Caregiver Experience of ‘Just-in-Case’ Medicines
Research type
Research Study
Full title
Caregiver experience of ‘just-in-case’ medicines to support end of life care at home: exploring the perspectives of bereaved caregivers in relation to ‘just-in-case’ injectable medicines to manage symptoms at the end of life in the home setting.
IRAS ID
233474
Contact name
Christina Faull
Contact email
Sponsor organisation
University Hospitals of Leicester
Duration of Study in the UK
0 years, 11 months, 28 days
Research summary
Summary of Research
More than half of patients with a terminal diagnosis would prefer to die at home. It is known that patients at the end of life commonly experience one or more troublesome symptoms which may include pain, nausea and vomiting, agitation and respiratory secretions. If these symptoms are severe and not managed swiftly and sufficiently within the home, patients and their families may seek admission to a care setting to ensure comfort. The patient may therefore not fulfil their wish to die at home. Provision of anticipatory or ‘just-in-case’ medicines within patients’ homes, so they are readily available to visiting health care professionals, both within and out of hours, is a way of promptly managing symptoms and facilitating dying at home. Medicines are prescribed in subcutaneous injectable form to guarantee administration in a dying patient who may not be able to manage oral medications.There is little published evidence regarding the experience of caregivers in relation to the use of subcutaneous ‘just-in-case’ medicines.
This is an exploratory qualitative study with two stages:
Stage 1 - Bereaved caregivers completing a postal questionnaire.
Stage 2 - Participation of bereaved caregivers in semi-structured interviews. with a researcher.The aims of the study are:
- To explore the experiences of bereaved caregivers with regards to the provision and administration of ‘just-in-case’ injectable medicines to manage symptoms at the end of life within the home setting. Particular emphasis will be placed on any perceived benefits to such medicines, any negative consequences and any barriers to providing such management.
- To add to the existing limited evidence base regarding what members of the public in general think about ‘just-in-case’ medicines to support symptom control as part of end of life care in the home setting.
- To identify healthcare professionals’ training needs to support their practice.Summary of Results
Introduction
This mixed methods study explored the experiences of bereaved family or friend caregivers, of patients who had contact with the LOROS hospice specialist palliative care services, with regards to the provision and administration of just-in-case injectable medicines. Particular emphasis was placed on understanding any perceived benefits to such medicines, any barriers to providing such management, any negative experiences and ways to improve care for patients and their families.The study was awarded a grant from the Mason Medical Research Trust in April 2019.
Background
More than half of patients with a terminal diagnosis would prefer to die at home1. It is known that patients at the end of life commonly experience one or more troublesome symptoms which may include pain, nausea and vomiting, agitation and respiratory secretions. At this stage patients are unable to swallow their medications and require injections. If these symptoms are severe and not managed swiftly and sufficiently within the home, patients and their families may suffer and might seek admission to a care setting to ensure comfort. The patient may therefore not fulfil their wish to die at home and may suffer significant distress in the last days of life2. Provision of anticipatory or just-in-case injectable medicines within patients’ homes, so they are readily available to visiting health care professionals both within and out of hours, is a way of promptly managing symptoms and facilitating dying at home3,4.
Just-in case medicines are recommended in the National Institute of Health and Care excellence (NICE) guidelines on care of dying adults in the last days of life5. Patients may typically be given 30 vials of four different medications and water for injection including morphine for pain, midazolam for distress, levomepromazine or haloperidol for nausea and vomiting and glycopyrronium for respiratory secretions. The patient also needs needles and syringes to be stored with the vials of medication along with instructions and authorisations for how the medicines might be used by any visiting health professional. There is some published evidence, including work from the LOROS research team detailing the experiences and the challenges identified by health professionals in utilising anticipatory medicines2,4.
The National End of Life Care Strategy (2008) encourages staff to engage with family and friend caregivers as ‘co-workers’ in helping to manage a patient dying at home6. While there is some evidence surrounding the experience of caregivers holding responsibility for a patient’s regular medicines and oral ‘as needed’ medication7, there is an absence of published evidence regarding the experience of caregivers in relation to the just-in-case injectable medicines for use in the last days of the patients life.
Little is known of what is explained to caregivers regarding these medicines, how they facilitate a patient receiving an injection, the perceived benefits and / or adverse effects of injections, if there are disagreements with staff regarding the use of such medicines and whether from the caregiver’s perspective, the provision of injectable medicines allowed a comfortable death at home and prevented admissions to care settings. Understanding such issues can feed into the training of Health Care Professionals and identify improvements in care.
Design and methods
The research questions were:
• What are the experiences of caregivers who are known to LOROS of discussing, receiving, storing, and making use of just-in-case injectable medicines for patients who are cared for at home in the last days of their life?
• What can we learn from these experiences that could inform the practices and training of health professionals?This was an exploratory mixed methods study aiming to scope and explore in detail the experiences and views of participants through postal questionnaires and interviews.
Primary Objectives
To scope and explore the experiences of bereaved caregivers with regards to the provision and administration of just-in-case injectable medicines. Particular emphasis was placed on any perceived benefits to such medicines, any barriers to providing such management, any negative consequences and ways to improve care.Secondary Objectives
• To add to the existing limited evidence base regarding what service users think about just-in-case medicines to support symptom control as part of end of life care in the home.
• To identify what should be included in the training of health care professionals about the discussion, prescription, authorisation, and use of just-in-case medicines.The project was undertaken in two stages:
Stage 1 – Postal questionnaire.
Caregivers of patients with anticipatory just-in-case medicines in the home were identified from LOROS hospice consecutive discharges and community specialist nurse documentation on the database SystmOne. Caregivers whose bereavement was between 3 and 9 months ago were sent a letter of invitation and, in the same envelope a further sealed envelope containing a participant information sheet a questionnaire and reply paid envelope, which they opened should they wish to consider participating.Inclusion Criteria
• Aged 18 years or over.
• Acted as a caregiver for their terminally ill relative or friend.
• Where the patient was known from LOROS patient notes to have had just-in-case medicines in the home setting
• Were bereaved more than 3 months and less than 9 months prior to being contacted.
• Able to read and speak English to a level of fluency to be able to: contribute their views, read and understand the Participant Information Sheet, provide informed consent and understand the written statements about just-in-case medicines.
• Willing and able to give informed consent.Exclusion Criteria
• Less than 18 years of age.
• Bereaved of a close relative or friend within the previous 3 months or beyond 9 months.
• The patient was not identified in their LOROS notes as having had just-in-case medicines.
• Not able to read and speak English to a level of fluency to be able to: contribute their views, read and understand the Participant Information Sheet, provide informed consent and understand the written statements about just-in-case medicines.
• Unable or unwilling to give informed consent.A response rate of 30-50% was anticipated based on the use of questionnaires to family carers in previous research in palliative care.
The questionnaire survey acted as a scoping study of experiences and also as a screening tool for identification of participants for exploration of the diversity of experiences in depth through one to one interview.
Quantitative responses to the questionnaire were analysed using descriptive statistics and free text comments were analysed thematically.
Participants who completed the postal questionnaire were asked to indicate whether they would also be willing to take part in an approximately 1-hour long, either face-to-face or telephone interview with a researcher in the participant’s place of choice of either LOROS hospice or their home.Stage 2 – Semi-structured interview with a researcher.
A purposive sampling frame was used to approach participants for interview to include exploration of the diversity barriers and where the care-giver felt there were problems or concerns as well as examples of where the practice worked well and care-givers had positive experiences indicated on the questionnaire.Respondents to the questionnaire who were willing to be approached for an interview were sampled for diversity in:
• Use/non-use of anticipatory medications
• Identification of problems and absence of problems in use of anticipatory medication
• Relationship to the deceased.Because of the sensitivity of the subject matter, there was a risk that the participants could experience distress as a result of discussing the death of their relative or friend. The interviews will be handled sensitively and undertaken by an experienced palliative care clinician, Alison Pilsworth. This risk was further minimised by including a preparatory, unrecorded conversation before data collection where the sensitivity of the area was acknowledged, and the interviewee was told they should not feel pressurised to divulge experiences or views that might later give them cause for concern. No pressure was put on participants to talk about topics that they prefer not to discuss, and they were be able to stop at any point during the interview if they became distressed.
Participants were informed at the start and the end of the interview that they can contact the research team should they become concerned or distressed about any issues raised in the interview. Support for participants was discussed as part of the interview.
A topic guide for the interview was used flexibly to explore issues of importance to individual interviewees. Participants were asked to give detailed narrative about their experiences and opinions. Reflection was encouraged about: what went well, what were the issues, how were they resolved, what were the outcomes, what might have been done better, and what do we need to focus on in supporting patients and carers.
The topic guide underwent continual development in response to themes emerging during interviews.
Interviews were audio recorded and transcribed. Interview transcripts were analysed thematically developed through an iterative process of reflection, coding and research discussion, drawing on a priori issues and questions derived from the aims and objectives of the study, as well as in vivo issues raised by respondents8.
Initial interviews were subject to open coding by at least two researchers (Alison Pilsworh and Anne Patterson) and a coding frame was developed through an iterative process of independent coding, comparison and discussion until consensus and stability was achieved.
A “letter of over subscription” was sent by post to people who had shown an interest in the interview stage of the study but who were not part of the interview sample.
A post interview letter was sent to interview participants thanking them for their participation and signposting to support if required.
Patient and Public Involvement
This research study questions, design and participant materials have been informed by PPI in the following ways:
• The work of Dr Edward Rainbow, as part of an MSc in Palliative Care at De Montfort University. In this work Dr Rainbow talked with two bereaved carers about their experiences of just-in-case medications. This has influenced the design and the topic guide for the interviews and the questionnaire
• Lay reading of participant materials for language and readability and to optimise sensitivity in approach.
• Lay carer representative to the LOROS Research Committee has collaborated in the writing of the participant materials and discussed the topic content of the questionnaire.
• Lay (bereaved carer) piloting of the questionnaireStudy timeline
Funding was received 19th April 2019
NHS research ethics committee favorable opinion was given 7th May 2019
Sponsor Green light was given 4th July 2019
Questionnaires were sent out between 23rd August 2019 and 22nd January 2020. Last questionnaire returned 27th February 2020
Interviews commenced October 2019 and ended February 2020Screening, Recruitment and Sampling
Screening
To identify 100 people to send the questionnaire to over 1000 deceased patients notes were screened to identify those for whom anticipatory injectable medications had been prescribed, where a next of kin was contactable and their family member had died in the previous 3-9 months.Potential participants were also checked to be sure that there was no annotations made that
a) they may NOT wish to be contacted
or
b) any concerns indicated by staff about including them as a participant38 questionnaires were returned with the following characteristics of the respondents
Participant Gender Number %
Male 14 36.8
Female 24 63.2Relationship to deceased Number %
Spouse 25 65.8
Daughter 8 21
Son 1 2.6
Sibling 2 5.3
Other relative or friend 2 5.3
Not recorded 0 0Deceased Gender Number %
Male 21 55.3
Female 17 44.7Deceased Age Number %
40-50 2 5.3
51-60 7 18.4
61-70 9 23.7
71-80 10 26.3
81-90 10 26.3
Not recorded 0 0Deceased Ethnicity Number %
White British 34 89.5
Indian 2 5.3
Other 2 5.3
Not recorded 0 0Diagnosis Number %
Cancer 31 81.6
MND 1 2.6
Respiratory 2 5.3
Cardiac 2 5.3
Other 2 5.3
Not recorded 0 0Place of Death Number %
Home 24 63.2
Hospice 9 23.7
Care Home 4 10.5
Hospital 1 2.6
Not recorded 0 029 respondents indicated their agreement to be approached about and an interview and 17 people linked to 14 patients were purposively sampled and recruited to the second phase of the study.
Findings from the Questionnaire
35/38 respondents recalled having injectable medicines in the home and they were recalled by 53% of people as being used.
What did people say about how they felt about having these medicines in the house?
3 people did not write a commentMost people felt relieved, reassured and that it was a useful thing to have more powerful medicines available for professionals when called.
• I didn`t mind at all. As I couldn`t give them I put them out of my mind but knew there was something here in case of emergency.However comments show the additional impacts beyond this positive response.
• It was just horrible having the just in case meds. To top it all up once my husband passed away all the meds became waste. LOROS will not take it back. Took it to a chemist.
• Happy to have them as it meant my sister could probably get pain relief more quickly if the drugs were in the house. I may have been less happy if there had been a chance of them getting in to the wrong hands eg children
• Initially I was very anxious. However, when I thought about it I felt reassured that *** would be comfortable at all times.
• Having so many controlled drugs in the house is a huge responsibility for carers. It is also distressing in that it highlights a finality to the life of the patient.
• Not a problem but probably would have preferred a secure case to store them in.
• I understood that it was beneficial to have them on the premises. I remember how hard I found explaining the need for them to the children.
• Bit daunting as had to hide them away from my husband as he was in denial about his illness and upset me as I felt I wasn’t being honest with him and worried he might find them too. Brought home fact how bad things were and how close to death.
• When I was given the prescription for the "end of life" 3 injections, it was after almost 3 years. The prescription made me realise that the inevitable was close after 47 years together. Having spoken to each other often about this, we both agreed that because of our love for one another we couldn’t see the other one suffer unnecessarily.
• Upset. They were bought immediately following my husbands first fall when he was relatively well and it was six months before he died.
• I felt a bit nervous just in case my husband had a reaction to the medicines.What information people recalled being given when JIC medicines were first put in the house
What information were you given when these were first put in to the house? Number %
An explanation was given 27 71
There was no explanation 4 10.5
I can't remember 2 5.3
Not recorded 5 13.28 people did not write an additional comment but many gave more detail about the explanation which shows a diversity of things that they recall being explained.
Broad brush rationale
• The explanation was just in case my husband needed meds
• No problem as I would have relied on the healthcare professionals attending to decide which medication was appropriate
• They were for emergency and in case the chemist was closed at the weekend and only to be used by the district nurse.
• I was told to keep the medication to hand but I put them out of sight and only brought them out when the district nurses asked to see them. There was no other explanation but I guessed what they were for.More detail about why they might be needed
• I was given an explanation by my GP. He told me what symptoms they would be used for. I can`t remember them ever being used.
• Each medicine was explained to me, why it may be required, who would administer etc.
• We were told about each individual medicine and how/when they could/would be used. The reality of this was a little daunting as it confirmed advanced fears of the future, but also helped us to understand what could be used when the time came.Other aspects people remembered
• It was explained - but I can`t remember all that was told. Only that it would help if my husband became agitated.
• I was told the medicines were to be administered only by registered people if *** was clearly in distress or pain. I`m sure I was told other things too, but that was the message that got through!
• These were end of life medication
• The injections were always explained as "end of life" and were to help make the person comfortable in their final hours..
• The need to keep them under lock and key was explained but this was impracticable - with older children I was not concerned.Respondents’ thoughts about the value of written information
42% of people thought written information would be useful but 37% thought it would not be. Their comments gave insight in to their yes/no viewThose who thought it would be useful
• Written information is always good: Sometimes its easy to forget the detail in the heat of the moment and it’s something to refer back to.
• It would have been helpful to see written information on each medicine for the family, but for the person dying I`m not so sure it would depend on how they felt about dying.Those who thought it would not be useful
• I had enough to deal with other tablets and the circumstances I was in. I didn`t need any more information on something I had no control over.
• What information would have been useful when you can`t administer it yourself?
• No not really. Looking after ***.I really did not want to think too much about medicines I know nothing about. I had to trust the Doctors and nurses etc. which I did.
• Each of the medicines were well documented in the files kept with them, and each dose given was recorded. All this information was available for me to see.
• So I understood what they were all for. Personally I prefer to know all facts and have information so know what to expect.
• It would have been better to have been told verbally I thinkThe circumstances of the JIC being used.
Medications were reported as used mostly for pain and distress or agitation and free text mostly described good experiences of care and effect.
The D/N very helpful as it helped to keep **** going until our wedding. That`s all he wanted so thanks for all your help.
My partner was in tremendous pain in the early hours, so being on my own I dialed 111 and a doctor came out and gave him an injection, which helped
Mum stopped eating and able to swallow on Good Friday this year. As it was a bank holiday, I don’t know what we would have done without these being here. Out of hours nurse came that night to give her an injection to calm her. Next day a syringe driver was installed.
Midazolam was given when **** became anxious and morphine was given to control the pain. Always effective. Each dose was given by the nurse and in the latter stages was given via a syringe driver (again administered by the nurse). Nurses always arrived in a timely manner.
I rang the evening nurses as my husband was increasingly agitated. They arrived promptly and administered the required drug to try and settle him.
My father was given morphine by injection into his tummy 1st(previous to this I had been giving morphine orally prescribed by his GP).As his pain increased the nurse gave the injection1st then as the pain ad distress worsened the syringe driver was fitted. I believe this was all given at the correct time, as my father deteriorated, he was never left in pain or distress for long. I just rang and a nurse came out within 20/30 minutes.
But some respondents noted delays in attendance because of pressure on the system
Other problems in effectiveness were also reported
My husband was getting agitated and aggressive. I called the district nurse she came in about 15-20 mins but he`d gone to sleep. She gave him a `half dose` because he hadn`t had it before! Anyway, he woke up about 2 hours later and was just shouting all the time. I called the district nurse again and it took her 4 hours to get to us.It was given for pain relief (also through a syringe driver),sedation for agitation and to reduce secretions. District nurses and Hospice at Home administered the medication. It did help but wasn`t always enough.
The perceived benefits of JIC medications
Were there any benefits of having the 'just in case' medicines available? Number %
Yes 33 86.8
No 1 2.6
Not sure 2 5.3
Not recorded 2 5.3The vast majority (87%) of people responding thought there were benefits to having the medications. The benefits noted were:
• Peace of mind.
I could ring the District nurse or Macmillan nurse and I just knew they would help him.It helped my mum’s anxiety knowing they were here if needed and also reassured me.
• Quick and easy access to pain and symptom relief
They were first used in the middle of the night so were ready to use.My wife would have been in great discomfort otherwise
• Reduced stress in obtaining drugs:
Did not have to wait for chemist to prepare prescription, especially over a weekendNo running to the chemist at the last moment
When I was originally given the prescription, the chemist didn`t have one of the items and couldn’t get it for a couple of days. It was reassuring to know it was available at my sister`s house when she needed it, instead of having to go around several chemist`s in an emergency.
Also could get it from the chemist in advance and not worry if it was in stock etc.
• A bridge to other care:
It helped **** stay at home longer and we were able to get married and then we went to LOROS to support us for our `honeymoon` for 14 days until his death. Thanks you were all so good.Being a bank holiday, not all pharmacies are open, if we hadn`t got these i`m not sure what would have happened. It was a massive comfort knowing we had them. Mum deteriorated very quickly, she was able to eat and swallow up to the Friday and then stopped. She passed away Bank holiday Monday.
One person was concerned about waste when not used. Suggesting smaller, more frequently acquired lots.
The problem(s) that people encountered
Only fourteen (37%) of respondents had not experienced any of the problems. The most frequently identified, by 29%, was delay in the health professional attending.
• Delay in Hospice at Home attending due to floods in the Barrow on Soar area. Another delay due to the message not being passed to the relevant team.
• Delay was up to 4 hours for nurse to attend to give injection. When you are in excruciating pain, this is far to long.Did you experience any of the following problems?
Yes (%) No
(%) Not sure
(%) Not recorded (%)
Problems having the medicines in the home 3 (8) 30 (79) 0 5 (13)
Deciding when to call for help 8 (21) 24 (63) 1 (3) 5 (13)
Knowing who to call for help 6 (16) 28 (74) 0 4 (11)
Delays in HCP attending 11 (29) 22 (58) 0 5 (13)
Knowledge of HCP attending 9 (24) 23 (61) 0 6 (16)
Injections not working well enough 4 (11) 25 (66) 2 (5) 7 (18)
Delays in getting the injectable medicines 7 18) 24 (63) 1 (3) 6 (16)
Not having the correct medicine 1 (3) 28 (74) 2 (5) 7 (18)
Other problems 4 (11) 24 (63) 1 (3) 9 (24)• Delays in getting the injectable medicines:
Obtaining the medicines was VERY difficult because no pharmacy in Market Harborough had them all in stock. It was only through the kindness of one who lent some medicine to another that the prescription was filled.I had to visit four chemists to get them
• Symptom management not being adequate
Initially the injections given were not of a high enough dose to make the patient comfortable. This caused a lot of distress mainly for the patient, but also for family members who were main carers.After 3 doses of the drugs we had and without any effect, the nurses got on the phone to a doctor, one of the nurses had to leave to get the authorisation and by the time she came back my husband had passed away.
I felt the injection for secretions didn’t work well enough(I cant remember the name of it).My father still had so much fluid in the base/back of his throat. I rang to ask for advise as Dad was struggling to breathe through the fluid. The nurses came out and told me they couldn’t administer anymore. The secretions were bubbling up out of his mouth and Dad found this very distressing as I did as his daughter and carer.
Other problems that were written about:
• Advice of disposal
• Would have liked to know more about the final days.
• When my husband began to deteriorate rapidly on the day he died, I initially called the district nurse service. She explained our GP had to visit 1st before she could administer the drugs.
• Didn’t actually get any help or information from LOROS. Was told they only work 9-5
• Injection in arm were very painful. I suggested using stomach area which was much better and used.
• Where to keep medicines, out of sight as big bag!
• In hindsight, I should have called LOROS/DN to home the night before morning **** died as he was agitated but I was so tired I didn’t realise this was a symptom and close to death, they might have been able to settle him better, which makes me feel bad.
• None of the nursing staff carried oxygen level monitors. I knew they were low as I had bought one myself. Nobody would look at increasing the prescription for the oxygenRespondents comments on how the experience might have been improved?
There were a lot of comments expressing gratitude and satisfaction.
In my case nobody could have done better. All the nurses,GP and everybody else involved were excellent.I don`t know how it could have been improved. If the medicines were not here, I don`t think I could have looked after him at home. For that I am extremely grateful. That is what *** wanted. To stay at home.
The comments of some respondents were very emotive and impactful.
Nightmare of watching my wife in extreme agony. Everyone concerned did their best, but the system is overloadedMy experience was perhaps not typical but if the first nurse had given the full amount I might not have needed the second visit and my husband (and myself) would not have been so upset.
On the whole care professionals gave an excellent service, however the time spent alone with the patient was lengthy and this was very distressing at times when the patient was in pain and suffered a lot of agitation.
People asked for improvements in directly or indirectly by telling of their regrets and distress:
• Clarity and provision in arrangements for return/disposal of drugs
• Obtaining and collection of equipment
• My biggest regret is that she was unable to spend her end of life with her wonderful friends and staff at the LOROS hospice.
• Just to ensure people attending are aware of what, when and how much to give and if not sure to seek assistance.
• Waiting hours for a private ambulance was difficult. He was being taken back to the hospice and we felt helpless.
• I was able to keep my mother at home with very good support from the LOROS staff and community care services.The only problem at a time of great stress having to fight for assistance from care services and I struggled for a while (not LOROS assistance they helped a lot straight from the outset).
• After my husband/father died we received little to no contact from LOROS except for a card maybe a week or two later. I feel this could be improved upon greatly by offering more support, maybe just a phone call to ask if we are ok.
• Quicker response by on call nurses.I was giving *** oramorph and I was capable of giving injections.
• As caring from home, I didn’t know what to expect and I think more info on what action to take for certain symptoms and when to call for help versus severity of things….. I just got on with it but probably needed help the day before, felt a bit alone in it and hard to ask for help.
• Regarding the end of life injections - No. Regarding her treatment generally, apart from the last 8 days of her life spent in LOROS where her treatment and care were beyond reproach. The previous 6 months were fraught with lack of communication, misdiagnosis and lack of empathy. My wife died of PE the cancer she had fought for nearly 3 years was the secondary cause of death.
• Medicines in stock!
• I wanted to care for my Dad at home as this was his wish. I would have liked his passing to have been more peaceful
• More information would have helped. I had no experience of looking after a sick person. The nursing help, doctor and carers were there but I never knew how ill my husband was. I`m still not sure I did everything right and because of the medication on his last day I never got to say goodbye.Interview findings
Using the sampling frame 17 people linked to 14 patients were recruited for interviews and had the following characteristics (see table below)
We sampled where
• Medicines were not used N=1
• Medicines used and there had been no problems N=6
• Medicines used and problems had been noted n=8
• Carers lived in the same house as the patient e n=9
• Carers who did not live in same house n=5Our sample consisted of 10 spouses (seven husbands, three wives), two daughters (and two others interviewed with their parent), one sister and one cousin (and one other cousin participant in a dual interview)
Ten patients had died at home, three in a care home and one in LOROS Hospice. 71% had had cancer. All patients and interview participants were white British. The patients ranged in age between 41 and 85 years.
Table: The characteristics of the interviewees
JIC not used No Problems Yes problems Relationship to deceased Ethnicity Deceased Age Place of death Diagnosis Deceased Gender
y husband m White British 84 Care home cancer f
Y Y cousins x 2 f White British 76 home MND m
y wife f White British 54 home cancer m
Y husband and daughter m White British 78 Care home respiratory f
Y wife f White British 66 Care home cancer n
y husband m White British 41 hospice cancer m
y husband m White British 66 home cancer f
y husband m White British 73 home respiratory & vascular dementia f
y wife f White British 72 home cancer m
y daughter f White British 85 home cancer m
y daughters x2 f White British 83 home cancer f
y sibling f White British 56 home cancer m
y husband m White British 70 home f
y husband m White British 56 home cancer fFindings
The analysis identified themes:
• Communication and miscommunication
• Challenges associated with obtaining, storing and disposing of unused medication
• Experiences at the point of needing symptom management
• Systemic failings and barriers
• Caregiver perspectives on administering JiC medicationsCommunication/Miscommunication
Some participant recalled that no one had told them (the patients or relatives) what they were for
No explanation was received at all
E11 “No to be honest they didn't, but it was quite weird because I know the nurses what came out to use (The JIC meds) they knew me from working in homes so maybe that was why they didn't explain to us. (That he was dying)Some patients and relatives were not told directly and made an educated guess what they were for
E19 “Yes. So we knew what they were for (The medications). But nobody actually explained it to us.”
For others It was a shock when they were discussed, specifically that they were in place because their relative was dying.
E01 “ was sort of staring in the abyss and I thought you know what is going to happen, how am I going to be able to manage this. I had not realised the full implications of the medications I had not been told (that she was dying) at that time you see. …..”
E18 “..Which I don't think (The Patient) knew what palliative care was and I had sort of got an idea but. And then of course she (The Palliative care nurse) said she brings up oh you have got to go through all these things (The medication) B about where you would like to die and you know….”
E05 “… they didn't actually use the term dying, they didn't say we think he has got a week or days or hours did they? They just sort of said the term end of life….they didn’t say a week or….”
Health care professionals used the expression “just in case” to describe the medication to patients and relatives, but did not clarify these were just in case of what
E09 “….I remember him (the patient) saying what are these for because he was diabetic as well and had all sorts of medication and what is this for. And he (The Doctor) actually did say it’s just in case you need it, if you have got it here then you have not got to wait for a prescription to be filled or anything…..He (patient) was getting well…right up until then everything was fine.. (Just in case of what ??)
E18 “I wouldn't say it was discussed I was told and I was asked if that was OK for the medications to be there. And they I think the phrase just in case was used actually or something very similar.”
Others referred to end of life drugs/medication
E05 “…they didn't actually use the term dying, they didn't say we think he has got a week or days or hours did they? They just sort of said the term end of life…”
How JiC meds were talked about – eg ‘end of life meds’ – causes misunderstandings about what such meds are for. There was a belief that they may end life – kill the patient
E18 “…I know there was more than one drug there and but there must have been I am assuming there is an end of life injection.”
E21 “….You (FCG) don't touch these because they are like they are ….. they are a deadly cocktail aren't they…well they could be”
Lack of information and confusing information
Some participants were just given a prescription to take to the pharmacy with little or no discussion with the relatives or patient about the medication
E15….”And she said (Doctor) I have got a prescription for you down ... in the surgery in reception, if you come and pick that up its for your end of life tablets”.
Some relatives were given the JIC drugs with very limited information
Did anybody explain to you what the drugs were-?
E25 line 25 “Not really not really. Vaguely that they were just stronger pain relief”.
E21 line 19 “…. But she (the Macmillan nurse) said don't worry about them we will sort them out when the time comes. You don't touch these because they are like they are ….. they are a deadly cocktail aren't they”.
Lack of any plan for JiC medication being recorded and written down for reference
Not One FCG reported seeing a fact sheet with the drugs documented and explaining what they were for. There was documentation for use by the HCP, but not for patient and family to see – their involvement was not at all apparent. This had at times caused distressE21 VI…. have all these things explained to you fully (JIC MEDS). Given a fact sheet even, this is what is in your box, these are the things to look out for when the time comes. Or you know what to look out for … ….. something like read when you think the time is right or don't open until you know.
Others wished for more information from HCP – more explanation
Informal channels of communication were also used for accessing advice – asking ‘people you know’ rather than any formal channels of advice being given.
HCP are aware of the challenges and went above and beyond to try and make the system work
E06 “whether she (The doctor) was supposed to or not, she even gave me her personal mobile number so I could phone her because she didn't want me calling 111 when R passed. Because she said you could wait 8 hours 9 hours, you could wait, she said you might not but she said if he passes when the surgery isn't open ring me and I will come and sort it all out for you. And she did”.
The paramedic knew someone at the local hospital to talk to- this prevented the patient being admitted to hospital then they sent the paramedic outE08 “….we didn’t want the paramedic… she had a care plan (to allow her to die at home)”
E25 “And I think I had to ring twice and when (Nurse) A got to me she said that she apologised for the delay but the call had been put through to a different team. And she just happened to spot S name in the call queue”
Challenges associated with obtaining, storing and disposing of unused medicationPracticalities of getting medication
Accessibility/obtaining medication/medication not immediately available – especially problematic when P in crisis (eg. pain) and FCG is main carer and has to vacate caring responsibilities to chase medication
Some participants reported no problems around obtaining medications, while for others obtaining the medication was problematic with patients being left alone while family members chased around to get the medication.
E11 “So I had to go to three different ones (Pharmacy’s) While…. and he was at home all the time really poorly. …….And he was almost frightened of being on his own because he said I don't want to die when you are not here”.
E19 67 “…Well this was the Wednesday before he died on the Thursday so we had to spend all that day ringing around the chemists to try and get it and in the end we had to get it from two chemists….. It caused a lot of stress that day didn't it and a lot of trauma.One participant reported feeling devastated because he was trying to get JIC medication: His wife died during this time.
E15 198-202 “She (The district nurse) said as soon as the doctor is open at 8 o’clock go down and get a prescription, you want some more morphine we have used it all you have not got any. So of course 8 o’clock me being a fool thought (The patient) S was alright with the morphine she had quietened down and what not. Thought I would nip down the doctors, it’s only down the road……. So anyway I come back about twenty past eight my son was here then my oldest son I come in and went upstairs and she had gone( Died)”
Being ‘questioned’ – being entrusted
None of the participants reported being questioned by doctors (Or nurse prescriber) over the amount of medication, however the pharmacist when dispensing the medication were questioning and some felt accused over the storage or amount of medication.
E011 “…And one (A pharmacist) wouldn't let me have the medication because I didn't bring, I didn't have proof of a locked cabinet. ….Yes so that would be hard for someone else”
E01 19.”Yes (Being questioned) you know because I was worried about running out because it was sort of hyper critical of the situation because she was in screaming pain sometimes and it was so distressing”.Mixed messages regarding storing medication – how? how secure?
There was complete discrepancy - some FCG’s, were given no information so stored them with the rest of the medications, in pharmacy bags and boxes in numerous places around the house.
E19 …….. (The JIC meds ) “we kept in an old cracker box.”
E21………”and I put them (The JIC meds) in a Tupperware box under her bed”.
E18 ….”put them on top shelf (The JIC meds)”.
Others had no information but had reservations about the storage of the medications.
E25…….” They (The just in case meds) literally sat in the lounge with him……. I think that's quite loose shall we say for controlled drugs to just be sitting around in somebody’s home. There was quite a variety of scenarios that could happen with them.”
Others found there presence of the JIC medications comforting
E18 “…. put them on the top shelf (The JIC meds ). I found it quite comforting that they were there.
Others were given information on storage and were told that they had to be in a locked box.
E11 “…… they said (Pharmacist) oh you need a locked cabinet for the medication...”
However some FCG’s reported that they would like secure arrangements for the medications. For fears of them going missing and then consequently being blamed.
E05 “…how do you know if these people (Paid Carers) because it wasn't in a locked container, I didn't know how trustworthy they were or whether it was open for abuse”.
Information was given by HCP that the drugs were controlled, this at times added to the FCG burden
E13 “... And you were told (By Heath Care Professional) that the police were involved if anything did go wrong …
E01 ………“None went missing – worried about people with drug relations (Family with drug dependency)
E18 251 “as for me and the wife two elderly people only in the house then I didn't feel too bad about it. Obviously kept my fingers crossed that none went missing”.FCG fears, anxieties and misgivings
The worry that their home is a potential target to be broken into.
E19, 298 “Because you know people around know what is going on don't they and they know that somebody, if they have got that knowledge that someone is in that state they could quite easily break in to your property and get the drugs. Because people do nowadays they are desperate aren't they. So it is a huge responsibility I think having those tablets and injections and things in your house”.
Some relatives were worried that carers could take the medication, and they would be responsible.E05 ….”Not from the point of view of us or whatever, I am a bit concerned that the carers knew it was there and you have got to trust these people but I am not always a trusting person. And I did say to you (Partner), its open for abuse”.
Others had concerns that they may be forced in to giving the medications or alternatively the patients themselves may want to self-administer.E25…..”The scenarios I am thinking of is .. if I thought he is in pain and they are not coming I will try and give him something. Or if he was well enough he (The patient) is thinking I have had enough I am going to try and get some of this in me…. If there are people that are substance misusers and spot them. E01 29-30. I can remember them being dropped (The JIC medication) after a day or two after she came out and I was told they were nothing to do with me, sort of thing.
E25 “Not really (Not told about the drugs), I think I may have said what’s this, what does this do …
Fear of the medication
Some of the information FCGs were given was very direct and hard hitting (Frightening information.)
Relatives recall having their integrity questioned
E13 line 17 “Well if you find something missing the police will be involved”
This provoked worries about storage
E13 line 162 “Because they didn't come in a secure cabinet or anything like that they were just in bags and put into a different room. So if you have got kids or anything then they would be a danger as far as I can see“.
Confusion of what to do with medication after death
Added to the burden of grief and the feelings of being untrustworthy
E06 “ …That made me cross actually, because it was controlled drugs we had to go physically take them to the pharmacy, a local surgery one. And they had to count and make sure that everything was there that should have been there…”
Others reported no checking of the medication that they returned to the chemist
E25 “They didn’t get re-logged at the chemist…. So again you know I could have sold them for a few quid maybe (laughs) had a bit of a high and a good sleep.”
Unsure what to do - again lack of information.
E05 “…So I took it to the chemist lock stock and barrel took it just to the chemist ,…They said (The nurses) yes that's why we are here, we have come to fetch medication. I said well you are a little bit too late because I have taken it all to the chemist because I didn't want to leave it in the house”.
Experiences at the point of needing symptom managementExcellent care
There were reports of excellent care with well trained staff, with OOH service providing timely care
Doctor came within 15min
E18 130………”nurse said I think you ought to ring and he came (Doctor) within quarter of an hour.”
E09… “and I rang the nurse (to give the medication) and she came within an hour”.
Many FCG’s talk about feeling, safe, secure, reassured (or not!)
E25 227 “I used to look forward to them coming because it was kind of, they will be here soon and they can check he is okay”
Helpful staff, system failures
Others found the staff provided excellent care but the patients and staff were let down by the system
E25… “So I rang for them and (Nurse) came out really really lovely lovely girl, lovely attitude. They all did to be fair….. I think I had to ring twice and when A (Nurse) got to me she said that she apologised for the delay but the call had been put through to a different team. And she just happened to spot S (patients) name in the call queue.E09 …” And I rang again (SPA) and the nurse said I will be there probably about an hour but she had got another call locally to us to a nursing home (And had to see two extra patients). And she didn't actually get to us until about half past two in the morning during which all of that time D had been shouting (4 hours).
Problems getting support/staff
All FCG’s reported to be given phone numbers to contact, although they were not given detail on how the system worked.
EO1 “…sometimes it would take 3 hours to get a nurse, especially in the middle of the night”.
E26 “…It’s just you can't, you cannot do that (wait for staff ), having extreme pain and having to wait an unknown time and it can be four hours and it was say two hours probably when they got to us on one occasion. But never straight away and of course 15 minutes is 15 minutes too long (When relative is in pain.)”
FCG reported to calling the single point of access numerous times
E21 …”Oh Six, half a dozen (Calls to SPA)….then they sent the paramedic out….we didn’t want the paramedic… she had a care plan (to allow her to die at home)”E09…”I mean when people said (HCP) give us a call, ring somebody, ring this number, and I don't expect it to be instant but I didn't expect it to be hours. … I don't imagine there are a lot of people sitting around a table waiting for me to call but I don't expect they have to come from Derby either though”.
Lack of Training
Others reported staff attending but were unable to/not trained to give the medications.
E01 “ I phoned for a nurse and the nurse came along and she said straight out to me she says I don't know how to deal with these.(The JIC meds)”.
E25 “Because they (The hospice at Home nurses ) could do something more than I could for S (patient)that was the difference I think they could administer, they are trained to a higher level than a HSA without being rude or detrimental”.Lack of/over confidence (of staff) – adding to carer burden
Some HCP’s and Social-care staff also lack confidence with administering JIC meds and EOL care– some experiences recounted instances of tears/crying from professionals faced with difficult decisions or patients dying.
The staff felt/ were unable to give the medication and when trying to seek help this added to the FCG burden
E01 217 “Me, yes and my daughter in law and my son was there with me and the matron on the phone was crying almost because they were telling her at the other end of the line to get a grip of herself as good as, that was the gist of it. It was terrible…”
E19 347 ..”And he (The Carer) actually stood in the bedroom one day crying at the state my dad was in.”
This added to the relative’s burden at a difficult time
362 “I didn't quite know how to deal with him really because you are trying your best not to be a mess yourself and for somebody to be crying that you didn't quite know how to cope with it, it was quite hard for me”
E15-119 “And she (Ambulance Crew) was doing things to her checking her blood pressure and everything. All of a sudden she started crying….. I (The Relative) come down (Stairs) and see the young lass (Ambulance Crew) and said do you want a cup of tea or anything are you alright. She said yes …...
Other staff members being over familiar and offering false hope. This stopped relatives calling for help.
E09 “…. one of the district nurses actually knew more about us than we did, it’s because she used to do tug of war with my brother in law who is my husband’s twin. When she came in she said oh hello and I had never seen her before so I didn't know who she was….It was a bit weird actually! It was a bit strange. And she was like no, no you are going to be fine, don't worry we are not going to let anything happen to you. But it sort of did anyway, ultimately anyway…we thought we might get her (So did not call) “(Lack of) Authorisation
Even when the correct medication was at the correct address with the correct staff able to administer it, there was lost or incomplete paper work
E18 I…..”B was not well and I called the emergency people out and she said oh you have got your medicines here I think I will give B some and I hadn't got the paperwork, I had got the paperwork and she said it’s not been signed off. …… So I said does that mean you can't give it and she said no I can't”.
Elderly relatives who had no medical training referred to authorisation, because they had had such a traumatic time witnessing staff trying to get the paperwork to give the JIC drugs while their relative was in distress..
E01 “…….Yeah authorisation was the key word yes”.
E11”…the nurse what came the day before took quite a few M (Patients ) charts and she must have put the authorisation letter in amongst the Mar charts she took it by mistake I think. But the nurse wouldn't give it. (The JIC Meds)”Systemic failings/barriers
Staff not attending in a timely manner.
Administrative errors, FCG were given numbers to contact staff – failings in the management of referrals lead to increased patient and carer distress
E25 “And I think I had to ring twice and when (Nurse) A got to me she said that she apologised for the delay but the call had been put through to a different team. And she just happened to spot S name in the call queue”
E11 “I think it was half eight in the morning (When I called) but one day they didn't turn up until quarter to twelve. I did actually ring them and I said he was so sick I did say if you don't come quick he is going to die before you get here. Because it made a difference him having the medication”
E13 106 “I had a card from **for different people we could phone and theses peopleExtended time waiting for someone to call back/attend when P/loved one is in great pain and/or anxious state
Administrative errors
FCG were given numbers to contact staff – failings in the management of referrals led to increased patient and carer distress
E25 “And I think I had to ring twice and when (Nurse) A got to me she said that she apologised for the delay but the call had been put through to a different team. And she just happened to spot S name in the call queue”
E11 “I think it was half eight in the morning (When I called) but one day they didn't turn up until quarter to twelve. I did actually ring them and I said he was so sick I did say if you don't come quick he is going to die before you get here. Because it made a difference him having the medication”
E13 106 “I had a card from **for different people we could phone, (if we needed help) and these people would be on the phone all the time. I didn’t find that was the case”.Staff attending but not being able to give JIC.
Letters of authorisation not in place or have got lost
Even when the correct medication was at the correct address with staff able to administer it, lost or incomplete paper work
E18 I….. “B was not well and I called the emergency people out and she said oh you have got your medicines here I think I will give B some and I hadn't got the paperwork, I had got the paperwork and she said it’s not been signed off …… So I said does that mean you can't give it and she said no I can't”.
Elderly relatives who had no medical training referred to ‘authorisation’, because they had had such a traumatic time witnessing staff trying to get the paperwork to give the JIC drugs while there relative was in distress..
E01 “…….Yeah authorisation was the key word yes”.
E11”…the nurse what came the day before took quite a few M (Patients ) charts and she must have put the authorisation letter in amongst the Mar charts she took it by mistake I think. But the nurse wouldn't give it. (The JIC Meds)Care-giver perspectives of and confidence to engage with administering JiC medication
Willingness to engage with administering medication
Some FCGs suggest they would engage with administering meds if had skills/guidance and support especially if a loved one was in pain or distress.E06 370 ” Mmm, probably if it had come to it I would probably have done it (Give medication). Yes there is no two ways I would have had to just suck it up and do it.”
Delays in getting trained staff appeared to increases their willingness to administer JIC. In addition they reported giving injectable before.
Would you have given medication?
E 21 “Yes”.
You say that with no hesitation.
“ because I have to inject my father sometimes……... I have no problem injecting her because I didn't want to see her in that state (Distress)”E09 “Yes it was. It was probably the worst bit right the way through everything. (Seeing him in distress)” …Hmm yes (to giving JIC), yes because, it sounds stupid because he has been on insulin injections …three times a day for many years
E26….I have no problem injecting insulin and organising tablets and O morph and all that. So looking back you see I was told it has to be a nurse and I was never given the option of would you be able to do it. Considering the number of things they have trained me up to do I was, that was something I could have done without a doubt”.
Concerns about legal and moral repercussions
E19 “No. (I would not give JIC meds) ……You can't do it, I would have loved to have given him it but no you can't do it”.E0 ”If I had been shown and trained when mum was desperate (In pain and distress), as long as it was legal would have done it” (Given JIC meds)
Some FCGs potentially fearful of such intervention. Some were strongly against themselves or others giving JIC meds.
E13 “I would go against it. One, I would go against training somebody to do that at home and two, I would be against it….. putting a deadly substance …..totally against it”
They are not sure whether they could manage it practically –
E01 “I think it would be beyond some people’s comprehension”Emotional involvement figures highly in whether they would be prepared to administer meds themselves.
E08 ”…It would be quite difficult (to know when to give the medication) “If she dies tomorrow – Christ I would never forgive myself”A number of the participants were or had a family member who had a caring or medical background this may make a difference to the willingness to give JIC, although guidance was asked for.
E25 “With the correct advice, I would because my background is veterinary nursing so I am quite used to drugs. And having spent so long with the NHS various things so yes I would have been happy to have given them under guidance”.
E05…”I mean through a prescription form that I could have signed or made it legal that would have been fine for me as a nurse. But not just willy nilly. I mean how did they know you are not popping them off (killing people), it happens don't it”.
Reflective thoughts• How might it be possible to build confidence among FCG’s – if indeed it is deemed appropriate to ask them to engage in JiC meds administering
• How to empower ALL parties who might be involved in JiC administering to do so confidently
• Formalised and consistent method of communicating and recording the plan for the use of JiC meds – regular review of plans as situations evolve. Consistent filing of letters of authorisation etc
• Clear and consistent messages about what JiC meds are and what they are not
• Clear designation of roles and responsibilities of those to be involved
• Ongoing assessment of training needs of those who are to be involved
• Review and potential remedy of systemic points of weakness
• How to empower those who are emotionally involved (ie regard the situation subjectively) to be able to make objective decisions and to take objective actions.
• Given that some staff are not yet confident, how can confidence be instilled into FCGs to administer JiC medication?Conclusion
Most FCGs found having anticipatory medicines generally beneficial even though to some this brought home the reality of the fact that their loved one was dying. Some appeared to have a crucial misunderstanding about the purpose of the medication and thought it was medication to end life. There were also a number of accounts related to the high level of risk implied by health professionals of having the medication in the home including reference to the police, lethal cocktails and pharmacists requiring there to be locked storage containers.Whilst there were examples of good practice many participants described distressing experiences in obtaining medication. where there has been poor communication and when professional support has been difficult to access at the point at which it has been needed. A good experience relies heavily on the confidence and competence of staff and accessibility of services.
A number of suggestions were given for improvement including a desire for more briefing to family members about what to expect and what to do as a loved one deteriorates and is dying. Some family care givers, would consider administration under advice/supervision
JiC medications do not solve all the issues related to getting medication and delivering symptom management. Training, communication and systems all require improvement to ensure good outcomes alongside this.
Recommendations for practice in JiC medications
1. Mindful, purposive communication:
• This may be the first time someone realises their loved one is dying
• They may perceive that they are dying now/more ill than people have said
• They may think these are drugs to end life2. Guide people about looking after a sick/dying person
3. Be clear for people about what to do with unused drugs after death
4. Develop a carer administration protocol/SOP for the few people that would feel they would like to do this.
Impact of COVID-19
We have approval from the sponsor that participant interviews can now be undertaken by phone and a substantial amendment application has been made to the ethics committee.
However we have found that potential participants have been less forthcoming at this time.
Of most significance to the study is that the research assistant has now been deployed clinically as has the Principle Investigator Professor Faull. It is therefore uncertain at this point in time whether further interviews will be undertaken. We already have a very rich data set and if no further interviews are completed then our assessment is that this will not unduly scientifically compromise the pilot study findings.It is however certain that there will be a delay in analysis of the data and in generating study outputs.
References
1. Higginson IJ, Sen-Gupta GJA. (2000) Place of care in advanced cancer: a qualitative systematic review of patient preferences. J Palliat Med 3:287-300.
2. Faull C, Windridge K, Ockleford E, et al. (2013) Anticipatory prescribing in terminal care at home: what challenges do community health professionals encounter? BMJ Support Palliat Care 3:91-7.
3. Payne, S. et al. (2015) Managing end of life medicines at home—accounts of bereaved family carers: a qualitative interview study. BMJ Support Palliat Care, 5:181-188.
4. Bowers B, Ryan R, Kuhn I, Barclay S. (2018) Anticipatory prescribing of injectable medications for adults at the end of life in the community: A systematic literature review and narrative synthesis. Palliat Med 2019;33:160–77.
5. National Institute for Health and Care Excellence.(2015) Care of dying adults in the last days of life (NG31). London: NICE.
6. Department of Health. (2008) End of life care strategy: promoting high quality care for all adults at the end of life. London: Department of Health.
7. Pollock K, Wilson E, Caswell G, Latif A, Caswell A, Avery A, Anderson C, Crosby V, Faull C. Managing Medicines for Patients with Serious Illness being Cared for at Home. A qualitative study. HS&DR 15/70/101 March 2021
8. Charmaz K. (2006). Constructing Grounded Theory, A Practical Guide Through Qualitative Analysis. London: Sage Publications.REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
19/EM/0049
Date of REC Opinion
7 May 2019
REC opinion
Further Information Favourable Opinion