In England, more than half a million people die every year and at any one time, many are living with a life expectancy of less than a year (NHS England, 2021). The 12 months leading to death are often referred to as the period ‘approaching the end-of-life’ (National Palliative and End of Life Care Partnership, 2021). As the population ages and people live longer with multiple long-term conditions, the number of people needing palliative care in this period is set to rise by at least 25% in the next two decades (Etkind et al, 2017). Much of this care will be provided in the community, at patients' homes, and will be delivered by nurses. Many patients also express a preference to die at home. There is evidence to suggest that during the COVID-19 pandemic, the proportion of people expressing a wish to do this increased, because they did not want to be separated from family and friends and feared being hospitalised (Oluyase et al, 2021). This brought to the fore the important role of community-based palliative care. The recently published Ambitions for Palliative and End of Life Care report (National Palliative and End of Life Care Partnership, 2021) reminds healthcare workers that most staff provide care for people approaching death, and therefore palliative care is not just the province of palliative care specialist nurses – all community-based nurses have a role to play. Phillips et al (2020) support this view and assert that all nurses should be able to assess and manage common palliative care symptoms (including anxiety and depression), engage in discussion about prognosis, treatment goals, distress and suffering, as well as advance care planning preferences.
Medicines are a critical element of managing palliative care during the last 12 months of life. They are important for the control of symptoms, notably pain, and are also often required for managing the side-effects of opioid analgesics prescribed for pain. Other symptoms that may require medicines management include anxiety, depression, nausea and vomiting, breathlessness and oral problems. New medicines may need to be prescribed for new symptoms, existing medicines may need titration as symptoms evolve, other medicines may need to be discontinued because of unmanageable side effects and new medicines prescribed in their place. Patients may experience rapid changes in symptoms and, together with family or friends caring for them at home, are often physically and emotionally vulnerable. Evidence suggests that many patients will experience unplanned hospital admissions during the last year of life: on average, people in the last year of life are admitted to hospital 2.28 times and have over 30 bed days in hospital (Bardsley et al, 2013). The provision of medicines in the home can prevent the use of emergency services and hospital admission as well as alleviate pain and distress. This combination of rapidly emerging high need and medicines' potential for enhancing symptom control and cost-effectiveness through reduced use of emergency services places prescribers in an important role and challenges healthcare services to enable nurses and other health professionals to be agile in responding to these needs. Research has highlighted that patients and their family or friends caring for them at home can find obtaining medicines time-consuming and burdensome (Campling et al, 2017). Campling et al (2017) investigated self-management of palliative care medicines in the home. End-of-life patients and carers interviewed in this study reported that the process of accessing prescriptions, dispensing and obtaining information about medicines was often a difficult and lengthy process.
Evidence also suggests that there are problems with accessing medicines out-of-hours: in an Australian study, Kuruvilla et al (2018) found difficulties being experienced by both palliative care service users and health professionals, especially out-of-hours. In the UK, Williams et al (2019) analysed patient safety incident reports related to community palliative care patients and found more than half of the reports concerned medication incidents. One-third of these described problems with timely access to medicines, including accessing timely advice and/or assessments and inefficient communication.
Evidence suggests nurse prescribers can make a difference to the patient access experience, including out-of-hours. A recent systematic review (Ogi et al 2021) on experiences of access to palliative care medicines included one small study (Latham and Nyatanga, 2018) evaluating the impact of specialist palliative care nurses. The study found that these nurses reported that they were able to quicken access to medicines, especially at weekends, leading to better symptom control and quality of life for their patients. Their ability to prescribe prevented the need for calling an out-of-hours doctor, which could take several hours. In a large-scale survey of health professionals providing community-based palliative care (Latter et al, 2020), positive views of the impact of nurse (and pharmacist) prescribers on access to medicines was reported. Just under half of the participants considered that nurse prescribing ‘always’ or ‘often’ had a positive impact on medicines access. However, the survey also illuminated that many specialist palliative care nurses, as well as generalist community nurses, were not trained as prescribers, citing the cost of training and lack of employer/colleague support as the main reasons for this. In addition, the majority of nurses who were prescribing could not utilise electronic prescribing systems, needing to rely instead on writing scripts by hand. These factors are likely to delay patients' access to medicines if nurses have to contact medical staff to issue prescriptions.
Against a backdrop of a declining number of GPs and primary care delivered by a multi-professional workforce, support is needed to train nurses to prescribe in this important area. Once qualified as prescribers, whether NHS- or hospice-employed, they need equity of access to the same electronic systems that their GP colleagues can use, to reflect and support the important contribution that they make to palliative care delivery.
All nurses also have an important role in advising patients about how and who to contact if they require advice about symptom management and access to medicines. It is recommended that palliative care services include patient access to 24/7 prescribing and dispensing, as well as that specialist advice should be available out-of-hours (National Palliative and End of Life Care Partnership, 2021). Many community pharmacies are commissioned by clinical commissioning groups or NHS regions to provide a core stock of palliative care medicines, including availability out-of-hours. Clear signposting of patients to the most appropriate, local, first point of contact in-hours and out-of-hours is vital.
Anticipatory prescribing, in advance of need, especially if symptom escalation can be predicted and if this is likely to occur out-of-hours, is another strategy that nurse prescribers should consider judiciously employing to ensure good access to medicines when they are needed. For example, applying the World Health Organization (WHO, 2018) Analgesic Ladder to consider analgesics for cancer pain that might be required, or forward-planning for opioid side-effects such as nausea or constipation. In the United States, ‘emergency kits’ of medicines kept in patient homes in the last year of life have been reported to be effective at improving symptom control and reducing hospital admission (Ogi et al, 2021).
Patients need information about medicines
A significant amount of palliative care medicines management in the home is carried out by patients and their families or other informal carers, in the absence of direct contact and guidance by health professionals, including nurses. The medicines that symptom management requires often need careful titration and frequently medicines include opioid analgesics, which can be associated with concerns as well as misconceptions about their use and properties. More generally, it is known that adherence to medicines is often associated with a person's beliefs about the necessity of their medicines on the one hand and their concerns about medicines on the other (National Institute for Health and Care Excellence [NICE], 2009). Patients' and carers' beliefs about the administration of opioids, in particular, may include concerns about addiction, tolerance and hastening of death. This in turn may lead to a reluctance to use such medicines, impacting symptom control. International literature repeatedly confirms that patients and carers need information as an important prerequisite to understanding and managing palliative care medicines effectively (Oldham and Kristjansen, 2004; Bee et al, 2009), and studies show that these needs are often unmet (Payne et al, 2015).
Nurses prescribing in this context have an important contribution to make through assessing patient and carer needs and providing information in an individualised way to meet them. It has been found that prescribing training can increase nurses' pharmacological knowledge and confidence in providing this information (Herklots et al, 2015), making them well-suited to delivering on this element of patients' and carers' needs. In response to these well-recognised needs for information and education, Latter et al (2017) developed a nurse-led intervention targeted at family carers of people with cancer living at home. As the first phase of a feasibility trial, this was developed through extensive consultation with carers and with nurses delivering palliative care in the community. The components of Cancer Carers Medicines Management (CCMM) are shown in Table 1.
Table 1. Components of cancer carers medicines management (CCMM)
| CCMM conversational process | CCCM toolkit: taking charge of cancer pain | |
|---|---|---|
| Nurse initially works through the steps below in one face-to-face session with carer. At subsequent contacts, nurse addresses any questions and revisits aspects of the conversational process | Nurse introduces resources and tools as appropriate to meet individual needs for information and support identified through conversational process. At subsequent contacts, nurse reviews use of toolkit resources | |
| Consent | Explain the purpose, your role. Consent from patient to discuss pain management with carer | Frequently asked questions about pain medicines: information about using morphine in question and answer format |
| Assess | Explore beliefs and previous experiences of cancer pain and pain medicines, assess support and other resources available and prioritise knowledge and skills needed | Medicines chart: to be completed jointly by nurse and carerRecord of medicines taken: for carer to chart regular and additional pain medicationPain diary: explanation of suggested simple format diary |
| Review | Prescribed and non-prescribed medicines. Review medicines chart if available or draw one up | What works best for pain? Chart collating information to help assess the effectiveness of pain management |
| Education | Provide coaching for the educational and information needs prioritised for the visit | Anticipating tool: planning how to respond to situations that may arise |
| Review | Make plans for review and provide resources, if needed | Stop, look, ask, listen and respond tool to help carer decide what to do when they feel uncertain or overwhelmed about managing pain medicines |
| Support | Invite naming of what has been learnt, reinforce support available, including who to phone if any problems before planned review time | Important local contact telephone numbersDetails of organisations providing further information and support |
Source: Latter et al (2017)
A feasibility trial was conducted following the development of the intervention. There were signs that the intervention produced positive outcomes. Overall, 17 family carers who had experience of the intervention were interviewed and most commented on the value of CCMM resources in the toolkit, particularly for information, reassurance and problem-solving. Some positive changes were also identified in carers' reports of medicines management, including increased acceptance of the need for opiates, knowledge being reinforced or enhanced, behavioural change (for example responding more readily to requests for pain relief) and improved systems in place for giving and recording medicines (Latter et al, 2017).
More generally, research into other interventions to help carers of cancer patients manage pain medicines show signs that face-to-face educational interventions supported by written or other resources have potential to improve knowledge and self-efficacy for pain management (Latter et al, 2016). But these educational packages have rarely been designed in collaboration with carers and nurses, and studies have not tested them in the often complex context of practice settings, so there are not yet definitive answers about the most effective methods to use in this context. However, nurse prescribers should be mindful of the evidence base underpinning adherence and medicines optimisation more generally.
NICE (2009) draws attention to the need to understand patients' knowledge, beliefs and concerns about medicines based on the evidence that these influence people's decision-making about taking them. NICE highlight the importance of giving patients information about medicines, to underpin informed decisions about medicine-taking. Working with the principles that the format and content of information should meet individual needs, the key points are to offer information about medicines before they are prescribed and discuss information rather than just present it, taking into account what the patient understands and believes about their condition and treatment. Information is likely to include (NICE, 2009):
- What the medicine is
- Its benefits
- Likely significant adverse effects and what to do if they are experiencing them
- How to use the medicine
- What to do if they miss a dose
- Whether further medicines will be needed and how to obtain them
- Suggest where patient might find further information and support, such as through providing written information or directing them to relevant websites
- Check understanding.
Using this guidance, emphasising the principles of partnership, shared decision-making and individualised communication to assess need and provide information would seem important principles to follow in the palliative care context.
Supporting self-management of medicines
Palliative care patients and their family and other carers will often be responsible for a myriad of tasks related to managing medicines in the home. Much of this will take place in the absence of a health professional. A range of tasks that family and carers undertake when managing medicines in the last year of life have been identified: obtaining, understanding, organising stock, safe storage, scheduling, remembering and administration (Campling et al, 2017). Certain responsibilities will inevitably fall to patients and family carers managing symptoms in the home. And for some, self-managing medicines may be a degree of control that they desire, despite the potentially challenging circumstances that surround palliative care.
A specific focus on carer self-administration of subcutaneous injections has received some attention in policy and research. The need for such injections for breakthrough symptoms may well form part of the repertoire of necessary tasks that are required to manage medicines in the home. Training carers to do this is likely to speed access to medicines and hasten the achievement of symptom control. The need for carer involvement in medicines administration also featured as part of the COVID-19 pandemic system of care delivery, with more patients dying at home and a reduction in face-to-face contact with health professionals. Although research is limited, it has been shown that it is possible to train carers to successfully engage in this task. Healy et al (2018) concluded from their randomised controlled trial in Australia that, ‘laycarers, when appropriately upskilled, can confidently administer subcutaneous injections to relieve breakthrough symptoms in home-based palliative care patients'. In this study, nurses used a standardised education and resource package to teach carers identified as potential participants by service providers. Healy et al (2018) conclude that motivated carers could be integrated into palliative care to improve both patient care and system outcomes. Although there is some evidence to suggest carers feel empowered by the experience and being able to contribute to family members staying at home (Wilson et al, 2018), carer preferences for doing this need to be carefully assessed. As Bowers et al (2020) highlight, family carers should not feel pressured to do this and may feel a tension between the clinical and emotional aspects of administering medicines to their loved ones. Family carers willing to do this need to be adequately trained and well supported by 24-hour access to phone advice if needed (Bowers et al, 2020).
Nurses delivering palliative care frequently visit patients and carers at home to monitor symptom control; assess, diagnose and treat newly emerging symptoms; offer psychological support and co-ordinate additional resources as required. Supporting self-management in community-based palliative care is not straightforward. First, the nature of self-management in this context is complex: self-management of medicines in this context has been found to be characterised by a dynamic, ever-changing process, moving along a continuum of behaviours that varies from no to full engagement (Campling et al, 2017). Rapid changes in disease progression, medicines and side-effects, as well as the emotive context, all contribute to this dynamic, in which patient and carer competencies and preferences for engagement in self-management are in constant flux. This is reinforced by a systematic review of patients' experiences and attitudes to self-management in advanced cancer (van Dongen et al, 2020). The authors concluded that self-management in this context is highly personal and multi-faceted, with activities either substituting, adding to, or being in conflict with care from health professionals. Van Dongen et al (2020) recommend that support for self-management needs an individualised approach that is embedded in strong partnerships between patients, carers and health professionals.
Wilson et al (2018) identified problems in their review of studies on carer experiences of managing medicines at home at end-of-life. These included carers struggling with the requisite knowledge and skills, linked to fears of over- and under-dosing, as well as some carers feeling disempowered and distressed when their medication administration did not control symptoms or a hospital admission was required.
It is important to equip all patients and carers with sufficient information to enable them to manage the day-to-day medicines management roles they frequently undertake in the home setting. But careful, ongoing assessment of the desire and capability for engagement in these and other forms of self-management is required, and supporting self-management should always include availability of health professional support as and when required.
Conclusions
Nurses prescribing in a palliative care context have a critical role to play in ensuring that patients and their family carers have rapid access to medicines in the home as soon as they are required. Service providers need to ensure that all community-based nurses meeting the prerequisites are supported to undertake prescriber training. Nurse prescribers employed in both the NHS and hospices need access to shared patient records and electronic prescribing to reflect and support the important contribution they make to palliative care delivery and the patient experience.