An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study

Qualitative study underpinned by a social constructionist perspective involving semi-structured in-depth interviews. Interviews were situated accounts of HCPs’ perspectives and understanding. In their different roles HCPs engage with patients and families in a variety of ways, in clinics, pharmacy/community settings and in their own homes allowing them to identify practical day-to-day issues and offer support. This paper draws on a set of findings from a wider NIHR funded UK study to explore the management of medications for patients who are approaching end of life. We report on how HCPs described the way in which they supported patients and families to manage medications in their homes. Patient and family perspectives will be reported elsewhere.

The study is set in two English counties. Both are diverse in levels of affluence, age, ethnicity and population density, with both rural and urban areas. In both regions there are generalist and specialist teams providing palliative and end of life care.

Participants included 40 community professionals from a range of roles, including: General practitioners (GP), specialist palliative care nurses, community nurses and both GP- and community-based pharmacists (see Table 1). Participants were recruited using purposive and snowballing techniques across the two counties via GP practices, specialist palliative care services and via email to a number of key contacts who were asked to distribute the information to their networks.

Interviews took place between June 2017 and October 2018. The majority of participants were interviewed individually at their place of work and during work hours. However, we were receptive to workload constraints and participant preferences so undertook four interviews over the telephone, one joint interview, and three group interviews (involving three or more participants). Interviews lasted between 19 and 69 min. All participants gave written or, in the case of telephone interviews, verbal consent. An interview schedule was used as a guide allowing the flexibility to tailor and adapt each interview to the participant and their responses. All interviews were audio recorded and notes written up after the interview took place. The focus of the interviews was to explore what HCPs saw the issues to be for patients and families managing medications at home as the patient approached the end of life, and how they sought to support such patients and families in managing their medications. HCPs were asked to think of a current or recent case which had posed issues for medicines management or where this had worked well. They were then asked to situate this case within their normal practice to establish how common or rare particular issues might be. The interview guide can be found in Appendix A. All interviews were conducted by EW, GC and KP. All have considerable training and experience in sensitive topics, qualitative methods and palliative and end of life care.

All interviews were transcribed verbatim and fully anonymised before transcripts were uploaded to Nvivo12© and coded. Using a process of thematic analysis EW, GC and KP reviewed codes and undertook condensing and sorting. The legitimacy of categories was reviewed with the project steering group and considered in the context of the data collection methods. Several transcripts were also read and coded by our PPI co-applicant (Alan Caswell) for an additional perspective, transparency and comparison. Each transcript was coded by two team members and three were triple coded. Once coding was complete, nodes were further interrogated and refined to generate node summaries of key themes illustrated by quotations from transcripts. A number of key findings emerged during this process. These have also been compared with patient, family caregiver and bereaved family caregiver finding as part of the wider study. In June 2019 findings were presented at two workshops for HCPs (some of whom participated in the interviews) for feedback and comment. This paper focuses on the ways in which HCPs reported supporting patients and families to manage medications in the home.

Dosettes and blister packs were often seen as an effective strategy in eliminating any confusion about what tablets to take when. HCPs viewed them as an important tool and appropriate way to support patient’s wishes to continue to manage at home independently. A few respondents observed that this system was sometimes put in place for the convenience of paid Home Care Workers enlisted to prompt patients to take medication in the home, rather than the patient. However, this could potentially undermine agency and competence, detaching patients from the process by ‘making people further removed from taking responsibility of their own medication’ (HCP05_Community nurse). They also made it difficult, if not impossible, for patients to identify individual tablets.

Dosette boxes and blister pack were recognised to pose two key issues for palliative care. One is that they do not accommodate all types of medication. Consequently, patients might have to take additional medications, such as liquids or tablets prescribed to be taken ‘as needed’, alongside the allocated pills from the box. Secondly, box contents are usually made up for a month, and cannot be easily altered if medication is changed during this period. HCPs also identified potential problems with pain medications where patients who are unaware of, or unable to identify the contents, may risk taking more pain relief than they need if they are also taking ‘as needed’ doses on top of those included in their dosette box.

And I think actually pain does vary day to day in a patient, what they do or are not doing. And I’m very hesitant actually to put it in dosette boxes as well for that reason. And also, if you do get side effects, you get more drowsy for any other reasons, you really want to reduce this quickly and not taking the next dose and so forth. So you don’t have this variety, because in a dosette box I can’t, most of the time, see which of the pills is which, let alone the patient, and you can’t take it out and then say, ‘Ooh I think I’d better miss that because I’m feeling drowsy’. (HCP25_GP).

Some healthcare professionals recognised the limitations of the pre-prepared dosette box for patients at the end of life and the differing needs of individual patients. Reviewing and rationalising medications was often seen as the first step to supporting effective medicines management. HCPs, especially nurses making home visits, recognised that a number of issues with medications stemmed from patients not fully understanding what their medications were, what they were for, and how they should be taken. However, they also noted despite the involvement of multiple health professionals few took responsibility for overarching management of medications and many often did not ask the right questions or investigate the underlying causes of patients’ issues with medication:

I suppose we always think that the pharmacists are doing a lot of the explaining and a lot of the discussion … [but] I’ve never really had that conversation with a pharmacist and saying, Actually, do you just give them the Morphine, or do you tell them anything else? (HCP11_GP).

He was like a rabbit in the headlights, he didn’t know what to do, he’d just got all these tablets there, he didn’t know what to do, he didn’t understand what half of them were for. So his way was to not take them, … and people were going along the lines of, ‘oh those, those medicines haven’t worked, let’s try something else’, but actually, those medicines had never been taken. … And nobody had taken the time to discuss it with him. (HCP14_Specialist Palliative Care nurse).

This was a particular issue when changes were made to medication regimes, as is common in end of life care. For these issues, taking some time to explain, and implementing a simple memory aid system to support the explanation, could be extremely effective.

So I give [out] a lot of laminated prompt cards, that just lays out, you know,’ your aspirin is being taken for this, it should be taken with food in the morning’, and then they can follow that. And that actually helps way more than a dosette (HCP21_Pharmacist).

HCPs also reported using items such as lockable tins for patients who could not safely manage their own medications, or where there was potential for misuse or misappropriation of medication, and dispensers with timing devices or alarms for those with impaired memory. Some reported changing the route of administration for a patient when swallowing tablets became an issue or when the number of tablets added to the burden of medicines management. One community nurse felt alternative administration routes also supported adherence as they did not hold the same negative connotations as ‘pills’ and ‘tablets’. Yet HCPs also noted that patients and families did not always know that medication came in different formulations or that they could request this.

Actually, a lot of relatives and patients aren’t aware they can change the form of the medication and have something that’s either dispersible or in liquid form. … as I’m doing my nursing assessment, I’ll talk about medication as one of the things I’m discussing. And, so I’m saying, ‘Are you managing to swallow your medication okay?’ At that point, unless they were asked a direct question, patients don’t often flag it up to you, so, largely, ‘no’. ‘It takes me half an hour in the morning, to swallow one tablet’. And they don’t realise, actually something simple like putting it in some yogurt and having it as a bolus, might help it, help swallow it, or they won’t realise that, actually, that type of medication, you can have in a different form and have it in a syrup. (HCP06_Community nurse).

Participants described cases where they had needed to take a more innovative and active role in supporting the patient to manage medications.

I had a gentleman who couldn’t read or write, … and he lived on his own, what we ended up doing with him, with managing his medicines, was taking one of the medicines, [sticky] taping it to a piece of paper and saying this one, and then writing next to it, like, how many times a day to take it, so three dashes …. you learn little ways of, often, you try something, that doesn’t work so you try something else, so it is tricky. (HCP14_Community nurse).

In a small number of reported instances, HCPs recognised that their input was needed on a more consistent basis to support medication use. A few HCPs reported telephoning patients to remind them of recent changes to their medications. One HCP narrated an instance with a patient with memory issues who was repeatedly coming to hospital with heart failure symptoms because he was not remembering to take his medication. They subsequently rationalised this to be taken once a day and arranged for a community nurse to visit daily to prompt this administration. However, lack of time to adequately discuss and monitor medicines and related issues was acknowledge to be a limitation. This level of input was unlikely to be routinely available and the HCP who recounted this experience also noted that this was an ‘extreme’ response that could not be support for long.

Tailored solutions were particularly required in difficult and unusual situations, for example where patients or someone in their household were affected by phobias, addictions, substance abuse or the effects of dementia. One palliative care nurse described how she and her colleagues were working to find constructive and creative ways to manage pain for a patient who was determined to die at home. As the patient, his FCG and their circle of friends had issues with substance misuse, safeguards were put in place to limit the amounts of morphine they could access at any one time.

We just introduced the patch last week, he was using a lot of the Oramorph, … he’s used the Oramorph less since the patch has gone on. … We always put dates on the bottle and the box. So we can see which bottle he’s still using and which box, and keep an eye on it as well. He knows we do that. (HCP07_Specialist Palliative Care nurse).

This HCP also recalled a patient who expressed a fear of needles and refused any injectable medications. In the quote below the HCP described trying to balance respecting the patient’s choice and agency and providing effective care:

We can’t use needles. So we are limited in what medication he can have to manage his symptoms anyway. We’ve got patches … And we’ve got buccal things that we can use to manage as much as we can, but obviously, it doesn’t give us the range that we would normally have. (HCP07_Specialist Palliative Care nurse).

Recognition, and support for, patient choices about their treatment and care was a strong theme throughout the interviews. A number of HCPs described the considerable effort they were prepared to make to enable these, regardless of whether they considered them to be wise options.

So she’d developed swallowing issues. And so we tried liquid medication, she didn’t like it. … So she went back to taking oral tablets. … And then I can think about an incident, it was interesting, at the hospice, where I got a phone call from the staff nurse saying the carers had said that she’d had a choking episode following taking tablets in the morning, and that, at the hospice, they weren’t going to be prepared to give her tablets any longer. … I said, ‘This isn’t an issue, this lady has capacity to make the decision, she doesn’t want to take liquid medication, she wants to take her tablets, the risks have been explained to her’. (HCP05_Community nurse).

There were few references to pharmacists taking on roles to support medicines management or to other HCPs identifying the potential for greater pharmacy integration in the healthcare team.

A strength of the study is that it represents the views of a wide range of HCPs, including pharmacists, working in diverse community healthcare services and geographic locations. However, the study location in two adjacent English counties means that the findings may not be typical of other settings. It is also important to note that 17/40 participants were considered to be specialists in palliative care and 4/40 condition specific specialists. As such, we would expect them to manage a more complex caseload and be able to implement a wider range of ways to support patients in managing their medications. We recognise that as self-selected participants, they are likely to have an interest and specialist expertise in the management of medications. Interviews may involve accounts in which respondents are likely to be motivated to give a good account of their practice. We are unable to know how this compares with what they actually do in practice. However, data from patients and FCGs in other parts of the study suggest that proactivity by HCPs is far from routine and especially in the last weeks and days of life when families are confronted with real anxieties about the management of medications.