The majority of HCPs in this study acknowledged that patients did not always take medications as prescribed and many reported trying to explore how to resolve this with patients and families. Dosette boxes, and more commonly ‘blister packs’, were prepared by pharmacists, and often delivered directly to patients’ homes. These were offered and perceived as a problem solving intervention to help patients to organise and remember when to take their medicines. In a number of cases these boxes could be helpful and appropriate. However, HCPs recognised that some patients and families needed more comprehensive and innovative approaches. Here we discuss the strategies reported by HCP participants, including some who described ways of thinking ‘outside the box’ in order to help support patients overcome the practical difficulties of managing their medications in the home environment. Awareness of the challenges faced by patients and family caregivers was not evident in all professional accounts as is illustrated in this insight from a community nurse in her explanation of the underpinning issues:
It is very difficult for patients and I think, as healthcare professionals, sometimes, we can be a little bit blasé about writing prescriptions and not realising… the impact that will have [for the patient] at home when they’re faced with their twenty pills in the morning, and they’ve got to work out which one to take off, and which one to put back on, and obviously, we produce changes, they get used to the little round white one then it turns blue, and they don’t know what’s going on. So, I think it’s very important that when we’re prescribing, we spend an appropriate amount of time making sure that people understand what we’ve given them, what it’s for, what we expect it to do, but also, think about, …you’re in the home environment … you can check for the last six months’ stockpile that’s in the kitchen cupboard and things like that, to help people out. (HCP19_Community nurse)
I’ve got a lady at the minute …, she’s probably on twenty three medications. You go in [to her house and look at her medication boxes] ‘oh great, they’re taking all the medication’, and then you look on the floor, and you see there’s pills all over the place. So, I don’t delude myself that any of them are taking medications as prescribed. (HCP05_Community Nurse)
As the GP in the following quote indicates, a simple response of writing out a guide to a patient’s medication was not something they had done before nor intended to do again, despite the apparent benefits for the patient. They also note that the patient had to present to them in some considerable distress to prompt this option:
So she came to see me in a complete sort of meltdown once, being just very upset and ... didn’t have any sort of memory about how to take her medications at all … that was just due to being very worked up I think rather than anything else going on. And I wrote down, I gave her a little sheet that said take this at this time in this dose basically, typed that out for her. And …she doesn’t want to give up her independence, it’s very, very important to her, so not being able to manage her own medications is for her a disaster… Yeah, she brought it back and showed me and said I’m using this now thank you. I’ve never done that for anyone else before. …That’s the only person I’ve ever done that for and it was only because she was so distressed by it and it is this unique set of circumstances. (HCP25_GP)
Effectiveness and challenges of well established solutions to medicines management:
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)
Thinking outside the (dosette) box
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.