applicable since it acknowledges that clinical records represent selective accounts by clinicians, rather than objective data. The mixed methods design is well adapted to the objective, allowing quantitative examination of the prescribing frequency, timing and patient characteristics, and inductive examination of described contexts, language and interactions within prescribing choices. Descriptive statistics, chi-square and Fisher exact tests, as well as multivariate logistic regression were used, with a priori computation of sample size (Madadizadeh, Soodejani, & Bahariniya, 2026). Constant comparison incident-to-incident analysis through NVivo 12 was employed in qualitative coding (Chun Tie, Birks, & Francis, 2019). Rigour was aided by thematic refinement through iteration with co-investigators and two Patient and Public Involvement (PPI) groups which is important for validation of data and findings (Vellani et al. 2024), the Cambridge Positive Ageing group and the Cambridge Palliative and End of Life Care group, who helped in prioritising research and its interpretation. One of the limitations is that clinical records only provide a partial record of clinical interactions, especially, patient and family discussions as (Brooks, Manias, & Bloomer, 2024) argued that the results on decision-making involvement might not reflect practice. Cohabitation and opioid misuse risk, socioeconomic status were not routinely measured, which constrained the ability to adjust confounding variables. The purposive maximum diversity sampling method and sequential deaths identification methodology enhance generalisability (Safari, McKenna, & Davis, 2023).

Sampling and Selection-Purposive sampling was used to select 11 GP practices and two related NHS Community Trusts across two English counties to maximise variation in the size of patient lists (range 5,50043,000), geographic location (urban, rural, outer London) and socioeconomic status (third most deprived to least deprived decile). This meets the findings of (Parsaeian et al. 2021) as quality and cost of research effort needs to be explored and sampling is critical. Each practice identified the 30 most recent expected adult deaths of patients who had lived at home or in residential care at least one day in their last month and died of any cause other than trauma, sudden death or suicide between March 2017 and September 2019. Nursing homes with on-site trained nurses were included and the patients who had not participated in the research were excluded. This produced a final study population of 329 dead patients. The sample was mainly aged 75 and above (65.7%), mainly male (51.4) and mostly dying of non-cancer causes (58.7).

Research Ethics-The South Cambridgeshire Research Ethics Committee (reference: 19/EE/0012) gave full ethical approval. Since the research study implied retrospective access to the clinical records of deceased patients and the absence of their personal consent, further consent of the Confidentiality Advisory Group of the Health Research Authority (reference: 19/CAG/0014) was obtained that permitted the processing of confidential patient information under the condition that data were anonymised as soon as possible. The two PPI groups recommended the ethical acceptability of the access to the records of deceased patients without consent. Tadros, Carley, & Lucassen, (2020) argued that bringing a community voice to the sensitive decision, which has been an issue especially in COVID19 time period as well (Schoch-Spana et al. 2020). No conflicts of interest were reported. The NIHR School of Primary Care Research, NIHR Applied Research Collaboration East of England, and RCN Foundation Professional Bursary Scheme funded it.

Study4: Simultaneously reassuring and unsettling:a longitudinal qualitative study of community anticipatory medication prescribing for older patients Bowers et al. (2022)

Research Issue, Aim and Objectives-Although the notion of anticipatory prescribing (AP) is widely established as a good clinical practice in the UK as well as internationally, the views of patients and informal caregivers had virtually been missing in the evidence base. The overwhelming premise that AP was based on, namely, the effect of medications being available in the house reassures everyone involved, allows the symptomatic relief to occur promptly and avoid unnecessary crises hospitalization, as (Majumder, 2024) argued it was based more on beliefs conveyed by clinicians, as opposed to patient or family experience. Only a single previous study had investigated the opinions of patients, with the results indicating that prescriptions were considered as a sign of impending death which (Krikoria et al. 2020) stated to be a key contributor for medical audit and review. Three other studies had examined the experiences of bereaved caregivers retrospectively, expressing concerns regarding insufficient explanations, ambivalence regarding effectiveness and concerns regarding drug safety where families withdrawing from treatment was also reported (Korsah, Schmollgruber, & Abukari, 2025). More importantly, no prospective study had investigated the experiences of older patients and their informal caregivers with regard to AP as it occurred in the real-time or how they coped with the practical and emotional challenges of obtaining and self-administering prescribed drugs, which (van der Zijpp et al. 2022) argued to focus on relationships, medication dispensing system narratives to be captured. This is a big gap considering that older patients are the largest number of those who die in the community and the main beneficiaries of AP. The objective of the study was to get insights into the perceptions and experiences of older patients, informal caregivers and clinicians regarding the prescription and use of anticipatory medications in the community. The implicit aims were to: investigate the experience of prescribing conversations with patients and their families; study the emotional and practical reactions to medication in the home over time; investigate how informal caregivers and nursing staff negotiated the decision to administer medications; and identify the invisible work that families do to manage AP care.

Research Appraisal- Particular methodological strength is the longitudinal case-based design, which permits the perspectives to be recorded at several times – after prescribing, after the first administration, and two- to four-month follow-up. Elsahn et al. (2020) argued that not always methodological rigor is captured through technology and research management, so that the changes in understanding and experience can be monitored over time. Constant comparison techniques were used to conduct thematic analysis, and initial line-by-line coding in NVivo 12 and independent coding (Humble & Mozelius, 2022). Five transcripts by a second researcher was used to enhance analytical rigour and reflexivity. Important interpretative choices were narrowed down after a series of debates involving all three authors and the Patient and Public Involvement (PPI) groups. One of the clear weaknesses was the fact that it was not always possible to interview the patient and two cases did not involve patients. Morris et al. (2020) attributed it because of fluctuating cognitive impairment which biased some of the analysis to caregivers and clinician perspectives. The sample was also purely white and English speaking which constrained generalization to other communities. Notably, all nurses that were engaged in the administration of medications refused to take part in the study, and an essential professional voice was missing in the dataset. The COVID-19-induced data collection implied that interviews were carried out remotely, which (Bandini et al. 2022) argued have been less in-depth than face-to-face, as well as put into perspective some of the remote prescribing practices identified.

Sampling and Selection-Purposive sampling strategy was used to select participants who were diverse. Ames, Glenton, & Lewin, (2019) stated that diversity in respondents in terms of age, living arrangements, terminal conditions and geographical setting, in two English counties. Six GP practices, two community nursing organisations and three community palliative care teams were used to facilitate recruitment. They used to first assess the appropriateness of approaching potential participants because the context was sensitive and then provide study invitation letters which requires researcher to decide on survey or interview based on access (Klar & Leeper, 2019). Among the 34 patients and informal caregivers who showed interest, 16 were willing and available to participate on being contacted. Patient and caregiver participants nominated twelve clinicians who were approached by letter and six agreed. The last sample included 11 patient cases but included six patients (65-94 years old) as well as nine informal caregivers and six clinicians- three GPs and three nurses. Information power led to the end of data collection wherein 11 cases were taken based on the information power where rich multi-perspective longitudinal data was deemed adequate to answer the research objective. A total of 28 interviews were carried out.

Research Ethics-The study was approved by the South Cambridgeshire Research Ethics Committee (reference: 19/EE/0361). Ethical approval was fully informed, and continued approval was expressly re-established before each subsequent interview, in light of the possibly dynamic ability and desires of a dying population. Initial recruitment by clinical teams to ensure vulnerable patients and caregivers, are not overburdened or put at a disadvantage by undue stress. The two PPI groups Cambridge Positive Ageing and Cambridge Palliative and End of Life Care were involved in the research design. Nii Laryeafio & Ogbewe, (2023) argued that the recruitment procedures, the words to use as interview guide and interpretation of the findings, thus integrating the lay perspectives in the research process. No conflicts of interest were reported. The NIHR School of Primary Care Research, NIHR Applied Research Collaboration East of England and the RCN Foundation Professional Bursary Scheme funded it.

Study 5: The financial costs of anticipatory prescribing: A retrospective observational study of prescribed, administered and wasted medications using community clinical records- Morgan et al. (2023)

Research Issue, Aim and Objectives–Anticipatory prescribing (AP) of injections at the end of life is strongly advised in a variety of states and has become the norm of community palliative care. However, although it was extensively used, the financial implications of this intervention had come under a very minimal serious examination. Past cost estimates were done using partial data – usually estimating the price of two three days worth of the four most commonly used pharmaceuticals, arriving at figures of between 22.12 and 30.26 in regard to prescription and 10.00 and 14.61 in regard to the unused drugs. These estimates did not take into consideration the entire spectrum of drugs actually prescribed, as (Benhamou et al. 2024) argued about the changes in quantities issued, foreseen syringe driver prescriptions or real rates of medication dispensing and wastage. Parallel evidence was also arising that standardised prescribing as opposed to individualised prescribing was routine, often with predetermined amounts of vials irrespective of the specific patient symptom as reported by (Andersson, 2023). It caused apprehension over wasteful spending and the squandering of medication (Penati, 2024). As AP costs are thought to have an insignificant role in the policy and clinical discussion, there was a gap in the financial evidence base that needed systematic investigation with complete and patient-level clinical data (Sturmberg et al. 2024). The purpose of the stated aim was to determine the costs of anticipatory medications dispensed, administered and not used to patients at the end of life at home and in residential care. The implicit objectives of the study were to: compute total costs of prescription per patient at patient level and drug level, compute percentage of prescribed medications that were actually used and that were wasted, compute specific drugs that contributed the most to the unused medications and it was also to see whether patient characteristics that included anticipatory syringe driver prescriptions, GP practice, cause of death and timing of prescription were statistically significant in difference of prescription, usage and wastage costs.

Research Appraisal-It is a retrospective, observational study based on GP and community nursing electronic and paper clinical records, and is a secondary analysis of data gathered previously to conduct the Bowers et al. (2021) mixed methods study. The research adopts a stringent quantitative methodology, and the costs were systematically calculated (Abu, Shafie & Chandriah, 2023). This was done at both patient and drug level based on a standardised reference of costs at British National Formulary tariff prices. The statistical analysis was well-specified, with non-parametric Kruskal-Wallis H tests in univariate analysis due to non-normally distributed cost data, with multivariate linear regression with bootstrapping to control confounding variables, such as gender, age, cause of death and GP practice. One of the strongest methodological aspects is the administration of complete paper and electronic records to allow real administration data to be captured (Zeleke et al. 2021), which is not regularly available in large-scale primary care data as medication usage is not logged in a systematic manner. The biggest weakness is that non-medication costs are not included, such as the time spent by community nurses making visits, GPs prescribing time and family carer input, so the actual economic cost of AP is probably understated (Lam et al. 2022). The two counties in England where the study was carried out were relatively well off thus restricting the generalisability to poorer and more ethnically diverse societies. Prices of drug tariffs can also be a local issue because of negotiations with suppliers, but the prices of BNF are an example of a standard and generally accepted benchmark.

Sampling and Selection-The sample size was the same as Bowers et al. (2021), and included patients enlisted in eleven GP practices and two related NHS Community Trusts in two English counties. Each of the practices selected the 30 most recent eligible deaths, and a pre-determined sample size of 330 patients was used to allow sufficient statistical power. The patients inclusion criteria was that they had to be aged 18 or more, lived at home or in a residential care home at least one day during their last month of life and they had to die between March 2017 and September 2019 due to any cause other than trauma, sudden death or suicide. On-site nursing care nursing home residents were excluded. Out of 167 patients taking anticipatory drugs, 164 were not left out of the cost analysis as they had full records and only three were left out because of incomplete records. The GP practices were chosen purposefully to achieve a maximum distribution of diversity in terms of practice size list, geographical location and socioeconomic variables.

Research Ethics-The South Cambridgeshire Research Ethics Committee (reference: 19/EE/0012) gave its ethical approval. Since the research was based on retrospective access to the clinical records of deceased patients without the direct consent of the patients, the Confidentiality Advisory Group of the Health Research Authority (reference: 19/CAG/0014) granted permission to process confidential patient information on the condition that it would be anonymised as soon as possible. There were no conflicts of interest that were declared. The Wellcome trust, NIHR School of primary care research and NIHR Applied Research collaboration East of England funded it, but a typical disclaimer that opinions are those of the authors only.

 

 

Chapter 4: Synthesis

 

4.1 Discussion

This is an analysis of the research findings of five fundamental research papers on anticipatory prescribing (AP) in community palliative care, mainly in the United Kingdom and Ireland. Such sources are a national survey of clinicians in the COVID-19 pandemic (Antunes et al., 2020), a qualitative investigation of the process of General Practitioner (GP) decision-making (Bowers et al., 2020), a retrospective observational study of the frequency and timing of prescribing (Bowers et al., 2021), a longitudinal qualitative study of patient. Also the chosen research analysis gave perspectives of caregiver experiences (Bowers et al., 2022), new dimension of economic analysis of medication (Morgan et al., 2023) which gave a new dimension to research. The aggregate study synthesis, showed collectively, for the unravelling of the complex landscape, that points to the aspects of the clinical necessity, need for the professional autonomy, framework for patient psychological wellbeing mapping, and maintaining institutional economic efficiency and the management operations conflict.

Theme 1. Rapid Innovation and Systemic Adaptation During Global Crisis

The COVID-19 pandemic acted as a stimulus to drastic and swift changes in AP practice. The national survey by Antunes et al. (2020) indicates that clinicians noted significant changes in routes of administration (47%), the type of drugs prescribed (38%), and the overall volumes dispensed (35%). The crisis required a shift to remote patient evaluations through telephone or video (63%) to reduce the risk of infection. One of the notable innovations was the greater focus on non-injectable routes, including buccal, sublingual, and transdermal delivery, especially in cases where there were limited healthcare professional (HCP) resources. It was also during this time, that there was a marked change toward family caregiver administration of medications (37%), which was very uncommon in the UK but hastened by the fear of nurse shortages while (Husted, & Dalton, 2021) argued not to show resource scarcity. Another policy that was promoted by clinicians was legislative reforms that could allow used and unused medications to be repurposed and recycled in care homes, that (Makki et al. 2019) findings supported, in order to counter the possibility of running out of stock and minimizing waste.

Theme 2. Professional Decision-Making: The GP as Gatekeeper and Consultant

The AP process heavily depends on the role of the GP but their reasoning can be informed by the necessity to cope with clinical uncertainty. Bowers et al. (2020) found that GPs perceive AP as something we can do when no longer appropriate active medical options apply. The medications are frequently prescribed by GPs as an insurance policy to avoid out of hours crises, despite the fact that they may end up being unused at all. Interestingly, although most GPs are actively on the forefront of such decisions, they also perform the role of a medical consultant (Bi & Liu, 2023), by passing the everyday evaluation and administration to the nurses in the community. This delegation is significantly dependent on the history of relationships based on trust, which is increasingly becoming tense as a result of organisational transformations that have divided communication between centralised nursing hubs and GP surgeries (Rudebeck, 2019). In addition, the presence of AP medications in a home is a frequently used sympathetic indicator by GPs to warn other clinicians who come to the home that it is no longer the primary goal of care, but the management of terminal symptoms (Andrews et al. 2020).

Theme 3. Patterns of Frequency, Timing, and Clinical Predictors

The retrospective observational data by Bowers et al. (2021) offers a statistical map of AP prevalence in detail. About half of potentially predictable deaths patients received AP medications (50.8%). These prescriptions were dispensed approximately 1,212 days before death and with a median of 17 days, with the highest prescriptions date being the day of death and the lowest being 1,212 days before death. Other important predictors of being an AP prescription recipient were specialist palliative care involvement (OR 7) and a recorded preferred place of death (OR 34). Of the patients, the data indicates that in 66.5 percent of the cases, AP was not a dynamic process but a one-size-fits-all intervention that was documented and ordered in conjunction with the other end-of-life planning forms such as DNACPR forms that was also reported in findings of (Pereira et al. 2020). This implies as (Majumder, 2024) argued that it is overdependent on electronic templates that can easily bureaucratise terminal care instead of personalising it.

Theme 4. The “Simultaneously Reassuring and Unsettling” Patient Experience

AP is a very sensitive and at times emotional experience to the patient and his/her informal caregivers. Bowers et al. (2022) referred to the intervention as both reassuring and unsettling. Although the drugs give a feeling of safety that the pain would be under control, their delivery is a sign of impending death and a physical reminder of the terminal condition of the patient. There is a coping process of living in the present used by many patients and care givers, which also reported in (Zhang et al. 2023) who used field study in order to attempt to put thoughts of death aside despite having already made plans. Discussions about AP were frequently identified to be unclear or professional-focused, with families being given the bag of medicines that (Palapar et al. 2023) findings showed to create documentation and dialogue, without much or no sense-making at all. As a result, a large number of care givers turn to the internet to find out the role played by the drugs administered to them.

Theme 5. Barriers to Medication Administration and Caregiver Burden

There is a very serious disconnection between the act of prescribing drugs and their actual taking. Bowers et al. (2022) discovered that informal caregivers frequently have a hard time convincing nurses to administer the prescribed medications. Giving more emphasis to the clinical evaluation of the nurses, rather than to the information provided by the family, is a common problem of nurses that may cause certain delays in relieving the symptoms, causing a lot of distress to the caregiver who is to act on behalf of the patient. Moreover, caregivers also do considerable work behind the scenes, such as organization of pharmaceuticals, checking prescription orders, and integration of services provided in a disjointed manner which (Ashimwe, & Davoody, 2024) found to be meeting similar results . This burden of treatment may turn overwhelming to flimsy support systems which was shown by (Linzer et al. 2022) how they feel, particularly where there is the breakdown of professional promises of timely care in practice.

Theme 6. Economic Inefficiency and the Paradox of Standardised Wastage

Morgan et al. (2023) present a financial analysis that shows that there is an important economic paradox in AP practice. Whereas the average cost of an AP prescription is fairly low at £43.17, 85% of this amount is wasted. The average price of drugs actually dispensed to a patient is just £2.16, which implies that most of the dispensed drugs ended being destroyed. The disproportionate contribution of specific drug classes to this waste includes anti-emetic drugs (Haloperidol and Cyclizine) and anti-secretory drugs (Glycopyrronium Bromide) that produce 64% of the total costs of wastage. The research proposes that the prevalent norm of ordering five vials of each drug that (Cruz et al. 2019) argued on knowledge-attitude and practice, irrespective of the symptom profile of a particular patient, contributes to the unjustified wastes. Individualised prescribing or even three initial vials of some drugs to help save money which (Fabian-Therond, 2024) findings argued without jeopardizing care has a definite range.

Theme 7. Safety Concerns and the Risks of Advance Prescribing

The resources all indicate issues related to patient safety, especially when the drugs are ordered months or years before they are needed. According to research of Bowers et al. (2021) and Bowers et al. (2020), the longer the strong opioids and midazolam are kept in a home, the higher the chances are, of abuse or diversion. Moreover, the availability of such drugs may trigger the decrease in clinical reviews; the clinician will be less motivated to visit the patient with the presence of the already available in case box, which may result in failure to identify the reversible symptoms. The inquiry into the “Gosport War Memorial Hospital” is quoted as a warning of the dangers of prescribing to anticipatory syringe drivers with large dose ranges, that (Bowers et al. 2019) findings initiated at the will of third parties, (Au et al. 2022 who may have unknown skills to the prescriber.

Conclusion

The cumulative evidence of all the above studies shows that as much as anticipatory prescribing is pillar in UK community palliative care, it is an intervention that is complex, full of clinical, psychological and economic friction. However, it is an anxiety and clinical uncertainty management instrument, but its standard use in practical life, does not commonly consider the particular requirements and preparedness of the patients and their families. AP needs to support end of life, by better incorporating the professional judgment with the professional lived experience of the informal caregivers.

 

 

5. Conclusion

The five studies discussed together shed light on a dynamic and diverse landscape of anticipatory prescribing (AP) in end-of-life care in communities. It has always been shown that AP is a frequent practice with around 50-65% of patients with foreseeable deaths given prescriptions, but that its clinical efficacy has never been sufficiently supported. Antunes et al. (2020) disclosed the COVID-19 pandemic increased the rate of innovation, opening up new drug routes and caregiver administration opportunities beyond the traditional conventions. Bowers et al. (2020) have shown that GPs consider AP as a concrete measure to deal with uncertainty, but prescribe largely on professional intuition instead of solid clinical evidence, many weeks or months before it is expected. Bowers et al. (2021) affirmed the jarring variation in prescription timing, 0-12 days preceding death, and emphasised that standardised, as opposed to individualised, prescribing prevails in practice and poses a substantial amount of safety concern. The longitudinal patient/caregiver perspective presented by Bowers et al. (2022) was the first to present AP as a reassuring and disturbing experience, where informal caregivers often bear unidentified responsibilities in advocacy around timely drug administration. Morgan et al. (2023) determined that 85% of the money spent on prescribed medications was wasted, and Haloperidol, Cyclizine and Glycopyrronium made up a disproportionate portion of wasted money. Throughout the five studies, one common thread is evident: patient and family voice continues to be marginalized in prescribing, levels of administration set by nurses pose limitations to timely symptom management, and the evidence behind this popular practice is not robust enough to warrant the unthinking standardisation.

5.1 Implications for Practice

The results of these studies have significant implications in clinical practice in the end-of-life care in the community. To begin with, the pre-eminence of standardised AP – prescribing set amounts of four drugs irrespective of their likelihood of symptoms in a person – needs to be radically redefined. The NICE guidance proposes individualised prescribing, but clinical records and cost information continue to demonstrate a template-based, one-size-fits-all practice that creates a lot of medication wastage and possible safety risks to patients. In the case of antiemetics, clinicians should be more proactive in adjusting the prescription based on the expected symptom profile of a particular patient to minimize unnecessary antiemetic prescribing of Haloperidol and Cyclizine when nausea is not expected.

 

Second, the prescribing conversations need to be enhanced immediately in terms of its quality and depth. Bowers et al. (2022) established that patients and caregivers were often provided with ambiguous, clinician-directed conversations that were framed with the use of minimising language and the families looked up the information about medications online. Frank, compassionate discussions of dying, expected symptoms and the place of individual drugs is a clinical and ethical requirement, reconsidered as situations evolve.

Third, the direction of care to community nurses should be supported by the strong inter-professional communication system. GPs noted an increasing dependency on fragmented centralised contact systems at the expense of direct nurse relationships, which underlie safe AP. It is important to re-establish routine interdisciplinary team meetings and open lines of communication between GPs and community nurses. Lastly, the under-the-radar strain imposed on informal caregivers in terms of advocacy of drug administration, prescription logistics and symptom monitoring should be officially recognized and established with specific carer education, concise written instructions regarding the requirements to adhere to when administering drugs and available professional contact points that can be reached at any time of the day or night.

5.2 Recommendations

Hospital perspective: Hospitals must have strong discharge planning which includes timely AP prescribing when patients leave hospital environments to their communities, and share of electronic care plans across services. It is advisable that anticipatory syringe driver prescription is only issued after due individualised clinical evaluation considering evidence of safety risks and increased costs of wastage.

Nursing point of view: Community nurses should treat informal caregivers as skilled collaborators in care and use their observations of patient distress to make administration decisions – especially when patients are unable to self-report symptoms. Clinical assessment of the end-of-life should be regularly trained to the nurses to standardise administration thresholds and minimise differences in care quality. There should be regular provision of clear and written symptom criteria and ‘out of hours’ palliative care support lines.

Carer perspective: Informal caregivers need to be talked to proactively, honestly and repeatedly about the dying process, what to expect and the anticipated symptoms when medicines are given. Guidance on requesting drug administration, when and how to do so, and a named clinical contact would significantly decrease the navigational load that families are now bearing. Provision of emotional support in the aftermath of bereavement especially in cases where drugs were not administered or care was not provided systematically.

 

 

 

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