The majority of HCPs 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 described by HCP participants in the study who were thinking ‘outside the box’ in order to help support patients overcome the practical difficulties of managing their medications in the home environment. This insight from a community nurse illustrates 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)
Dosette boxes and blister packs
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:
We’ve got a high incidence of dementia as well in the area. So what we’ve done, as a pharmacy team, is we’ve put everybody into, that we feel are vulnerable, with their consent, obviously … dosette boxes where we dispense the medication into morning, lunchtime, evening, bedtime. (HCP20_Pharmacist)
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. 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.
One of the recognised issues with pre-prepared blister packs 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. In addition, box contents are usually made up for a month, and cannot be easily altered if medication is changed during this period:
If someone was vulnerable [like this man with learning difficulties], they find it hard to concentrate and understand the meds. And it’s just trying to work out how we add a new drug - the dosette’s been done for the month - do we rely on him to remember? He’s got informal carers like neighbours. It’s really hard to work out who’s going to make sure [he takes them]. (HCP26_GP)
So things like dosette boxes, for example, are an absolutely fantastic idea, until you need to be changing medications regularly. And then they become a complete and utter barrier. A lot of dosette boxes are done on a four weekly batch, so if they see us at the beginning of the four weeks, and we increase the medication and decrease the medication, it, the dosette boxes can almost be a problem. (HCP19_Community nurse)
HCPs cited concerns around the wastage of medications when boxes needed to be altered during the month’s prescribed supply in which case the rest of the medications in the box had to be disposed of. 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)
Thinking outside the (dosette) box
Many healthcare professionals recognised the limitations of the pre-prepared dosette box 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.
[She was in pain], she had only got ten milligrams of long tec in the blister packs and the GP had told her she could take a[n extra] five milligrams, but because the blister packs have just been made up, it meant (it’d) be another month. So, …the chemist had delivered her [a box of] five [milligram tablets] but that meant nothing to her. So I wrote on it, …so she could [see]... When I went to see her, I said, ‘Oh, how has the increase been since you’ve gone from ten to fifteen?’ ‘Oh, I don’t think it’s made a difference’. …And so we talked about it. When I went into the living room, …and looked at the tablets, she hadn’t taken any of the fives. So she had only been taking ten. So she’s just in a muddle. (HCP02_Specialist Palliative Care nurse)
This was a particular issue when changes were made to medication regimes. For these issues taking some time to explain, and implementing a simple memory aid system, 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)
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)
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’.
I get on well with other forms of medication, because sometimes, like a buccal … or a patch, that can be an easier way for someone to actually accept receiving the medication rather than taking everything orally. (HCP06_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, and this level of input was unlikely to be routinely available.
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)
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)
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:
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)
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.
The paper has explored ways in which HCPs in a UK study reported thinking ‘outside the box’ in order to support patients and families with medication needs. Some expressed resignation that patients often failed to, could not or did not want to take their medications as prescribed. However, participants described sometimes going to considerable lengths to support patients and seek ways to help them to take medications in an acceptable and effective way. HCPs in this study often focused on the prescription element of the process, aiming to ensure appropriate symptom control by undertaking simple changes to regimes and routes of administration. These adaptations often made a considerable difference to patients’ ability to manage their medicines effectively. In other instances, HCPs reported having to be quite innovative, and explore a number of routes to help patients overcome the practical problems involved in organising and taking their medicines effectively. Examples included writing the function of the tablets on the box, giving prompt cards, issuing medications on a limited basis to reduce stockpiling and misuse, providing visual aids and reinforcing information in writing or over the phone.
Patients living at home at the end of life often have complex medication regimes with large numbers of medications, different routes of administration, and high doses of controlled drugs. In line with the international literature, the HCPs participating in this study recognised the burdens of polypharmacy at end of life 17, 19, 22-24, but did not always seem to acknowledge how the burdens of medication management added to the ‘work’ patients and FCG’s were undertaking when someone is seriously ill in the home environment 25. FCGs are also more likely to be older, and have reduced abilities and co-morbidities of their own 26. Until recently much of the literature on medication management focused on ‘adherence’ and ‘compliance’ and the implication for health outcomes 8, 27-30. There is now a small but growing body of work that recognises the difficulties for patients 5, their desire to limit the amount of medications they take as far as possible 2, 3, 19 and the burdens regimes can place on FCGs when a patient is dying at home 23, 31, 32. Indeed, the international literature indicates that in other countries, particularly the United States and Australia, FCGs are regularly undertaking even more advanced tasks in administering sub-cutaneous medications prescribed for end of life symptoms 33-37. While there have been some moves towards this in the UK the feasibility of this approach is still being assessed 38, 39.
While not aimed specifically at palliative care, current UK guidance 20, 40 advocates for professionals to take account of individual patient needs, preferences for treatment, health priorities and lifestyle and recognise that ‘medicines are likely to be just one aspect of a person’s care’ 40. However, to date there has been little work to explore ways of supporting patients and families in medicines management in order to make their lives less stressful 7, 41.
The ability to maintain accurate medicine taking could be a critical factor in avoiding unscheduled hospital admissions and determining whether a patient could remain living at home 42-44. This paper seeks to extend beyond the compliance/adherence discourse 45 to recognise the reasonable difficulties patients and families often face in managing complex regimes and how HCPs might help them overcome these 8. HCPs in this study often reported encouraging the use of simple dose administration aids such as dosette boxes and blister packs. These can be extremely useful and can support patients to remain at home by helping them to manage their own medication. They can also be a useful tool in supporting Home Care Workers to safely prompt and administer medications in patients’ homes 10-12, 46. Conversely, these aids can have negative implications for a person’s independence and agency when they disempower patients by removing responsibility for, and understanding of, their own medications 47. They also have practical disadvantages when, as is common in end of life care, medications need to be changed rapidly and frequently 10. This increases risk of adverse events, lack of effective symptom management, and instability of some medications when stored outside their original packs. The result is often considerable wastage of pre-prepared boxes or multiple additional medications which are not included in the box or blister pack 46. These types of issues add to the challenge of optimising pain control in the home environment 48, 49.
Our findings further echo those of current literature in that the majority of participants rarely recognised the current or potential contribution of pharmacists as part of the palliative care team 50-54, and the community pharmacy services designed to improve patients’ knowledge of medicines and use 9, 55, 56. Those that did recognise and refer to the role of pharmacists, were either based at, or working with, GP practices where pharmacy services were on-site. This proximity afforded closer relationships between pharmacists and GP/community nurses and a greater understanding of the benefits of additional services, such as, medication review clinics run by pharmacists in GP surgeries.
This paper has demonstrated that there is scope for much greater understanding of the reality of patient and FCG experience, the difficulties they face, and the potential for HCPs to engage with innovative and tailored ways of supporting medicines management for seriously ill patients being cared for and dying at home.
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.