‘Seamless care? Just a list would have helped!’ Older people and their carer’s experiences of support with medication on discharge home from hospital

Abstract

Background  Many older people use one or more prescribed medicines on a daily basis. Effective medicines management at hospital discharge can support appropriate use of medicines following discharge and help avoid unnecessary hospital re‐admission. Many people, however, feel they receive insufficient information about medicines on discharge from hospital.

Objectives  To explore older people and their family carers’ experience of hospital discharge in relationship to the organization and management of medicines.

Design  Qualitative interviews with older people over 75 years old, taking four or more medicines, and their carers, following discharge from hospital in the United Kingdom (UK). Participants completed medication diaries prior to the interview.

Setting  Interviews took place in the participant’s home.

Results  Nineteen interviews were conducted involving 12 carers and seven older people. Participants were generally not satisfied with the discharge process, particularly concerning perceived delays in discharge. Inadequate explanations about medicines at discharge were commonly reported and led to omission of medicines, incorrect dosage, anxiety and confusion. Poor communication between the hospital and general practitioners or community pharmacists was also evident.

Conclusions  Despite significant policy recommendations and research in this area, many problems with the management of medicines during hospital discharge were shown, and a lack of partnership was evident between hospital staff and patients/family carers regarding the use of medicines post‐discharge. Improved medicines management during hospital discharge is required to ensure older people take their medications as prescribed and to protect them from the adverse effects of medicines not being taken correctly.

Background

Around half of all NHS medicines are prescribed for people aged over 60 years, who may suffer from a number of long‐term conditions. ¹ The use of medication is increasing, and many patients will be taking a number of different medicines to manage their condition(s). The ageing process affects the body’s capacity to handle medicines, whilst multiple disease and complicated medication regimes all affect a person’s ability to manage their medication effectively. In addition, older patients are more likely to be living alone, taking multiple medicines with high dose frequency and have decreased dexterity and/or cognitive functioning. ² Current evidence suggests that up to 50% of older people do not take their medicines as prescribed. ³ , ⁴ The risk of medicines not being taken as prescribed is increased following discharge from hospital where new medicines may have been prescribed, with resulting adverse events or side‐effects of the medication, which may lead to avoidable re‐admission to hospital. ⁵

In 2001, the UK National Services Framework for Older People ¹ (NSFOP) set out standards to improve services for older people. The safe and appropriate use of medicines has a significant emphasis within the NSFOP to ensure that older people derive maximum benefit from their medicines and that any associated adverse effects are minimized. An accompanying document, Medicines and Older People ² , had a specific focus on the ways in which medicines use by older people can be improved, including the need for prompt and effective discharge procedures. A seamless discharge from acute to primary care for older people, it is argued, will benefit rehabilitation and convalescence, and medication is a primary factor in this transfer.

There is considerable research evidence and policy guidance regarding the problems found with patient medicines at the time of discharge and which details ways in which difficulties can be minimized. ⁵ Adverse effects following hospital discharge are, for example, experienced by 19–23% of patients, and it is estimated that more effective discharge planning and medicines management could avoid 60% of unplanned re‐admissions of older people. ⁶ , ⁷ Many patients have inadequate knowledge of their medicines following discharge, particularly in relation to when they should be taken and their side‐effects. ⁸ , ⁹ Older people who received in‐patient counselling about their medicines were more likely to take their medicines in the way that they were prescribed and less likely to be re‐admitted to hospital. ¹⁰

UK government guidelines emphasize that discharge planning should be a whole systems process, which should begin at the earliest opportunity and involve multi‐disciplinary and multi‐agency collaboration. Medicines management must be an integral part of the discharge process to facilitate the patient’s use of prescribed medication and to ensure prompt communication about any medication changes with the patient’s general practitioner and community pharmacist, thus avoiding adverse effects and preventing unnecessary re‐admission. ¹¹ , ¹²

Health outcomes following discharge from hospital are, however, also dependent on the older person’s appropriate use of prescribed medicines. Non‐adherence to prescribed medication is significant in developed countries and can be intentional, i.e. a deliberate action on the part of the patient to not take their medicines as prescribed, or unintentional, when it arises from circumstances such as the patient’s lack of understanding of the medicines. Non‐adherence involves immense costs for the patient through greater morbidity and increased hospital admissions and leads to wasted resources for health services. ¹³ In the United Kingdom, for example, a ‘cautious estimate’ suggests that approximately £100 million per year is wasted, in primary care settings, on medication that is dispensed but is later returned to the pharmacy. ¹⁴ This figure is, however, likely to be a significant underestimate of the true costs of patients’ non‐adherence as it does not include those incurred through medicines dispensed, but wasted in the home, or the costs involved in treating the consequences of non‐adherence.

Recent policy guidance regarding the facilitation of adherence has emphasized the importance of the active engagement of patients in decisions about their care, made on the basis of full information in partnership with health professionals and respect for the patient’s views and beliefs about the use of medicines. Similar themes are evident in many current policies such as the expert patient initiative. ³ , ¹⁵ , ¹⁶ The extent to which patients are enabled to be fully engaged in decisions about their medicines has, however, been questioned. ¹⁷ , ¹⁸

The importance of the role of informal carers in supporting and maintaining older care recipients is increasingly being recognized. Guidance regarding hospital discharge emphasizes the need for effective partnership with carers so that they are fully involved as partners in all stages of discharge planning. The recent UK Carers Strategy highlights the importance of providing appropriate information and support, particularly around the time of diagnosis, on discharge from hospital and in transition to different services, so that carers can feel confident in their caring role and are able to share their experience and expertise of the patient with care professionals. A reluctance on the part of health professionals to share patient information with a carer has, however, been noted as a cause for continuing concern. ²⁰

This study sought to explore the experience of both older people and their carers regarding the ways in which the older person’s medicines were managed at the time of hospital discharge.

Aim of study

To explore older people and their carers’ experience of hospital discharge regarding patient‐centred care, shared decision making and the organization and management of medicines.

Method

A qualitative research approach was adopted involving semi‐structured interviews with older people living independently and those living with their primary family carer. (The study particularly examines the experiences of caregivers who are family members rather than those of professional carers.) With agreement, the interviews took place jointly with the older person and carer. The older person, or their carer, was also asked to complete daily medication diaries for a period of 1 week.

The study was advertised through local voluntary sector groups involved with older people, discharge home from hospital schemes and local general practice surgeries. The organizations circulated information about the study to older people aged over 75 years who had been discharged from hospital within the past month and who were on four or more medications. People interested in participating contacted the research team and were visited by one researcher (DT), who provided further information and explained participants could either take part in an interview or complete the medication diary plus an interview. Information on the study together with the consent forms was left with potential participants. Informed consent was also sought from the carer. Those interested in participating posted back the signed consent forms, and a second visit was undertaken either to conduct an interview or to complete the preliminary medication record sheet for the diary. At this meeting, DT explained the medication diary in full detail emphasizing it would be helpful to have any information on daily medication routines, even if people felt unable to complete the diary for the whole 7 days. All participants completed the medication record sheet from the diary with the researcher at this point in the research process either as the commencement of the interview or in preparation for the completion of the diary. A third visit was arranged for the collection of the completed diary and interview. The record sheet detailed all medications taken by the older person including over the counter as well as prescribed medicines. Six participants opted not to undertake the diary. The primary reasons stated were participants felt every week was the same and there would be no change to the medication routine and/or it would be too time‐consuming where the health of the older person was deteriorating rapidly. The interview schedule was based on four main topics: the participant’s experience of the hospital discharge process (planning and preparation for the discharge/continuing arrangements for medication once back in the community); their knowledge, management and understanding of the medicines (the medication record sheet and, where appropriate the diary, informed this topic); the wider context (who else may be involved in the medicines management process); and other areas of interest to participants not covered by the interview schedule in relation to the management of the medicines. The topic‐specific interviews averaged around 1 h. Additional time involved the completion of the medication record sheets and reviewing the diaries. After the completion of the first two interviews and diaries, minor adjustments were made to the instructions within the diaries following feedback from the participants.

Interviews were recorded and transcribed. Qualitative thematic analysis was conducted using N6™ [QSR International (UK) Ltd, Southport, UK] software. Ethical approval was gained for the study from the local NHS health research ethics committee.

Sample

Nineteen people participated in the study. Of the 19, there were seven older people who lived independently who were interviewed and 12 carers of older people who were family members. Of the 12 carers interviewed, the older person they cared for was present for six of the interviews, and these interviews were conducted jointly with the older person. The remaining six interviews were conducted with the carer only as the older person’s condition prevented them being present. Five men and fourteen women took part in the interviews, and the median age of the older people recently discharged from hospital was 84 (range 75–100).

Findings

Thirteen medication diaries were completed, showing that the older people in the study took a range of medications daily for a number of long‐term conditions (see Table 1). Medication regimes were generally complex with older people and carers using a number of strategies to support their use of medications including dosage administration aids, lists and other visual reminders. Carers generally assumed significant responsibility for the administration of medicines. During the interviews, six of the participants described examples of ways in which the medicines taken were different to the prescribed schedule. This situation was one of intentional non‐adherence for two participants in that they deliberately altered the dose or timing of the medication to fit in with their daily lives. For the remaining participants, the non‐adherence was unintentional as they demonstrated a lack of awareness of the ways in which the medicines should be taken or did not appreciate the significance of not taking the medicine exactly as prescribed. OP7, for example, took a whole tablet rather than the prescribed half as he found it difficult to cut the tablet.

Table 1.

Summary of medicines diary data

Participant No.	Medication given/taken	Action suggested by participant (Correct action in brackets)	Comments
C01	Co‐amilofruse	Water tablet	Hospice provided medication list
	Metoclopramide	For nausea	District nurse (DN) is visiting to dress leg ulcers (DNs provide dressings and creams)
	Clopidogrel	Blood thinner
	Co‐danthramer	Constipation
	MST	Pain relief	Severe nose bleed ×1 requiring cautery
	Oramorph	Breathlessness and pain	Reliant on DNs taking Px requests to GP and delivery by pharmacy
	Temazepam (Oxygen used also)	Sleep aid	Partnership with GP evident
OP2	Co‐Careldopa	Parkinson’s disease	Socially active – reduces furosemide to save stop on longer journeys
	Modisal	Prevent angina
	Furosemide	Water tablet
	Spironolactone	Water tablet
	Micropirin	Blood thinner (Branded aspirin)
	Lisinopril	Heart
	Tamsulosin	Prostate
	Simvastatin	Heart
	GTN	Angina
	Quinine	Pain in toe
C03	Aldactone	Diabetic (diuretic)	Considerable difficulties evident
	Plavix	Blood clot prevention	Wife responsible for tablets
	StillNoct	Sleeping tablet	StillNoct – usually gives ½ prescribed dose
	Bendroflumethiazide	Diabetic (Diuretic)
	Digoxin	Heart beat regulation	Husband admitted to hospital after fall, poor service from ambulance team and wife hurt back. Reports feeling very low
	Pravastatin	Cholesterol	Pharmacist did not deliver requested tablets
	Warfarin	Anticoagulant
	Adcal	Reason not given
C04 2 diaries	Risedronate	Osteoporosis	Very comprehensive diary
	Aspirin	Thinning of blood	Proprietary cough medicine given +++ Eventually OP diagnosed with chest infection
	Digoxin	Heart fibrillation	Formal carer also involved in medicines
	Anastrozole	Breast cancer	Avoids food for ½ h after Risedronate – should be at least 2 h
	Omeprazole	Stomach acidity
	Adcal	Osteoporosis
C05	Simvastatin	Cholesterol	Timing of drugs adjusted to take account of social activities, sleeping late, etc.
	Imdur	Angina	Improvement noted when bisoprolol added as new drug, i.e. monitoring condition
	Lansoprazole	Stomach acid	Needed to buy drugs from pharmacist because of difficulties in obtaining prescription. Drugs dispensed in foil that had to be cut open with scissors
	Ramipri;	Blood pressure
	Digoxin	Heart
	Bisoprolol	Heart
	Furosemide	Fluid excess
	Clopidogrel	Blood thinning (action on platelets)
	Gliclazide	Diabetes
	Atrovent*	*No reason given
	Airomir*
	Becotide*
	Salbutamol*
C06 3 diary sheets	Thyroxine	Underactive thyroid	Notes that co‐proxamol needs changing (Co‐proxamol is no longer prescribed as an analgesic in the UK due to its risks when taken in overdose)
	Azathioprine	Lung fibrosis (Immunosuppressant/rheumatoid arthritis)
	Omeprazole	Double hiatus hernia (indigestion)
	Etodolac	Arthritis (pain and inflammation)
	Ferrous sulphate	Anaemia
	Prednisolone	Lung fibrosis (anti‐ inflammatory, steroid)
	Calcium and ergocalciferol	Osteoporosis
	Imdur	Heart disease (angina)
	Warfarin	DVT (anticoagulant)
	Co‐proxamol	Pacemaker (pain killer)
	Bumetanide	Lung fibrosis/heart? (diuretic)
	Imdur durule*	Ischaemic heart disease
	Nicorandil	*Reason not given
	Losartan*
	Fosamax*
OP08	Dispersible aspirin	Does not know reason	Suggested Tiotropium to GP
	Paracetamol	Pain killer
	Codeine	Pain killer
	Didronel	Prevention of osteoporosis	Taken after food. (Should leave 2 h before taking food, particularly calcium‐containing foods)
	Trusopt eye drops	Glaucoma
	Pulmicort	Emphysema
	Tiotropium	Emphysema
	Lactulose	Bowel help
OP12	Warfarin	Anticoagulant	Appeared confused as to whether remaining drugs should be taken
	Aspirin	Not being taken
	Furosemide	Reduce liquid in body
	Carvedilol	Reducing blood pressure
	Simvastatin	Reduce cholesterol
	4 other medicines on hospital list but not being taken
C13	Furosemide/potassium*	*Does not know reason
	Lercanidipine*
	Bisoprolol*
	Aspirin	Thinning of blood
	Seriraline*
	Rivastigmine	Dementia
	Ramipril	Blood pressure
	Oxybutinin*
	Atorvastatin*
	Goserelin implant	Prostate
C14	Aspirin	Thinning of blood	Delays in dispensing of repeat prescription – wasted journey to pharmacist. Long wait on second visit. Galantamine taken once daily but should be taken twice daily
	Levothyroxine	Thyroid condition
	Bisoprolol	Heart
	Furosemide	Water
	Galantamine	Memory (dementia)
	Simavastatin	Balance cholesterol
	Laxative
OP15	Lisinopril	Osteoporosis (hypertension)	Fosamax generally taken on Tuesday, occasionally Wednesday if has eaten
	Aspirin	Prevention of strokes	Becotide taken as necessary rather than regularly, as prescribed
	Ditropan	Water (urgency)
	Manevac	Constipation
	Adcal	Osteoporosis (Vitamin D supplement)
	Lactulose	No reason
	Fosamax/alendronic	No reason (osteoporosis)
	Becotide	Asthma
	Salbutamol	Asthma
	Atorvastatin	Not sure, probably osteoporosis. (Statin)
OP16	Digoxin	Heart, controlling rhythm	Diclofenac not stopped by GP when commenced warfarin – caused bleeding per rectum. Described as ‘an avoidable error’
	Finasteride	Water/prostate difficulties
	Tamsulosin	Water/prostate difficulties
	Warfarin	Heart (anticoagulant)
	Lactulose	Constipation	Full details provided of reasons for drugs. Worked out own system for warfarin
	Sennasides	Constipation
C19	Calcichew*	*No reason given
	Aspirin*
	Fluvastatin*
	Fosamax*
	Vitamin B12*

A median of seven medications was taken per person (range 5–15), illustrating the polypharmacy that is widely reported in older people. Seventeen of the 19 interviewees had experienced a change in medication whilst in hospital, a common occurrence for older people (see Table 2).

Table 2.

Summary of participants’ characteristics

Person involved in interview	Age and sex of person interviewed	Responsibility for medicines	Number of medicines taken	Medicine change in hospital	Diary completed?	Comments
C01	82, M	Fully responsible for wife’s medicines. Wife’s age 82	7 (plus oxygen)	Yes	Yes	Wife discharged from 1 week’s respite in hospice (palliative care) following recent discharge from hospital – medications changed by hospice.
OP2	75, M	Mostly responsible for own medicines. Wife also keeps a ‘watching eye’	10	Yes	Yes
CO3	83, F	Fully responsible for husband’s medicines. Husband’s age 85	4	Yes	Yes	Appeared confused regarding purpose and dose of medicines. Carer died during study husband referred to a nursing home
CO4	Not given, F	Fully responsible for mother’s medicines. Mother lives with her Mother’s age 90	6	Yes	Yes	Formal complaint made to hospital regarding poor experience of care and discharge process
CO5	75, F	Fully responsible for husband’s medicines. Husband’s age 78	13	Yes	Yes	Managed medicines through use of list given by hospital on discharge sometime ago and drugs book
CO6	Not given, F	Fully responsible for mother’s medicines. Mother lives with her. Mother’s age 90	15	Yes	Yes	Self‐developed list of mother’s medicines on computer
OP7	80, F	Fully responsible for own medicines	13	No	No	Evident that not taking all medicines as prescribed.
OP08	81, F	Fully responsible for own medicines	8	Yes	Yes	Showed errors in use of medicines
OP09	86, F	Fully responsible for own medicines	7	Yes	No	Initially showed an organized approach to medicines. Became confused after second admission to hospital during study
C10	80, F	Fully responsible for husband’s medicines. Husband’s age 84	7	Yes	No	Organized approach to medicines although did not know their purpose
C11	Not given, F	Fully responsible for mother’s medicines. Mother’s age not given	8	Yes	No	Mother died during study
OP12	78, M	Fully responsible for own medicines	9	Yes	Yes	Only taking 4 of prescribed medicines as did not receive information from hospital
C13	83, F	Fully responsible for husband’s medicines. Husband’s age 85	10	Yes	Yes
C14	Not given, M	Fully responsible for mother’s medicines. Mother’s age 94	7	Yes	Yes	Very organized approach to medicines
OP15	91, F	Fully responsible for own medicines	10	Yes	Yes	Had received wrong medicines with first repeat prescription post‐discharge
OP16	87, M	Fully responsible for own medicines	6	Yes	Yes
C17	Not given, F	Paid carers administer medicines although participant has contact with Father many times daily	5	No	No	Diary not completed as father died soon after discharge. Wanted interview to take place
		Father’s age 100
C18	Not given, F	Fully responsible for husband’s medicines. Husband’s age 84	11	Yes	No	Valued explanation of medicines by hospital pharmacist
C19	79, F	Believes she is responsible for husband’s medicines, although husband not in agreement with this. Husband’s age 81	4 (+2 injections every 3 months)	Yes	Yes	Prior nursing experience and thus felt confident with medicines

C, carer; OP, older person.

Of the 19 participants, five had had a positive experience of the discharge process, whilst the remainder of the sample had had a negative or mixed experience.

Five themes were evident in connection with medication and the discharge procedure:

• 1 Discharge in general
• 2 Obtaining medication for discharge
• 3 Information regarding discharge medication
• 4 Medication lists
• 5 Communication about medication in hospital and following discharge

These are discussed in detail below:

1. Discharge in general

The respondents described the large amount of time involved in waiting to be discharged from hospital and described the whole process as ‘an “anxious” time when you never quite know “what time you are going to be allowed to go home”’. The uncertainty of discharge time and date was identified as an area for improvement. It appeared that sometimes the patient is waiting for a long time and then, in other cases, the older person is suddenly given the news that they can go home.

Firstly it is to get a discharge date, which is not terribly easy …. they say ‘‘well, that’s what we think but until the Consultant does his rounds and confirms it, we’re not actually too sure about that” and so we had disappointments there that he didn’t clear her… and so we had another wait, so you’re never quite certain, you say, “You’re going home tomorrow”, “All right” and then you say, “Sorry, but you’ve got another day to go… (C01)

2. Obtaining medication for discharge

Considerable delays were often experienced in waiting to obtain the discharge medication. Some patients explained that this was partly due to their medication being prepared in the pharmacy and then waiting for the drugs to be brought up to the ward. Others suggested discharge was also dependent on how busy the ward was. Sometimes discharge took 1 or 2 h, and other respondents mentioned waiting up to 6 h.

No they did change something [medication] but we waited and waited and waited and eventually she came with it. I think we had to wait… I was told we could go home at 12 o’clock and we waited till 6 to get the medicines (C15)

Delays were also found when participants collected medication directly from the hospital pharmacy:

… And the worst part about it frankly was the fact that from the moment I left the ward, or the nurse who I’d last been talking to, and had the prescription given to me and said “right, go to the hospital pharmacy and you know draw the drugs out before you go away”. I had to sit there for an hour or more, to wait just for the medication (C16)

3. Information regarding discharge medication

Satisfaction with information received

Opinions about the nature and amount of information received about medication on discharge were generally mixed. Five of the 19 interviewees felt fairly happy with the way that medication was explained at the time of discharge. Of these five participants, however, two qualified their satisfaction by further explaining the ways in which they were active in ensuring they received the information they needed. Strategies that enabled participants to receive appropriate information included a self‐generated list of medicines and taking responsibility for ensuring appropriate communication.

For example, on admission, one older person (OP2) took in a sheet of paper he had prepared with all the medications listed, the dose required and a box of each type. This sheet helped to save time and helped the older person to fully understand the changes in medication:

…when you come out, the Consultant again would say ‘we’ll keep you on the same medication, he (OP) knows what they are’ and the only new one this time, he gave me one for thinning the blood (0P2)

One carer pointed out that she would always make a point of asking about the medication and felt it was her responsibility to check whether she did not understand/needed more information on individual medicines, etc. She did, however, feel that not everyone would have the confidence to do that:

… as I say I have a good relationship with the Dr, the specialist, and the nurses and my doctor, so everything was fine. I think that because I would ask if I had to, if I wasn’t happy, I would take it upon myself to ask. I think you have to be prepared to do that. I mean I would, but not everybody would. I mean I work with the doctors (C10)

Another carer referred to the importance of adequate communication. She felt satisfied with the amount of information received although she acknowledged that it was not particularly detailed. The carer believed this was because of her own lack of initiative in seeking detailed information about the medication rather than the responsibility of the professionals involved:

Yes, yes. They gave me a list of what they’d prescribed.

Int: And did you feel quite happy?

Yes, I don’t think I take it in about these medicines they’re there and I feel he’s got to take them, as I said to you before… (Laughs) I’m a bit lax about that, not knowing what they’re for (C06)

Inadequate information received

The remaining 14 participants, however, reported difficulties with the information they received about prescribed medications at discharge, with either little or no information provided or a general assumption on the part of the health‐care professional that the older person or carer understood fully the medications received in hospital:

That was a bit of an issue really …. there was no card to give any explanation and no nurses gave any explanation about it (C04)

She (nurse) just said ‘keep going with the routine that you’ve had here (OP8)

There was a general perception that the hospital staff, particularly nurses, had insufficient time to give appropriate information:

Well they say very little, they just say you’re on this and this and this, do you understand and they’re keen to get off (CO5)

Medicine changes in hospital

The majority (17/19) of older people in the study had had some of their medications changed during their most recent stay in hospital. Many older people or carers were disappointed in the lack of explanation they received when being given the (often completely new) discharge medicines. Some were not told the medication had changed and received no explanation. The confusing ‘bag’ of medications handed over and subsequent timing/dosage regimes were difficult to understand without explanations:

No more than looking at the tablets in the package and saying, “This is what you’ve got”. Never a comparison with what you came in with and what you’re going out with because quite often there were differences. No explanations of why and that … (C01)

Well they could have said some has been altered and it’s now this, because they sent some different to mine, which may have been the same under another name, when you know another factory is used (OP15)

Hospital practitioners, particularly nurses, were again perceived to be too busy to explain the different medication.

Inadequate explanations of new medicines and associated risks for the patient

Five participants asked for an explanation of their new medicines but received an inadequate reply. One older person described his/her experience of questioning the change in the number of medications:

Yes they said ‘doctor so and so decided you don’t need those and has taken them away’ (OP9)

Another carer (C06) had a query about a specific medication at discharge and felt she could not get any ‘sensible information on what the warfarin dosage was meant to be’. The carer felt she had to ‘go charging round to try and find somebody’ and was not really sure if she ever received the ‘correct’ answer.

Inadequate explanations extended even to a situation in which morphine, a controlled drug, was the newly prescribed medication. Prescription of a controlled drug should always be accompanied by explanations of its use and the need to store the drug safely to prevent inappropriate use. ²² A carer described her experience of being handed morphine at discharge in a very relaxed manner, whilst on the ward, the control of the medication had been very strict:

The day she came out I was handed two packets, two boxes of the MST (Morphine Sulphate Tablets), a 5 mg and a 10 mg and a bottle of Oramorph, no explanation of what I’d got to do with them. “Oh that’s what you’ll need to go home with, plus all her other medicine”. And I said “well if this is the morphine, surely you should tell me what I’ve got to do”. “Oh it’s all on the bottle, it’s all on the packets” and that was it. … I haven’t a clue even how to pronounce them, let alone how to give them out and I’m just handed it and expected that you know what to do and you don’t (C11)

This carer clearly struggled with the difficult adjustment that had to be made between hospital where the staff strictly controlled the medicines and then discharge home where she was left in charge of complex and potentially dangerous medicines, with little preparation or support for this role.

Inadequate explanation of medicines at the time of discharge can lead to confusion and anxiety for patients/carers with the risk that the medicines will not be taken as prescribed. One older person (OP12) who had been handed a bag of medication at discharge, with little explanation, was very unsure of how he was meant to take this. He felt he had not been involved, and the bag had not been opened whilst in hospital. He had just been handed a bag and expected to go home and start taking the medication. As the interview progressed, it became clear that the older person was very uncertain of how he was meant to take his medication and, because he did not recognize some of the medicines, he had decided not to take them:

What one is that? You see this is another thing, nothing’s been explained to me! I’ve never seen that one before in my life! It was in the bag when I came out of hospital!” (OP12)

The interviewer established that four medications of nine were not being taken because the older person did not know their purpose. The patient was also concerned to find that he had been advised to take warfarin and aspirin, which should not be taken together. He explained that he felt very stressed because ‘you don’t know what the hell to do, do you?’

Sadly, this patient added, ‘I was quietly confident of all my medication before, but since coming out of hospital I’m totally lost’ (OP12). The hospital experience had undermined his confidence concerning the daily medication regime leaving him feeling helpless and vulnerable.

4. Medication lists

It appeared that the majority of individuals did not receive any written guide to their discharge medication or had never received such a list. Those interviewees who received a list of medicines when being discharged from hospital reported they found the list very ‘complicated’ and difficult to understand:

It was more complicated because it was written in a small space and written in smallish letters and it had got t.d.s. and it had got b.d… Well I mean I understand it but a lot of people wouldn’t (C05) (t.d.s. and b.d. are abbreviations for Latin words used as shorthand for three or twice daily commonly used in health care settings).

Examples of ‘good’ lists

One carer (C01) received a very informative, well‐presented medication list from a hospice, where the patient had previously spent some time, but not from the hospital from where she had been recently discharged. The hospice list was viewed by this carer as the ‘clearest and best document I’ve ever had from anybody’. (C01)

Another carer spoke of an ‘excellent’ list received from a ‘medical ward’ (C05), and another described a card they had received as part of a previous discharge from hospital that was very clear but had not been received during their most recent discharge:

Yes, I mean it would have been easier had we had a card, which would say, the one we had when Mum came out after the stroke, from (name of) Hospital, said every medication, when she would take it, how often in the day and essentially what it was for. So you know something like that would have been very helpful” (C04)

Home‐made charts

Two participants or their carers or wider family members chose to make their own guide to taking the medicines, especially when this involved a number of family members sharing the care. In the case below, health professionals visiting the home also used the chart made by the carer’s niece:

I must admit it was extremely helpful because if I had started the medicine and given them [to her mother] and I had to go out, my sister came in and she knew exactly what I’d given her, it was written down what times and she just continued and the same with my niece when she came in, she could do it, so…. And the District Nurses used to come in, I had it on the side of the kitchen cabinet and they used to come in and look down ‘oh yes, she’s had so and so today’… (C11)

5. Communication about medication whilst in hospital and following discharge

Participants described several examples of errors in treatment that were either because of, or made worse by, poor communication between patients or carers and other hospitals.

Two patients had not received the correct medication whilst in hospital. The mistakes only came to light when the discharge medication was handed out. One family member realized her mother had not been given her breast cancer pill whilst in hospital (C04). This was only noticed (by the family) when the particular medicine was absent from the discharge list of medication.

A carer (C01), whose wife had recently been in a hospice (as above), appreciated the clarity of the document he had received at discharge but was confused by the changes in medication that appeared on the sheet. Five medications had changed without explanation. One medication, which had been stopped in the hospice because of nosebleeds, had never been re‐introduced. This meant that the older person had been without the medication for 9 days (7 days in the hospice and two at home). The carer only noticed the omission after careful examination of the discharge medication list.

For one participant, there were difficulties with medication when his mother was transferred to a second hospital. The hospital refused to let her take medication supplied by the initial hospital and, in addition, appeared reluctant to communicate with the referring hospital about the supplied medicine, leading to the patient not receiving it for 4–5 days.

Participants were very clear about the ways in which their experience of the discharge process could be improved through better communication. Carers and older people felt strongly that they needed to be involved in the discharge process and that they should be better prepared in hospital to manage their medicines appropriately post‐discharge. Better communication between staff, patients and carers could, it was felt, significantly improve the hospital discharge procedure.

The value of clear, concise lists of prescribed medicines was emphasized by many participants, and, for some, the pharmacist would be the most appropriate professional to explain the medicines:

The ideal thing is to have a list and to have somebody who sits down and explains it all, that’s the ideal thing… I think the ideal thing would be to have a pharmacist available to explain it before you leave (C05)

Participants highlighted the need for prompt and effective communication between the hospital and their GP and community pharmacist as they clearly felt that the responsibility for this was a particular burden:

…well they do give you a thing from the hospital to give to your doctor just saying you’re home and then on that, with that should be all the drugs. So then you’ve got to make sure that the surgery puts the drugs onto the record…it’s even more daunting and then I mean you have to juggle with the chemist and the repeat prescriptions and goodness knows what (C05)

Discussion

This is a relatively small study, and caution is necessary in interpreting its results. There was however considerable agreement between participants, most of whom had had a poor experience of their hospital discharge, and there was evidence that a planned approach to discharge only happened for a small number of patients. Very little information was provided about medicines at discharge, even though many of these had been changed during their hospital stay.

Participants were able to articulate clearly the ways in which there could be better management of their medicines at discharge, in particular the need for improved communication to allow them to be involved in decisions about their medicines. The provision of better information about medicines was emphasized, including the need for appropriately designed written lists to supplement any verbal information received. The need for improved communication with general practitioners and community pharmacists was also highlighted as important.

The majority of participants had a poor experience of the discharge process, with uncertain information about the time of discharge and subsequent delays in receiving their medicines, despite the policy guidance relating to this aspect of the patient’s health‐care journey, which emphasizes the need for a planned approach to discharge, including mechanisms to ensure the patient’s safe use of prescribed medicines. ¹¹ , ¹² , ²² , ²³ , ²⁴ Research has shown that partnership with the patient and carer is essential in order to achieve the patient’s appropriate use of medicines and thereby improve patient safety, reduce unnecessary admissions to hospital because of preventable medicine‐related issues and, ultimately, reduce costs. ⁷ , ⁸ , ⁹ , ¹⁰

Partnership and negotiated agreement with patients, which takes account of their beliefs and concerns about using medication, is also seen as central to the successful use of medicines. ²⁵ , ²⁶ , ²⁷ In the United Kingdom, recent guidance presents a synthesis of available research evidence to identify strategies essential to the facilitation of patient adherence to medicines. ³ It suggests all patients must have the opportunity to be involved in decisions about their medicines at the level they wish, with health‐care professionals adapting their consultation style to meet individual need. Comprehensive information about the medicines should be given, including details of any side‐effects or possible risks, and the information should be made accessible and understandable for each patient without any medical jargon as well as including, where necessary, the use of pictures, large print or symbols. In addition, the patient’s ability to take the medicines as prescribed must be assessed and practical support provided when required.

Despite relative advancement with respect to the existence of policies, implementation remains problematic. The patient and carers’ experience in this study showed minimal evidence of the use in practice of any such strategies to enhance the medicines information provided or to develop partnership working, leading to some participants not taking or receiving their medicines as prescribed. Whilst the number of older people affected in this way is relatively small, there was evidence that both carers and older people made a particular effort to ensure they were not disadvantaged by the lack of information about medicines received at discharge, including developing their own lists and seeking further information.

Participants emphasized the importance of improved communication about their medicines between the hospital and their general practitioner and community pharmacists. Research has confirmed the value of good communication between primary and secondary care settings in reducing medication errors at the time of hospital discharge or other transition points in the patient journey. ⁵ , ²⁸ , ²⁹ The value of pharmacist involvement in discharge planning to ensure patient safety and appropriate use of medicines has also been emphasized ³⁰ and the small number of study participants who experienced pharmacist involvement in their discharge valued this role.

Participants in this study were therefore able to articulate clearly the problems they encountered with the discharge process and the ways in which it could be enhanced, particularly in relation to the management of their medicines. The recommendations they made have actually been included within policy guidance on the discharge process over the last 10 years. It is therefore of particular concern that, despite such policy directives, problems with hospital discharge still appear to be evident.

Conclusions

• 1 The experiences of participants interviewed in the current study suggest that standards required within policy guidance documents concerning discharge processes regarding medication use are not being met.
• 2 Managing medicines at the interface between hospital and primary care, in particular during discharge, is an area with scope for improved communication and the development of effective partnerships between the hospital, older people, carers and primary care professionals.
• 3 Lack of clear verbal or written explanation of discharge medication can lead to incorrect use of medicine at home and confusion and anxiety for older people and their carers.
• 4 Previous studies have highlighted that older patients with polycomorbidity are at risk of medication misadventure in the immediate post‐discharge period. Therefore, endeavours that enhance effective communication about medicines to patients during the discharge process from hospital are likely to reduce medication misadventure.

Acknowledgement

The study was funded by the Hertfordshire Primary Care Research Network (HertNet).

Conflict of interest

No conflicts of interest are believed to exist.