Medication work among nonagenarians: a qualitative study of the Newcastle 85+ cohort participants at 97 years old

Everyday work involved in medication use

Notable in the participants’ descriptions of their medication use is the degree of work involved in taking multiple medications: from organising the prescription to collecting and storing the medication, knowing the correct dosage times, physically taking the medication, and monitoring for adverse effects. Analysis uncovered three overlapping subthemes relating to different types of work involved including the ‘emotional work’ individuals undertake, relating to how they feel about their medication use; and the ‘cognitive work’ required to understand the reasons for, and effects of, the prescribed medications in the context of their health literacy. Both cognitive and emotional work underpinned the decisions made on accepting or rejecting a medication regimen. This, in turn, governed the ‘instrumental work’ associated with having the right medication available to take at the right time — including ordering and collecting prescriptions, storing, and then physically taking the medications. Yet perhaps surprisingly, for most, this work was not considered a burden:

Participant (P):‘I’ve got six on the prescriptions, regular prescriptions. Apart from those, which are prescribed by the medical group, I take little … What do you call them? … Extra tablets that are my own choice. So there would be about 10 probably.’

Interviewer (I):‘How do you feel about taking that number of tablets?’

P:‘Of the six on the prescription, I think there are about four — at least — that I’ve had to take all my life for various … I’ve got anaemia, pernicious anaemia. Yes, yes. So I’ve got to take little things like that. It doesn’t bother me … No trouble at all, no.’ (Joe, Male [M])

It would appear there is an apparent paradox between the work involved in medications management and the associated burden, however, this can be explained in terms of the degree to which, over time, medication use has become accepted, adhered to, and habitualised.

Habitualised management

The majority of participants had long since accepted the need for prescribed medications in a matter-of-fact way, without evidence of actively engaging with any significant decision making around this on a day-to-day basis. To a general question about their day so far, one participant responded: ‘Well I got up this morning, had a shower, got dressed and then I came through and had some toast and marmalade, I took my tablets, washed my breakfast things, put my little bit of washing out, run the sweeper over the floor and that was it.’(Maureen, Female [F])

This was a typical answer, suggesting that for many participants that were interviewed, medication use is an accepted and firmly embedded part of their autonomous daily routine, associated with minimal burden. One ubiquitous element in the descriptions of instrumental work was the presence of routines, whether these are daily, weekly, or monthly. The weekly visit to the pharmacy on a Friday was a fixed point in this participant’s routine: ‘Hair tomorrow, I go and get my hair done tomorrow, 9.30 am, then tablets on Friday. I go up for them to the chemist. They could deliver it, but I said, “Well, I never know when I’m gonna be in.” So, I’d rather go up for them myself. So, I get them on a Friday, when I get some ham or something and some rolls for when [daughter’s name] comes Saturday and we have our lunch.’(Mary, F)

Various strategies to optimise adherence were described, and demonstrated medication use was completely entrenched into daily routine practices reflecting that, for many participants, their lives were more generally characterised by domestic routines. For example, some placed medication in different locations around the house to be at hand when needed: ‘I’m usually setting my breakfast up about 8.00 am, and the washing up and putting the next day’s medication in the two little containers, one I take up to bed for the morning’s medication, and the night-time one I keep in there.’(Tony, M)

The importance of routine was reaffirmed when participants described lapses in adherence were most often associated with changes in their normal pattern of activity: ‘Say for instance on Sunday night there. I forgot to take them. No, Saturday night it must have been. With my son. We had been out all day and came in late at night. About 10.00 pm it was when we came in. I was so eager getting undressed and getting into bed after having a wash that I forgot to take my tablets. It’s just occasions like that when I might I forget you see.’(Jack, M)

For most participants much of the cognitive and emotional work involved in decision making relating to medication adherence had taken place in the past and generally no longer required further processing on a day-to-day basis. This is not to imply that participants were necessarily passive in their interest or understanding of medications. While this varied, some indicated a good medication literacy: ‘There are not so many now but the important, the immune system one, MMF [mycophenolate mofetil], I used to be on 250 mcg capsules morning and evening, and then [name of doctor] after tests, the antibodies that had been causing the encephalitis, I was having these encephalitis fits … Then they found 10 times the normal amount of this particular antibody so they put is [me] on that MMF.’(Tony, M)

Many participants had taken medications (sometimes the same medications) for years and even in the absence of direct evidence of effectiveness, many of those interviewed were still strongly committed to taking their prescribed medications regularly. The motivation for ongoing medication adherence most commonly articulated was a trust in the medical professional prescribing the medication:

I:‘You feel as though they’re helping you, the medications?’

P:‘Well, they’re bound to be. They’re bound to be, [interviewer’s name], or I wouldn’t be getting them.’ (Jean, F)

This trust appeared to be based on a combination of the stated accepted expertise of the professionals (based on the symbolic capital of the prescribing clinicians), but also indicated implicitly by the lack of any adverse events or side effects mentioned expressly in the accounts: ‘It doesn’t worry me, because it’s only three things and I know it’s not doing me any harm. It’s for my own good. I just swallow them, full stop. I don’t even think. I just take them and get on with it.’(Jean, F)

Only a few participants described occasional incidents of swallowing problems and adverse effects.

While the majority of the responders had reached a steady state in their medication management, this was not to suggest that no cognitive or emotional work was being undertaken. For most, there was still an implicit monitoring of effectiveness or side effects from medications by the participants. Some were content that their medications were beneficial, often citing their own longevity as proof, however, this seemed to vary by medication class and the availability of evidence on which to base these perceptions. For example, medication for analgesia was given as an example, where effectiveness could be easily monitored: ‘My taking the codeine and paracetamol, it doesn’t make things completely back to normal, but I think it helps. The rest of them, I probably don’t notice the difference. I know my blood pressure is normal, so I know the tablets are controlling that.’(Cath, F)

I:‘Is there anything that you are able to do to ease the pain or to make your knees better?’

P:‘I have ointments, but nothing seems to do any good. And I take ibuprofen tablets, but they don’t seem to help much there.’ (Margaret, F)

For longstanding difficulties associated with particular medication use, participants articulated the autonomous solutions they had derived in order to achieve an acceptable balance between the potential benefits of the medication and the negative impacts of adherence: ‘Occasionally I drop them off, but then I’m probably advised to restart them. I mean, the one for osteoporosis, the alendronic acid one, anybody who takes it will tell you, it’s a real misery. You aren’t supposed to lie down, or have anything to eat for half an hour before. The nurse might say, take it in the night, but you don’t want to be sitting up in the early morning, or the middle of the night. It really is a nuisance to take. The rest of the tablets you just take them and that’s that.’(Cath, F)

Participants appeared to derive comfort from the familiar routines and satisfaction from performing these routines competently, this role fulfilment may help to foster a positive sense of identity as well as demonstrating (and protecting) their autonomy, especially for participants who were growing more dependent in other areas of their lives.

For this group of the oldest old, as would be expected, previous practices relating to medication management had been challenging for some due to physical and/or cognitive decline. This meant relinquishing some of their autonomy over the maintenance of their health and had to call on their social capital to fulfil the task of medication management:

I:‘Are there things that are difficult for you nowadays to go on holiday?’

P:‘Oh, yes. It’s awkward for medication. [Daughter’s name]’s used to it but I get quite mixed up with that, checking it before and keeping it in order while we’re away.’ (Tony, M)

Diminishing autonomy

The process of relinquishing autonomy is slow, adjusting to physical and cognitive change occurs over time and new routine practices are gradually formed seeking assistance across a range of activities of daily living, in a stepwise fashion. In terms of medications, in some cases elements of the instrumental work associated with medicines was shared or relinquished to members of the participants social network, diminishing the potential burden experienced:

P:‘I sit at the table, and [daughter’s name] brings them. She helps me, now, to get the blooming things out. I sit and do 4 weeks at a time.’

Daughter:‘They’re all written down. She follows the names. I bring all the boxes, the Tupperware boxes out, and then she puts them all in and does them for … She sits and does them.’ (Eileen, F)

Doctors’ surgeries and pharmacies typically offer multiple means of communication to order repeat prescriptions, including in person, telephone, and internet. Nevertheless, a combination of sight, hearing, and mobility impairments made accessing these services difficult for some, and family, friends, or paid carers were supporting this work.

In the most extreme cases, participants did not describe any burden associated with medication management as they had relinquished responsibility for the mainstay of the associated work into either informal or formal support networks. For example, one participant no longer knew the names of any of her medications or the reasons for why she took them. She was living in her own home with carers attending four times a day to assist her with personal care, meals, and medications:

P:‘Well, to tell you the truth, I don’t know what I take.’ [laughter]

I:‘Who looks after your medicines, then?’

P:‘Oh, the girls.’ (Pauline, F)

This participant was still committed to taking her medications and did so regularly, with the assistance of her care workers. Doing less of the instrumental work associated with medications appeared to be closely associated with a lack of cognitive or emotional work including knowing which drug they were taking and why, or feeling anxious about their medication use. This also tended to happen in a context where participants had given up or were giving up responsibility for other areas of their life into the trusted domain of professionals and/or family members.

Disrupted management

There were two clear exceptions within the sample, who fell outside of ‘habitual management’ having suffered a disruption that had led to a change in their medication management practices. The first example was a woman with a new health problem struggling to adjust. She described her medications as: ‘Bane of me life.’(Pamela, F)

She was still taking the medications, but she had experienced some severe adverse effects and was anxious that the doses were still not correct. Being outside of the ‘steady state’ where greater cognitive and emotional work were implied in order to understand the change in health status and the consequences of this in terms of medicines management, were associated with much greater feelings of burden.

The second exception was a man who had stopped all medications, no longer visited his GP, and had refused investigations of a skin lesion. He described his choice, saying: ‘I decided I would live with it, until my time on this planet was up.’(Bob, M)

This rejection of medication and other forms of medical intervention have been a recent change in his outlook, following a major disruptive life event — the death of his wife — and he feels he no longer wants to prolong his own life, taking the autonomous decision to cease his medication use alongside other forms of health care.