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Address correspondence to: Eleanor Wilson, PhD, MSc, BA, Nottingham Centre for the Advancement of Research in End of Life Care (NCARE), School of Health Sciences, University of Nottingham, Medical School, Queen's Medical Centre, Nottingham NG7 2UH, United Kingdom.
Nottingham Centre for the Advancement of Research in End of Life Care (NCARE), School of Health Sciences, University of Nottingham, Medical School, Queen's Medical Centre, Nottingham, United Kingdom
Nottingham Centre for the Advancement of Research in End of Life Care (NCARE), School of Health Sciences, University of Nottingham, Medical School, Queen's Medical Centre, Nottingham, United Kingdom
Nottingham Centre for the Advancement of Research in End of Life Care (NCARE), School of Health Sciences, University of Nottingham, Medical School, Queen's Medical Centre, Nottingham, United Kingdom
Nottingham Centre for the Advancement of Research in End of Life Care (NCARE), School of Health Sciences, University of Nottingham, Medical School, Queen's Medical Centre, Nottingham, United Kingdom
Increased life expectancy, technical advances in treatment and symptom control, and the extension of palliative care in community settings not only lengthen life but also make it possible for many patients to be cared for, and to die, at home. Moreover, death increasingly occurs in late old age and after a prolonged period of comorbidity and/or frailty. This has far-reaching consequences for the way that professional services are resourced and organized and for the informal carers who are often responsible for providing the greater part of patient care, including management of complex medication regimes.
Objectives
To explore the literature focused on family caregivers' (FCGs) experiences of medication management for patients being cared for and dying at home.
Methods
This literature review takes a critical interpretive synthesis approach to the review of 15 identified articles.
Results
Findings show that FCGs can struggle to manage medications for someone who is dying at home, yet there is an expectation that they will take on these roles and are often judged by professional standards. Five key themes identified particular issues around administration, organizational skills, empowerment, relationships, and support.
Conclusion
As increasing demands are placed on FCGs, there remains limited acknowledgment or understanding of the challenges they face, how they cope, or could be best supported. Alongside training, FCGs need access to 24 hours of support and medication reviews to rationalize unnecessary medications. Furthermore, the ethical challenges arising from administering medicines at the end of life also need to be acknowledged and discussed.
Technical advances in treatment and symptom control and the extension of palliative care in community settings not only lengthen life but also make it possible for many patients with life-limiting and terminal illness to be cared for, and to die, at home. Indeed, in the U.K. policy, drivers continue to encourage death at home, which is assumed to be the preference of the majority.
Office of National Statistics Statistical bulletin: National Survey of Bereaved People (VOICES): England, 2015: Quality of care delivered in the last 3 months of life for adults who died in England.
In England and Wales, 24.1% of the population currently die at home but, regardless of place of death, most patients spend much of their last year of life being cared for at home.
Caring for a dying spouse at the end of life: ‘It's one of the things you volunteer for when you get married’: a qualitative study of the oldest carers' experiences.
Alongside this aging, and often frail, population has been a reduction in social care and a slow but progressive shift in responsibilities from the state to informal support.
Furthermore, evidence shows that older people, particularly those with dementia, are more likely to make medication errors and have reduced adherence to their medication regime, impacting on the safe and effective use of the medication.
Developing a framework for a novel multi-disciplinary, multi-agency intervention(s), to improve medication management in community-dwelling older people on complex medication regimens (MEMORABLE)––a realist synthesis.
All these aspects have far-reaching consequences for the way that professional services are resourced and organized as well as for the informal carers who provide the greater part of patient care, including management of complex medication regimes.
In the U.K., 6.5 million people are providing informal care for someone, with 1.4 million of those providing more than 50 hours a week of unpaid care, and in England and Wales, 1.3 million carers are aged 65 or older.
Caring for a dying spouse at the end of life: ‘It's one of the things you volunteer for when you get married’: a qualitative study of the oldest carers' experiences.
Yet it appears to be assumed, by policy, professionals and carers themselves, that they will shoulder this responsibility. As increasing demands are placed on informal carers, there is little acknowledgment or understanding of the challenges they face and how they cope or could be best supported.
Effective symptomatic control of distress and pain is critical to excellent end-of-life care and supporting patients to remain at home.
Failure to control symptoms is a likely cause of crisis situations resulting in distressing and costly unscheduled care, including out-of-hours visits and hospital admissions.
The annual National Survey of Bereaved People (VOICES) consistently reports that pain in dying patients is considered to be least well controlled at home compared with other care settings.
Office of National Statistics Statistical bulletin: National Survey of Bereaved People (VOICES): England, 2015: Quality of care delivered in the last 3 months of life for adults who died in England.
identify the challenges family caregivers (FCGs) face in identifying and managing pain alongside common concerns about addiction, sedation, restricting pain control, and hastening death. The complexity of symptoms and the intensity of pain can increase as death approaches.
and increased sleepiness can be helpful signs of impending death. Yet, for others, symptoms such as pain, delirium, and agitation in the last days of life can be extremely distressing.
The Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) Scale: a measure for assessing caregiver exposure to distress in terminal care.
Understanding the role of nurses in the management of symptoms and distress in the last days of life.
in: Sterckx S. Raus K. Mortier F. Continuous Sedation at the End of Life. Ethical, Clinical and Legal Perspectives. Cambridge University Press,
Cambridge2013: 100-115
occur at every stage of prescription, supply, and use. Further to this, health care professionals (HCPs), including general practitioners (GPs) and the community nurses who are most directly involved in patient care, are reported to lack confidence, engagement, and training in managing terminal pain and other symptoms.
Interprofessional communication and coordination of services in the community is sometimes poor, particularly relating to accessing medicines out of hours.
Understanding the role of nurses in the management of symptoms and distress in the last days of life.
in: Sterckx S. Raus K. Mortier F. Continuous Sedation at the End of Life. Ethical, Clinical and Legal Perspectives. Cambridge University Press,
Cambridge2013: 100-115
References to community pharmacist involvement in managing end-of-life care medicines are rare, yet there is scope for much greater input and involvement of community pharmacists in supporting patients, informal carers, and HCPs to optimize the use of medicines in community care settings for those dying at home.
Therefore, patients and informal carers are often charged with managing a great number of medications, with different routes of administration, prescribed for a variety of reasons, and often involving powerful drugs with a high risk of adverse side effects.
identified that seven days before death the mean number of medications being taken by patients was nine. Importantly on the day of death, 27% of patients used a preventative medication. It is becoming clear within the literature that much greater understanding of polypharmacy is needed to understand why prescribing focus may not shift from the active management of comorbidities and chronic disease with such preventative medications to the provision of comfort care and effective control of symptoms at the end of life.
Understanding the continuation of potentially inappropriate medications at the end of life: perspectives from individuals and their relatives and physicians.
highlighted issues such as not wanting to diminish patients' hope, being unwilling to have difficult end-of-life conversations, and an emphasis on prescribing being the role and responsibility of a lead physician, as reasons for not undertaking the rationalization of unnecessary medications.
The literature identifies the complexities of medication prescribing and use in end-of-life care, predominantly for HCPs. Given the challenges experienced by professionals, we might expect patients and FCGs to find the prospect of medication management daunting. As drivers to support people to live at home for longer and technologies to sustain life increase, informal carers are facing growing demands in the form of medication management. However, little is known about how families respond to these demands, far less how well they execute them. This article presents a critical interpretive synthesis (CIS)
of qualitative research findings reporting FCGs' (The term family caregivers [FCGs] is taken to include others who play a supporting role, such as friends and neighbors) experiences of managing medicines for severely ill patients being cared for and dying at home. The article seeks to explore how FCGs can best be supported throughout a critical experience of managing dying and the many emotional and practical demands and challenges that this entails.
To explore FCGs' experience and perspectives of managing medication for someone who is being cared for and dying at home.
Review Methodology
This review is a synthesis of the available literature specifically focused on empirical studies of FCGs' views and experience of managing medications for a patient who is at the end of life. It draws on the CIS approach as identified and explored by Dixon-Woods et al.
Patient, caregiver, health professional and researcher views and experiences of participating in research at the end of life: a critical interpretive synthesis of the literature.
: p. 124) bodies of evidence, predominantly made up of qualitative studies. A systematic approach was adopted to searching the literature using explicit search strategies for transparency and replicability. The searches adhered to specific inclusion criteria, and data extraction procedures were conducted by E. W., G. C., and K. P. (the study team).
Inclusion and Exclusion Criteria
Included articles focused on four elements:
•
the views of FCGs
•
involved in managing medications
•
for an adult relative/friend who is dying
•
in the home environment.
No specific country of origin was specified. Articles reporting both qualitative and quantitative empirical studies were included. A date limit of articles published from 2000 was imposed to maintain current relevance.
Exclusion criteria:
•
does not focus on the views of FCG
•
does not focus on the role of FCG in managing medications
•
inpatient care
•
does not focus on care of patients who are at the end of life
•
patient is younger than 18 years
•
education program design or content
•
published before 2000.
Identification of Articles
Initial keywords and databases were generated by the first author based on existing knowledge of the topic, current literature, and scrutiny of a relevant sample article for key words. These were then refined in collaboration with the study team. Eight key words were initially identified (Medicin* manage*, manag* medication*, end of life, palliative care, home environment, community, family carer*, and carer). These key words were then combined to identify the most appropriate citations across five central databases ([email protected] Full Text, MEDLINE, EMBASE, AMED, and PsychInfo). These combination searches resulted in 213 citations once duplicates were removed (Fig. 1; see for a flowchart of the process). Endnote, version X8, software was used to manage references electronically (Clarivate Analytics, Philadelphia, PA). A filtering process was undertaken by E. W. to ensure that the studies fulfilled the inclusion criteria. This consisted of three stages and was implemented on the basis of first reading titles, then abstracts, and finally the full text of articles.
After a review of titles, 29 articles remained. A snowball search using find similar links within the databases and articles already known to the study team identified a further 13 relevant articles (n = 42 included). After abstract review, 24 were excluded (n = 18 included). A full-text review excluded a further eight articles (n = 10 included). Hand searching of reference lists was undertaken for each of the remaining articles that identified a further 10 articles to be reviewed. Of these additional articles, four were included. After the initial review of titles was undertaken by E. W., all further articles were reviewed by the study team to verify the process and reach a consensus about which articles to include. Only one article was identified as borderline, and after discussion within the team, this was subsequently excluded.
As part of this iterative CIS methodology, these discussions also highlighted a need to revisit the search terms and undertake a further search to try to identify articles on the topics of death rattle and those more directly focused on anticipatory medicines. Search terms were identified as “death rattle”/“noisy breathing”/“antimuscarinic” combined with family carer*/family caregiver* and “end of life” (n = 73). A further search for the terms Anticipatory medic*/“as needed” medic*/“just in case” medic*/“emergency medic* kit” combined with an “end of life” resulted in 82 results. However, after removal of articles already identified, review of titles, and just two abstracts, all were excluded by the team. In response to reviewers' comments, an additional search was conducted to incorporate the term breakthrough pain. Between this and an update of the previous review to identify any new work, 26 articles were identified. As part of the iterative CIS approach, we clarified the inclusion criteria and bounded our search by date and empirical articles. Subsequently, seven of the 26 additional articles were duplicates, 14 were excluded after reading the abstract for not meeting the inclusion criteria, and a further five following appraisal of the full text, leaving one additional article to be included in the review. A further hand search of the references from that article identified seven further articles, all of which were excluded, resulting in a total of 15 articles included in the review. All included articles were additionally reviewed by N. T. during development of initial drafts of the article to check for valid representation of the articles within the review.
Nine articles were from studies conducted in the U.S., three from Australia, with one each from the U.K., Canada, and Ireland. All articles reported recruiting participants via palliative care or home hospice teams. Six stated participants were/had been caring for someone with a cancer diagnosis, four stated a range of conditions (some including cancer), and the rest did not identify the patient's diagnosis. Where it was specified, all articles focused on the management of pain and the use of pain medications (Table 1; see for details on all these aspects). It is notable that in the U.S. and Australia, it is more common for FCGs to be involved in administering as-needed medications. Although in the U.K., studies are underway to assess the feasibility of this approach, this remains rare. These types of medications have a variety of different names, including as-needed medication, end-of-life medication, just in case medications, emergency medication kit, and palliative medications kit. In the U.K., the term anticipatory medication is used, and we will continue with this term. There was often no clear definition of the terminology used. We understand these terms to refer to medications prescribed by a GP or hospital and dispensed in advance to be stored in the patient's home/care home. These can then be used by visiting qualified health professionals as and when needed, particularly out of hours, to treat symptoms, such as pain, nausea, and agitation at end of life.
However, in some articles, it was not clear if it was these anticipatory medicines being referred to or whether medication management at the end of life was approached more broadly. It is also important to note that in the U.S., the term hospice is used to refer mainly to a home-based community service, allowing FCGs to be directly involved in care and medication management. In the U.K., the term hospice usually refers to an inpatient unit.
Table 1Articles Included in the Review
No.
Article
County
Number of FCG
Data Collection Methods
Key Findings
1
Anderson, B.A., & Kralik, D. (2008). Palliative care at home: carers and medication management. Palliative and Supportive Care, 6, 349–356
Australia
n = 14
Semistructured interviews with FCG
Patient diagnosis not stated
Focused on subcutaneous end-of-life medications being drawn up in advance and being left in the home for FCG to administer as required. FCG supported by 24 hours of palliative care phone access. Themes identified as a desire to be at home, capacity to respond to symptoms, security and ethical concerns, empowered in the career role, and personal fulfilment
2
Chi, NG, Demiris, G, Pike, KC, Washington, K, Parker Oliver, D. Pain management concerns from the hospice family caregivers' perspective. American Journal of Hospice & Palliative Medicine, 35(4):601–611
U.S.
n = 15
Secondary analysis of telephone survey interviews with FCG
Range of patient diagnoses
Participants had taken part in a wider study and in several telephone interviews. About 15 interviews were re-analyzed using Kelley's “Informal Hospice Caregivers Pain Management Concerns” framework. Findings confirmed all the Kelley's themes but not some of the subthemes because of the small sample. The authors conclude that future educational material should be informed by this framework to improve support for caregivers managing pain for patients living at home
3
Israel, F., Reymond, L., Slade, G., Menadue, S., & Charles, M.A. (2008). Lay caregivers' perspectives on injecting subcutaneous medications at home. International Journal of Palliative Nursing, 14, 390–395
Australia
n = 14
Semistructured interviews with FCG pre- and postbereavement
Patient diagnosis not stated
Focused on subcutaneous end-of-life medications being drawn up in advance and being left in the home for FCG to administer as required. Support provided by 24 hours of phone access and home visits. FCG identified issues around having to do it to keep the person at home, timing, overmedicating/under medicating, conflicts with family members, confidence, impact of tiredness and emotional burden, and access. In interviews, postbereavement, FCG reported being empowered by the experience and pleased to have contributed to their family member staying at home
4
Joyce, B.T., Berman, R., & Lau, D.T. (2014). Formal and informal support of family caregivers managing medications for patients who receive end-of-life care at home: a cross-sectional survey of caregivers. Palliative Medicine, 28, 1146–1155
U.S.
n = 120
Computer-assisted telephone interviews with FCG of older people receiving hospice care
Patient diagnosis not stated
Involved caregivers who had medication responsibility for a home hospice patient aged 60 and older. Measured the formal and informal supports provided to FCG to manage medicine. About 39% reportedly had no support. They were less likely to have support if they were of an ethnic minority and low economic status. A greater number of medications was not associated with more support
5
Kazanowski, M. (2005). Family caregivers' medication management of symptoms in patients with cancer near death. Journal of Hospice & Palliative Nursing, 7, 174–181
U.S.
n = 17
Interviews with female FCGs of patients with a cancer diagnosis
Findings show FCGs often take on the role as there were no one else. Expressed fears of giving too much medication or at wrong time. Many had preconceptions of morphine; however, relief of suffering became dominant at end. Overall seen a meaningful and important experience and not burden
6
Kelley, M., Demiris, G., Nguyen, H., Oliver, D.P., & Wittenberg-Lyles, E. (2013). Informal hospice caregiver pain management concerns: a qualitative study. Palliative Medicine, 27, 673–682
U.S.
n = 29
Content analysis of data obtained as part of a clinical trial of 3–4 interventional session and an exit interview with FCG of patient with a cancer diagnosis (n = 87 interviews)
Focus on pain and use of pain medications. Illustrates a number of issues for carers around being able to give medications. May be limited by physical, cognitive, education/literacy level, as well as own belief and self-confidence. Identified as struggling to achieve the pharmacological and symptom knowledge needed to correctly assess and administer medications. As well as having limited organizational skills to track and record medications
7
Lau, D.T., Berman, R., Halpern, L., Pickard, A.S., Schrauf, R., & Witt, W. (2010). Exploring factors that influence informal caregiving in medication management for home hospice patients. Journal of Palliative Medicine, 13, 1085–1089
U.S.
n = 23
Two articles from the same study
Semistructured interviews with 23 FCGs, assisting a patient aged 60 and older with a range of diagnoses and at least one hospice prescribed medication and 22 home hospice workers
FCGs and hospice workers generally agreed on the types of issues that hinder and facilitate medication management. Knowledge and skills may not be enough, have to factor in social context and relationship dynamics. Being able to deliver effective pain relief can be affected by limited understanding of opioids. Cognitive and physical impairments and competing responsibilities also have an effect on FCGs' abilities to effectively manage medications
8
Lau, D., Kaspers, J., Hauserm J, Berdes, C., Chang, C., Berman, R., et al. (2009). Family caregiver skills in medication management for hospice patients: a qualitative study to define a construct. Journal of Gerontology: Social Sciences, 64 (B), 899–807
U.S.
n = 23
Two articles from the same study
Semistructured interviews with 23 FCGs, assisting a patient aged 60 and older with a range of diagnoses and at least one hospice prescribed medication and 22 home hospice workers
Identified skills required for successful medication management by FCG: teamwork, organization, symptoms knowledge, medication knowledge, and personhood
9
Letizia, M., Creech, S., Norton, E., Shanahan, M., & Hedges, L. (2004). Barriers to caregiver administration of pain medication in hospice care. J Pain Symptom Manage, 27, 114–124
U.S.
n = 112
Survey of caregivers including FCG (74%), paid home caregivers (14%), and nurses (12%). About 64% of patients had a cancer diagnosis
Study highlights caregivers' concerns about doing something wrong, giving wrong amount. However, paid caregivers were more likely to have these concerns, as were male or Asian caregivers. Caregivers also reported negative associations with morphine, struggling to know when to give medication, understanding the route of medications and managing family conflict about medications
10
Mehta, A., Chan, L.S., & Cohen, S.R. (2014). Flying blind: sources of distress for family caregivers of palliative cancer patients managing pain at home. J Psychosoc Oncol, 32, 94–111
Canada
n = 24
Secondary analysis of interviews with FCG of patients with a cancer diagnosis
Focus on cancer pain management. FCGs felt overwhelmingly responsible, unprepared, unsupported, and found it hard to see someone in pain. Authors conclude that FCGs are at risk of psychological distress, which needs to be understood by health care professionals to tailor interventions
11
Parker Oliver, D, Wittenberg-Lyles, E., Washington, K., Kruse, R.L., Albright, D.L., & Baldwin, P.K. (2013). Hospice caregivers' experiences with pain management: “I'm Not a Doctor, and I Don't Know if I Helped Her Go Faster or Slower”. Journal of Pain and Symptom Management, 46, 846–858
U.S.
n = 38
Structured interviews with bereaved FCGs of home hospice patients recruited as part of larger study
Patient diagnosis not stated
Study focuses on medications for the management of pain. Findings are reported in themes around administration of medications, the side effects, how pain is assessed, and the lasting memories created by positive and negative experiences
12
Payne, S., Turner, M., Seamark, D., Thomas, C., Brearley, S., Wang, X., et al. (2015). Managing end of life medications at home-accounts of bereaved family carers: a qualitative interview study. BMJ Supportive & Palliative Care, 5, 181–188
U.K.
n = 59
Interviews with bereaved FCGs of patients older than 50 years who died at home from cancer or other nonmalignant conditions
FCGs were taking primary responsibility for drug administrations and storage with little support from professionals. FCGs dealt with complex medicine regimes and had concerns about giving correct and timely dosages and the use of morphine. They often lacked confidence and education to do this. Many also reported on the symbolic significance of syringe drivers
13
Rosenberg, J.P., Bullen, T., & Maher, K. (2015). Supporting family caregivers with palliative symptom management: A qualitative analysis of the provision of an emergency medication kit in the home setting. American Journal of Hospice & Palliative Medicine, 32, 484–489
Australia
n = 18
Telephone interviews with bereaved FCGs
Patient diagnosis not stated
Focus on emergency medication kits (EMKs—similar to anticipatory medicines) rather than wider medicines management. The EMK allows FCGs to administer injections, but some did not feel comfortable doing so. FCGs cited issues around storage, timing of administering medications, their confidence in managing medicines effectively, and fears of overmedicating the patient
14
Sheehy-Skeffington, B., McLean, S., Bramwell, M., O'Leary, N., & O'Gorman, A. (2014). Caregivers Experiences of Managing Medications for Palliative Care Patients at the End of Life: A Qualitative Study. American Journal of Hospice & Palliative Medicine, 31, 148–154
Ireland
n = 16
Three focus groups with bereaved FCG of patients predominantly with a cancer diagnosis
Study reports on a number of issues around when to give medications, the number of medications, alongside a lack of understanding of what the medications were for and their side effects. However, FCGs reported feeling empowered by taking on role, although disagreements among family members were an additional train. Many expressed being open to giving medication subcutaneously. Some reported issues with being able to access medications from pharmacies. The authors recommend written information and deprescribing where possible to support FCGs in this role
15
Tjia, J., L, E., Clayton, M.F., Lemay, C., & Reblin, M. (2015). Managing medications during home hospice cancer care: the needs of family caregivers. Journal of Pain and Symptom Management, 50, 630–642
U.S.
n = 18
Secondary analysis of recorded home hospice visits with FCG and patients with a cancer diagnosis
Analysis focused on identified examples of Lau's five skills criteria: teamwork, organization, symptoms knowledge, medication knowledge, and personhood. Medications skills were most commonly observed followed by symptom management, team working, organizational and personhood skills. Conclusions suggest that interventions should be tailored to assess FCGs' skills in these areas
Once the inclusion of the 15 articles (Table 1) had been agreed by the study team, analysis was undertaken to draw out recurring themes. Dixon-Woods et al.
suggested a CIS focus on the development of concepts and theories rather than exhaustive summary of all data (p. 37). We therefore undertook a process of reading and re-reading the articles to undertake coding of the texts, which subsequently allowed us to generate themes based on recurring issues and patterns in the findings reported in the studies. We remained critical of the way in which the issues had been presented in the literature although no formal appraisal of study quality was performed in line with the CIS approach to interpret rather than aggregate the data provided. These elements were again then reviewed and discussed by the study team, and a table of themes and subthemes drawn up with reference to the relevant studies. For the quantitative studies included, findings that illustrated and supported the identified themes were amalgamated.
Findings
Five key themes were identified: administration, organizational skills, empowerment, relationships, and support.
Administration
Administration of medications was reported as a key aspect of managing medicines by all the studies in the review. Indeed Lau et al.
suggested that to understand and respond to patient need, a theme they refer to as personhood, FCGs must develop both symptom and medication knowledge (also see Ref.
classified symptom knowledge as encompassing the ability to recognize and respond to common symptoms at the end of life. They identified medication knowledge as including the ability to apply the basics of pharmacology, including understanding the difference between generic and brand names, time-to-peak drug effect, the difference between short-acting/fast-release and long-acting/extended-release drugs, and the danger of double dosing (
show that FCGs often struggle with these types of knowledge and skills. As such, they often reported fears of overmedicating and undermedicating patients and struggled to know when to give medications and how to administer them.
Concerns about the overmedication of patients were linked to perceptions of duty in wanting to manage pain appropriately in order for the patient to remain at home, coupled with preconceptions about the use of opioid drugs such as morphine for pain relief.
Although FCGs agreed to the use of morphine, they often attached negative connotations to it; particularly perceiving morphine as a signal for the end of life, hastening death, and expressing concerns about giving the last injection.
also cited underlying anxieties about the side effects of morphine, such as sedation or confusion. Such side effects were perceived by some of 59 participating bereaved FCGs of Payne et al.
several FCGs expressed anxiety that they may have unnecessarily withheld medications. Both themes of overmedicating and undermedicating patients were paralleled by one of timing. All FCGs in the study by Israel et al.
reported insecurity and indecision about the appropriate frequency and timing of giving subcutaneous medications. FCGs grappled with whether to consistently use medication to keep pain at bay or to wait for breakthrough pain to administer medications.
Further issues with administration were cited by FCGs with regard to how medicines were to be administered. For example, an FCG in one study reported being unable to give medications because the increments of the dropper did not match the written prescription given by the doctor (
study cited the sheer volume of medications as problematic. These often had to be given at specific times, with or without food, and in different combinations. These issues led FCG participants to suggest that health professionals rationalize unnecessary medications and remove them from prescriptions at an earlier stage to prioritize the most important medications.
The complexity of these elements combined with FCG fatigue, low literacy, limited English proficiency, and physical infirmities, such as poor eyesight, arthritis, reduced mobility, and strength,
all contribute to making the administration of medications at the end of life extremely challenging for FCGs.
Organizational Skills
FCGs often identified organizational skills and techniques, which they applied to effectively administer, track, and monitor the effects of the medications they were managing. In four studies,
Supporting family caregivers with palliative symptom management: a qualitative analysis of the provision of an Emergency Medication Kit in the home setting.
FCGs reported putting a number of systems in place to help them remain organized particularly when they were tired, stressed, and had difficulty retaining information.
reported that fatigue impeded caregivers ability to make thoughtful decisions and increased the chance of medication errors including skipping or giving incorrect dosages (p. 1087). In the study by Kazanowskis
of 17 female FCGs of patients with cancer, respondents reported using practices such as prefilled syringes and medication boxes, alongside written schedules or diaries to enhance their confidence and efficiency and decrease the time spent undertaking these tasks. The Australian study by Anderson and Kralik
of 14 FCGs suggests that FCGs were keen to accurately record and administer medications and were encouraged by HCPs to maintain details of the medications in computer spreadsheets and handwritten notes. These were subsequently reviewed by palliative care professionals visiting the home. However, findings in several other studies
described findings from multiple interviews with 29 FCGs of patients with cancer in the U.S. It focuses on the use of pain medications and illustrates a number of issues for carers. The authors describe FCGs' lack of organizational skills, particularly when they cannot recall when or how much pain relief had been given. They also cite an inability to store medications safely and a failure to dispose of out-of-date medications.
Importantly, when symptoms were not controlled by the medications administered by the FCG, or a hospital admission was required, some FCGs reported feeling disempowered and often considerably distressed.
This is a significant finding, although not frequently reported in the included studies we feel that it is worthy of note in this CIS review.
Relationships
Several of the articles cited relationship dynamics as having an impact on the abilities of FCGs to optimize the management of medicines. Both relationships between families and HCPs
with 24 FCGs revealed that most FCGs did report supportive and collaborative relationships with HCPs. However, access to information for those who did not was limited, and therefore, their knowledge about pain control was compromised. When FCGs were unable to get their concerns addressed by HCPs, they reported feeling distressed and unsupported (also see Ref.
). Study participants from countries where health insurance was needed to access and cover the costs for medications also reported issues around relationships with insurance companies, pharmacies, and hospice services when prescribed medicines could not be accessed or paid for.
with 23 FCGs and 22 hospice workers in the U.S. cited teamwork as one of the five key themes from their findings. This concept of teamwork incorporated the ability of individual respondents to communicate effectively with home hospice and care providers as well as other FCGs. Findings from the study show that to be perceived as good communicators, FCGs talked about being prepared for meetings, asking questions, making notes of instructions, and keeping records to show to HCPs
Supporting family caregivers with palliative symptom management: a qualitative analysis of the provision of an Emergency Medication Kit in the home setting.
). They also discussed the importance of knowing when to contact professionals for further help and support when a patient was experiencing uncontrolled symptoms.
also included the coordination of other FCGs. When multiple FCGs were involved, this could result in tensions among family members and potential drug errors if medication information was not shared within families. The authors cite an example given by a hospice worker: an FCG gave medication to the patient but did not share this information with another family member, who subsequently gave the dose again resulting in the patient having double the amount of medication (
: p. 803). A further area of tension between family members was around differing views about how much and when to give medications. Some FCGs reported having different perceptions about what levels of pain or distress might be acceptable before administering medication.
Formal and informal support of family caregivers managing medications for patients who receive end-of-life care at home: a cross-sectional survey of caregivers.
indicated the potential scale of this issue in their findings that 39% of the 120 FCGs participating in computer-assisted telephone interviews reported no additional formal or informal support in terms of managing the patients' medications in the home.
Formal and informal support of family caregivers managing medications for patients who receive end-of-life care at home: a cross-sectional survey of caregivers.
Furthermore to this, only 30% had formal support (classed as a privately hired caregiver administering medications) and 31% informal support (classed as another family member who assists with patient care) with 7.5% having both types of support in place.
Formal and informal support of family caregivers managing medications for patients who receive end-of-life care at home: a cross-sectional survey of caregivers.
the two sets of 14 FCGs interviewed cited 24 hours of support via telephone and in person as vital to FCG confidence with the use of medications. This access to HCPs provided timely advice and was used to support the decisions made by family members and hence their general ability to fulfill their caregiving role. Having medications drawn up in advance and being given written information was also reported to be a source of support for some FCGs.
highlights, although information is important in the early stages, this must continue to be forthcoming and tailored to new situations and needs as they arise.
Discussion
Although a range of issues was raised by the FCGs participating in the reviewed studies, five core themes were identified: administration, organizational skills, empowerment, relationships, and support. A major geographical difference between the studies was that FCGs regularly undertook the subcutaneous administration of anticipatory medications in the U.S. and Australia but rarely did this in the U.K. This was often via an already placed access line and using predrawn medications (although this was not clear in all the articles). However, greater involvement of FCGs in the administration of syringe drivers and other procedures is clearly the direction of travel in the U.K., and some small-scale trials have already taken place
Wilkinson C. CARer-ADministration of as-needed sub-cutaneous medication for breakthrough symptoms in home-based dying patients: A UK study (CARiAD). Bangor University. Research in progress, 2018. Available at: https://www.journalslibrary.nihr.ac.uk/programmes/hta/151037/#/. Accessed August 29, 2018.
to assess the feasibility of this approach in the U.K. In some areas, FCGs can be assessed and trained to undertake this task, although it is difficult to know the scale of this practice across the U.K.
Bradford and Airedale Teaching and Primary Care Trust. Subcutaneous drug administration by carers (adult palliative care). Procedure guidelines by Bradford and Airedale Teaching and Primary Care Trust, 2006. Available at: https://www.palliativedrugs.com/download/SubcutaneousDrugAdministrationbyCarers.pdf. Accessed October 1, 2018.
reported that many FCGs took on the role by default rather than choice, which raises the question of whether FCGs may feel that this responsibility is imposed on them. In the U.K., very few FCGs are trained to give anticipatory medications at the end of life, and one of the key stipulations of the National Health Service policies that do allow FCGs to take on this extended role is one of choice.
comments, it must be ensured that relatives do not feel coerced either by a loved one's wish to die at home or by under-resourced community services. Thus, in providing the best possible care for dying patients,
Patient empowerment, what does it mean for adults in the advanced stages of a life-limiting illness: a systematic review using critical interpretive synthesis.
it is interesting that this theme did not feature prominently in these empirical studies, a finding that merits further investigation in future research.
Some of the articles reviewed here pose a question in terms of responsibility for medication management at the end of life. There is an apparent assumption, on the part of both FCGs and HCPs, that FCGs will take on the task and responsibility for the management of medicines in the home. Some FCGs kept records of medications given and notes from meetings with HCPs.
FCGs are described as lacking in skills, failing, and having an inability or insufficient skills to undertake tasks. This type of language suggests that FCGs are being judged by quasi-professional standards and leads us to question if the expectations placed on them are realistic? It also raises a question of what checks could and should be in place to ascertain that FCGs are, indeed, managing medicines adequately in the home, and that they feel sufficiently supported in this endeavor. Saltmarsh
highlights that there may be an adverse psychological impact resulting from FCGs' sense of failing to manage at home. Rather than positive feelings of empowerment, FCGs may experience negative consequences for bereavement and long-term grief if the dying person goes into hospital or dies at home in distress.
These consequences must be considered alongside the exigencies of long-term caring and the associated exhaustion, isolation, and stress, which can have negative impacts on grief.
Issues of responsibility and the danger of negative impacts are intertwined with an understanding of family relationships. Many may have complex and problematic relationships before the need to deal with medicines for a dying family member arises. The assumption that family members all rally round to support the dying person is not always borne out in practice. Although pressures on families can bring them closer, they can also accentuate issues and provide additional sources of conflict when family members do not agree with one person's approach to the management and administration of medications. In addition, not all families will have the social and personal skills to communicate effectively with HCPs or to coordinate the, often multiple HCPs and services involved in end-of-life care to achieve teamworking of Lau et al.
The reviewed articles highlight the limited understanding of this issue as, beyond some brief examples, the impact of family conflicts were not addressed. Again, Saltmarsh
raises a legitimate concern about how families respond to the key relative responsible for administering medications after the patient has died. Further to this, the dynamic between families and health professionals warrants further exploration. Studies of Faull et al.
highlight the need for communication and trust between health professionals in order for the process of anticipatory prescribing to be effective in community palliative care. Such findings may be relevant for the management of medicines at the end of life more generally. GPs have been reported to be resistant to writing prescriptions when they were not reassured that they would be implemented correctly by community nurses.
Again, this raises issues about the expectations and responsibilities placed on FCGs when HCPs themselves struggle with these aspects of care provision and working out a viable professional division of labor.
Health professionals' support for FCGs appeared crucial to success and family confidence in medication management.
refer to 24 hours of telephone support provided by specialist palliative care services. Indeed in the U.K., access to 24 hours of telephone support from specialist palliative care would be a fundamental component in endorsing an FCG to be trained to administer subcutaneous injections in the home at the end of life.
Bradford and Airedale Teaching and Primary Care Trust. Subcutaneous drug administration by carers (adult palliative care). Procedure guidelines by Bradford and Airedale Teaching and Primary Care Trust, 2006. Available at: https://www.palliativedrugs.com/download/SubcutaneousDrugAdministrationbyCarers.pdf. Accessed October 1, 2018.
What is less clear is what support is in place for FCGs providing ongoing management and administration of medications that are not part of Core 4 anticipatory medications.
All the issues raised by FCGs in the reviewed articles echo those expressed by registered nurses who took part in a study to explore their roles in anticipatory prescribing in the U.K.
Nurses reported finding the administration phase of the process particularly ethically challenging. They expressed concerns about overmedicating and undermedicating patients, giving the last injection, and the timing of starting anticipatory medications.
to be necessary for recognizing and responding to common symptoms at the end of life. A number of nurses reported difficulties in distinguishing between symptoms of pain and agitation, often resulting in a trial-and-error approach to administering medications.
A comparison of the findings of this review of FCGs with this previous study of nurse roles in anticipatory prescribing highlights the enormity of the expectations placed on FCGs when they are undertaking tasks that trained health professional sometimes struggle with. The study by Wilson et al.
indicated that despite professional training many of the ethical issues linked to end-of-life medication administration remain. Findings illustrate that it was only when nurses developed considerable experience or had additional palliative care training that these issues diminished.
So, although the practical issues remain an essential area of training for FCGs undertaking the management of medications in the home, HCPs may also need to hold conversations about the ethical challenges they may face when administering medications at the end of life.
This review has highlighted a number of potential implications for practice alongside an underlying concern about whether FCGs have any choice, in practice, about whether they take on this caring role. There are a number of moral consequences for FCGs if they choose not to take on this role, and practical implications for services if FCGs do not want to, or are not able to, administer medications. Therefore, there is a broader question for policy and practice concerning whether we should continue to place this expectation on FCGs. Implications for practice, therefore, might be to take on effective training and ongoing support of FCGs alongside a greater emphasis on enabling HCPs to effectively administer medication to people who want to remain at home, thereby reducing the expectations on FCGs.
This review has also demonstrated that when FCGs do want to take on a role of administering medications at the end-of-life access to written and telephone information, and advice and home visits from HCPs, is essential for appropriate information and support. Further to this, medication management at the end of life may need to be simplified by health professionals actively rationalizing all unnecessary medications. In addition to such practical issues, discussions about the ethical implications FCGs may face and the potential to debrief with health professionals after medications have been given and/or the death has occurred may be required. Family makeup and relations will have an impact on whether an FCG is suitable to undertake the task of managing and administering end-of-life medications. Closer attention to the allocation of professional roles and responsibility in prescribing medicines for dying patients and proactively supporting families as well as supervision of how adequately medicines are being administered within the home is also warranted.
The knowledge base in this field is limited by a focus on pain management, the FCGs of patients with a cancer diagnosis, and a lack of demographic heterogeneity. Most of the work has been conducted in the U.S., which may limit its transferability to countries with differing health care models, such as the U.K. Therefore, although this review has demonstrated that there is a growing understanding of the challenges faced by FCGs managing medications for someone with serious illness who is being cared for at home, there is a need to build a clearer picture of these challenges within the context of increasing life expectancy, multiple comorbidities, advancing technology, and financial pressures on service providers and families themselves.
Disclosures and Acknowledgments
This work is supported by the National Institute of Health Research (Health Services & Delivery Research project: 15/70/101). The authors declare no conflicts of interest.
Disclaimer: The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.
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Patient empowerment, what does it mean for adults in the advanced stages of a life-limiting illness: a systematic review using critical interpretive synthesis.
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