Original Article
Caregivers Experiences of Managing Medications for Palliative Care Patients at the End of Life: A Qualitative Study
American Journal of Hospice & Palliative Medicine® 2014, Vol. 31(2) 148-154 ª The Author(s) 2013 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909113482514 ajhpm.sagepub.com
Barbara Sheehy-Skeffington, MB, BCh, MRCPI1, Sarah McLean, MB, BCh, MRCPI1, Michael Bramwell, BA, BSW, MPH, MCFC2, Norma O’Leary, MB, BCh, MRCPI1, and Aisling O’Gorman, MB, BCh, MRCPI1
Abstract Informal caregivers are important in enabling palliative care patients to die at home, including their role in managing medications. Often these patients are taking multiple medications, imposing an unnecessary burden on those who are already struggling with oral intake. A literature review revealed that, while there are a number of qualitative studies published examining the experience of caregivers looking after patients at the end of life, there is a dearth of published studies specifically examining the impact of managing medications on caregivers. This study explores the experience of caregivers managing medications for patients dying at home, focusing on the impact of polypharmacy, the use of syringe drivers and the use of ‘‘as needed’’ medications for symptom control. Three focus groups were performed, involving bereaved caregivers of patients that had died at home, and were analysed using content thematic analysis. Themes that emerged include: the significant burden of polypharmacy; the positive impact of subcutaneous infusions; the value of being able to give medications as needed for symptom control; the importance of clear guidance to assist with medication management. Strategies are suggested that might ease the burden of medications at the end of life. Keywords palliative care, home care, medication therapy management, polypharmacy, caregivers, syringe driver
Introduction The majority of palliative care patients wish to be cared for at home, and most of them wish to die at home.1 Informal carers, usually family members, play a vital role in allowing patients to remain at home, which includes significant input to symptom management.2 There are a number of published studies, both quantitative and qualitative, exploring issues around caring for palliative care patients at home. Funk and colleagues performed a comprehensive review of published qualitative research on home-based family caregiving at the end of life.3 The key findings of this review centered on the psychological and emotional experience—and sometimes burden—of caring for patients at home at the end of life and the provision of support for caregivers. With regard to medication management in this setting, relevant studies mostly focus on the provision of ‘‘as-needed’’ medications for symptom control.4-6 In the US setting, Kazanowski performed semistructured interviews with 17 caregivers of patients with terminal cancer at home, who were receiving home hospice care.7 This study found that caregivers assumed the responsibility of managing medications, because they were committed to keeping the patient at home. Most did not feel qualified to manage medications and relied on health care professionals to direct management. They experienced uncertainty about
administering as-needed medications and appreciated verbal and written instructions from health care professionals. Caregivers were afraid of making a mistake, namely giving too much medicine or giving medications at the wrong time. Thus, administering an often complex routine of medications for patients at the end of life can be a difficult and stressful experience for caregivers, a consideration that mandates making home administration of drugs as simple as possible. Although it is recognized that prescribing in palliative care should aim to minimize polypharmacy and maximize symptom control, patients are often taking a number of medications prescribed to manage comorbidities, which do not contribute directly to the control of symptoms.8 Some medications for comorbidities may have a role in symptom control, such as those used in heart failure. However, other medications, such as those used for primary or secondary prevention of cardiovascular disease, can impose
1 2
Our Lady’s Hospice and Care Services, Harold’s Cross, Dublin 6W, Ireland Melbourne Citymission, Palliative Care, Melbourne, Australia
Corresponding Author: Barbara Sheehy-Skeffington, Our Lady of Lourdes Hospital, Specialist Palliative Care Services, Drogheda, CoLouth, Ireland. Email: [email protected]
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Table 1. Characteristics of focus group participants. Patient age range Diagnoses
Relationship to patient
Focus Group 1 2 husbands, 1 son, 1 daughter-in-law, 47-90 1 sister, 1 daughter Focus Group 2 3 daughters, 1 husband, 2 friends 51-88 Focus Group 3 1 daughter, 1 daughter-in-law, 1 wife, 1 husband
52-85
1 lung cancer, 1 pancreatic cancer, 2 breast cancer, 1 prostate cancer 1 melanoma, 1 heart failure, 1 prostate cancer, 1 pancreatic cancer, 1 ovarian cancer 2 lung cancer, 1 colorectal cancer
Range of length of time known to service 5½ weeks-5 months 1-6 months 2½ weeks-8 months
an unnecessary burden on patients, who are already struggling with oral intake, and their caregivers. Although there are a number of published studies illustrating the prevalence of polypharmacy in patients at the end of life,8-10 as well as highlighting the physical effects and risks of this practice,11,12 there is a dearth of qualitative literature on the psychological impact of palliative care patients having to take multiple medications. This study seeks to capture the experience of managing medications for palliative care patients at home. In addition to focusing on the impact of polypharmacy and the use of asneeded medications for symptom control, we also wanted to explore caregivers’ views on the use of syringe drivers at home.
Methods
Figure 1. Focus group guide.
Setting
gathering of the views of a number of people in an economical and resource-effective way; participants may feel safer in the group environment and more comfortable expressing their views when others with similar experiences are present; ‘‘snowballing’’ can occur, where responses trigger further responses from other participants.13 Participants were sought using purposive sampling. The database of the service was searched to identify patients who had died at home, while under the care of the community palliative care team (CPCT), during a 2-month period, 6 to 7 months prior to the study taking place. This time period was chosen to allow sufficient time for acute grief but to be recent enough for reliable recall of events. The records of these patients were examined by a senior member of the CPCT who was able to identify their primary caregiver and to exclude those felt to be at significant bereavement risk. Those who had died within 48 hours of referral to the service were also excluded. Letters were posted to eligible caregivers explaining the study and requesting their participation in a focus group discussion. Of a total of 34 people contacted, 13 agreed to participate and 3 of these requested the participation of another family member who had been involved in the care of the patient at home. Thus, in total, 16 people participated in 3 focus groups that took place in 2011. Table 1 illustrates the characteristics of the participants in terms of their relationship to the patient and the nature of the patients’ illnesses. The focus groups were performed at the center of the palliative care service at a time convenient for participants. During each discussion, a series of open-ended questions were posed to the group as illustrated in Figure 1. As participants discussed issues, further questions
The research was performed within the Specialist Palliative Care Service in the North East region of the Republic of Ireland. This service comprises a multidisciplinary community and hospital-based specialist palliative care service, which provides cover for business hours (9 AM to 5 PM) 7 days per week. Outside of these hours, patients and families can contact the on-call general practitioner (GP) service who may seek advice from a consultant palliative medicine physician. There is no specialist palliative care inpatient unit in the region. In 2011, approximately 45% of the patients under the service died at home, while 32% died in the acute hospital and 23% in a nonacute setting, such as an aged-care facility.
Objectives The objectives of this study are to explore: the impact of polypharmacy at the end of life, as perceived by caregivers; the use of syringe drivers at home for palliative care patients; the use of as-needed medications by informal caregivers; other issues, perceived by caregivers, with managing medications for palliative care patients at home.
Data Collection This is a qualitative study using focus group methodology. The advantages of this methodology are that it allows
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Figure 2. Themes that emerged in each area of interest.
were asked, as appropriate, in order to clarify their statements. The discussions were moderated by the principal investigator (BSS). Another member of the palliative care service was available outside of the interview room to provide support for the participants if needed, and information was given to participants about bereavement support. Each focus group discussion lasted approximately 70 minutes and was digitally recorded. The audio recordings were transcribed, and the participants’ identities were anonymized in the transcripts.
discussed here under the headings pertaining to the areas of interest as outlined previously. NVivo (version 9), a computer software program designed for the coding, searching, and categorization of qualitative data, was used to aid in the analysis. The study protocol was approved by the institutional ethics committee, and informed consent was obtained from all the participants.
Findings Data Analysis The transcripts were analyzed using thematic content analysis, adapted from the method described by Philip Burnard and based on Glaser and Strauss’ grounded theory approach.14,15 The aim of this is to produce a detailed and systematic description of the issues addressed in the discussions and to elucidate themes under a reasonably exhaustive category system. Initially, open coding was performed to describe all aspects of the content of the transcripts. The emerging concepts were then grouped into categories and subcategories. The most prominent and relevant themes that emerged from the analysis will be
The themes that emerged in each area of interest are summarized in Figure 2. The most important and relevant findings are discussed in more detail below.
Impact of Polypharmacy at the End of Life/Issues With Administration of Medications Administration of medications was a stressful experience for most participants, particularly when their loved one was taking multiple medications. The size, formulation, and taste of medications, all came up as issues.
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We used to call them elephant tablets, they were so big. I can’t understand myself, in this day and age, how they can’t make something acceptable to taste, you know.
Participants suggested that liquid medications or even per rectum formulations would make administration easier. Timing of medications was also a challenge for caregivers.
A minority of participants (5 of 16) did feel that they were given good guidance on the medications and how they should be administered. The local pharmacist and the palliative care nurses were highlighted in particular as invaluable sources of information and guidance.
The Use of Syringe Drivers But the only thing I found a bit of a nuisance was—you know the way you have to give tablets before—half an hour before a meal. So that was getting a bit confusing because you know, you’d be up in the morning say—I was trying to rush two tablets into my father before I was getting the breakfast ready and stuff and then I’d say—you have to wait now for twenty minutes and then I’ll give you the breakfast.
In general, patients were commenced on syringe drivers because they could no longer manage oral medications. Many participants felt that this was a significant milestone in the patient’s illness, namely that it signaled a short prognosis. However, in some cases the families had experience of a syringe driver at an earlier point in the disease trajectory and therefore did not associate it with impending death.
The most difficult challenge, however, was the number of medications, even to the extent that this appeared to have a significant psychological impact on patients and their caregivers.
We knew it was a big stepping stone, d’you know what I mean, and this is it; once this happens there’s no going back.
Even if they were all small . . . you’ve a handful of tablets . . . do you know what I mean? Like, there could be up on 11 tablets in there for all different things, you know.
And I suppose when it happened before and she got on alright, there was the same kind of air about it when it was put on again.
The amount of tablets was unreal . . . He used to dread me coming down on the wooden floor and he’d say—what are you coming with now? I think you nearly at times felt you were force-feeding tablets into him and really, when it was such short time span . . . you know you look back and you think—that was crazy.
It is a milestone, I think, that you reach, I think, when you go on a syringe driver, I guess. Well for us it was.
Most people did not feel that the syringe driver accelerated the dying process, though one participant did: Yeah, I think it kills you, slowly . . . well I just do. I think . . . I’ve seen a couple of uncles dying of cancer as well and em . . . it just, you know, I think that eh . . . once the pump goes on it kind of weakens your heart or something.
Most caregivers (11 of 16) felt they would have liked more information on what each medication was for, in order to help them prioritize the most important medications. Those who cared for patients on medications for comorbidities would have liked these medications to have been rationalized earlier. There appeared to be some variation in the amount of guidance and information that families were given regarding the medications prescribed. All agreed that clear written information on what each medication was for and when it should be taken would be useful.
In terms of the actual effects of the syringe driver in their experience, most participants described a positive effect in terms of relief of symptoms and an easing of the burden of oral medications. In fact, many caregivers wished the syringe driver had been started earlier.
But, thinking back now . . . things are clearer now, I suppose . . . and, while she was on medication for blood pressure and a lot of other bits and pieces, you wonder why maybe they could not have been eliminated when we knew that she wasn’t going to get better and I’d love to know now could we have stopped or weaned her off those medications earlier and just stick with the ones that may have helped her pain. And that I’d love to know and I don’t know it and I don’t know who to ask.
I definitely think the pump could have been put on a lot sooner, you know, and even if it only had the morphine in it and nothing else. First off that would be less tablets, but you knew he was getting his constant painkiller. Because that was the one thing he was afraid of, was pain.
If somebody had have picked out—ok, instead of giving him—I can’t remember how many tablets he was on—but if you had have picked out two or three and said: ok, these are essential, you know, and get these into him, and let the rest go.
It was a joyous day when the pump went on mammy, and we were just so sorry that . . . when we seen how easy it was and we were just . . . everybody just calmed right down and it was very calming and we were just saying: why did we not have this a couple of weeks ago, when we’d seen . . . she really had gone through a lot.
We were just so grateful when the pump came, so grateful. And I was so grateful, because it stopped all the having to take the drugs and all that.
However, the syringe driver was also a source of stress for some, partly because of their perception of its importance in symptom control—they were fearful that the driver would stop
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152 or run out of medication before someone came to change it and that this could result in suffering for their loved one. We used to watch it going down - ‘cos we were sitting all the time with Dad and you’d sort of think—oh my gosh, I wonder how much left . . . we were so scared of it running out because it was the first time that we felt he had any reasonable pain control . . . You’re sitting there watching somebody and you’re thinking—this is getting smaller and smaller, they’re down to two bars, or it’s down to one bar or . . . .
Participants agreed that a ‘‘troubleshooting’’ guide would be helpful to reassure them of what to do in the event of a problem. Another practical issue was that the syringe driver could be cumbersome if the patient was mobile or, for some people, when there were 2 syringe drivers in place. On the other hand, a small number of participants did not have any worries about the syringe driver and felt that it was being taken care of by the palliative care team.
The Use of Medications As Needed for Symptom Control Most caregivers were happy to take on the role of administering as-needed medications. They found it empowering, and it alleviated their feelings of helplessness watching their loved one suffer. I used to feel good giving it to her because you felt, you know, that you were helping; you were physically able to do something instead of just watching them in pain and not being able to do anything, you know . . . .
It could also be a source of stress, however, particularly if there was a choice of more than one medication to give. Tiredness also affected caregivers’ ability to make decisions about as-needed medications. I would have had the choice now of two different ones. I had liquid morphine and another one, and I would have been better off with just one. Because I worried then, well which one should I give him? And it was . . . I didn’t know, even though I knew because it had been explained to me and I wasn’t doing wrong no matter which one I gave, but it was just . . . personally I was terrified . . . . You’re giving so many drugs, so often that you’d be totally confused. And you’re so tired and you’re all brain brillo-padded . . . .
Participants felt that clear written guidelines on how and when to give medications would have made it easier to make those decisions. One participant reported disagreement among different family members about giving as-needed medications. She felt that it was important for the information to be given to the whole family, not just the principal caregiver. Participants were open to the idea of giving as-needed medications subcutaneously, which is currently not the standard
practice in Ireland. Some said they would feel a little apprehensive about it, but they would be prepared to do anything to alleviate their loved one’s suffering. You see someone you love in pain, you’ll do anything . . . it’s not really any more pressure, I feel, than getting a family to give five tablets . . . and that would take much longer . . . .
Other Issues With Managing Medications Access to medications was difficult for some participants for a variety of reasons. Some medications were not covered by the Medical Card—a government scheme that pays for medications for those of lower income or eligible patients with certain conditions. Others were not covered by the drug repayment scheme that subsidies medications for those not eligible for medical cards, so that there is a ceiling amount above which they are not charged further. This could lead to a cost burden on patients and families trying to obtain important medications for symptom control. In order to access medications ‘‘on the Medical Card,’’ the patients must obtain a special script from their GP, even if the medication has already been prescribed by a hospital physician. The potential impact of this is highlighted by one participant: On one occasion then, the doctor couldn’t make out what was written down, so then there had to be phone calls made and all sorts of things until we got it . . . it would always be in the evening time and you’d be trying to get home before, early enough so that you could go to the doctor and all that.
In many instances, there appeared to be a lack of good communication between hospital specialists and GPs. This meant that when the goal of care changed to focusing on end-of-life care at home, the patient’s GP may not have seen them in many months and may not be fully up to date with medication regimens prescribed by hospital physicians. Some participants described issues with pharmacies not stocking the required medications, particularly opioids, sometimes requiring regular visits to 2 separate pharmacies in order to obtain all the medications needed or multiple trips back and forth to the pharmacy to collect medications as they became available. Many families were upset by having an excess of medications dispensed, which were unused and had to be disposed of after the patient died. I felt that was a disgrace actually ‘cos my doctor came into the house when my dad died, you know to sign the death cert and stuff, and he took a black bag of tablets out of my house and he said they’d all be going into the fire thing or whatever. I thought that was an awful waste of taxpayers’ money, to be quite honest, you know. Well, they actually brought six months’ supply in and I couldn’t understand that like, you know what I mean? I kinda knew myself she wasn’t going to be lasting that long because she was slipping away fast.
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Discussion The findings of these 3 focus groups involving bereaved caregivers illustrate some of the issues faced by patients and caregivers managing medications at home. One of the most striking themes to emerge was the impact of trying to administer multiple medications to sick loved ones who are struggling with oral intake. This is especially upsetting for carers, knowing that many of the medications for comorbidities are not benefiting the patient or contributing to symptom control. It has previously been suggested that continuing medications for comorbidities in patients with rapidly changing physical status— and therefore pharmacokinetics—may actually contribute to a hastening of their functional decline.9 This study highlights the additional factors of anxiety and burden, practical and psychological, for caregivers. It is important that practitioners in palliative care consider the burden of polypharmacy and give explicit guidelines to patients and families regarding rationalizing medications, though it should be acknowledged that this can be challenging as some medications for comorbidities can contribute to symptom control, especially when a nonmalignant disease, such as heart failure, is the primary life-limiting illness. Many of the participants of this study had not been given this guidance and had to decide themselves which medications to prioritize. Polypharmacy at the end of life has been well documented, including in patients under the service studied here. A retrospective review had been performed examining the medical records of patients who had died while under the care of the service in the home, hospital, and nursing home settings,10 revealing a high prevalence of polypharmacy at the end of life. Medications for comorbidities were discontinued more frequently in the acute hospital compared to the community setting. Although there is published literature suggesting guidelines to minimize polypharmacy,9,11,16 local guidelines, disseminated to GPs and palliative medicine physicians, may be the most effective way of ensuring that patients do not continue on unnecessary medications that lessen the quality of life. Overall participants had positive experiences with the use of syringe drivers. Continuous subcutaneous infusions were associated with improved symptom control and reduced the pressure on caregivers to be responsible for the management of pain and other symptoms. In fact, the main issue highlighted in the discussions was that it was not introduced early enough. Again, participants expressed that guidelines would be helpful to reassure them of what to do in the event of a problem with the syringe driver. This is especially important in a service that does not have 24-hour telephone support. Although overall there appears to be an understanding of the role of continuous subcutaneous infusions to maintain control of symptoms as patients approach the end of life, misperceptions still do exist regarding the association of the use of syringe drivers and the hastening of death. This highlights the importance of clear communication with caregivers, both in advance of this phase and at the time of commencing the infusion, to ensure that the
indications for the syringe driver and the medications being administered are explained and understood. Advance discussions in the anticipation of future need for such infusions may reduce the risk of distress at the time of transition to a syringe driver. Caregivers viewed as-needed medications in a mostly positive way. They felt empowered by the ability to help ease their loved ones’ suffering. However, the process of decision making around the use of these medications could be a source of stress. It has been previously demonstrated in the literature that caregivers have difficulty making decisions about symptom management at home, and that this can lead to feelings of powerlessness and helplessness, thus increasing carer burden.7 Participants in this study felt that clear guidelines about how to give as-needed medications would ease their anxiety considerably. In all 3 aspects of medication management that this study sought to explore—polypharmacy/administration of medications, the use of syringe drivers, and the use of as needed medications—clear information and guidelines emerged as an important way that health care professionals can ease anxiety for caregivers of patients at the end of life. It was also clear from the discussions that this information needs to be in a written form, as caregivers are often exhausted and under a lot of strain, so that verbal instructions are unlikely to be remembered clearly, or relayed to other caregivers, when needed. Good communication is vitally important in order to adopt a shared-care model with patients and caregivers, allowing them to participate in an informed and meaningful way with health care professionals.
Limitations Data collection was unfortunately limited by time constraints, and saturation of data may not have been achieved. Furthermore, the total number of participants was small and represented a small number of deaths at home. It is possible that potentially eligible caregivers who declined to participate may represent those who had a less positive experience of caring for someone dying at home and therefore potentially relevant and interesting data describing their experiences have been missed. However, this does not take away from the relevance or validity of the data presented here, which highlight issues not previously documented in the literature. Many of the issues raised in this study may be particular to the Irish setting and indeed to this region of Ireland, which is unusual in not having a specialist palliative inpatient unit. Therefore, the findings may not be generalizable to other community palliative care services, such as those with 24-hour telephone support. However, this is an acknowledged feature of qualitative research and is not limited to this study. An alternative concept of ‘‘transferability’’ for qualitative research has been suggested, which focuses on general similarities of findings under similar environmental conditions, contexts, or circumstances.3
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Conclusion This study has presented the experience of caregivers managing medications for palliative care patients dying at home. The impact of polypharmacy on patients and carers has been highlighted, an issue which has not been widely explored in published qualitative literature, but which has a significant impact on those for whom we prioritize quality of life. Specialist palliative care services should consider formulating local guidelines to encourage early rationalization of medications for those with limited life expectancies. This study has also highlighted the importance of clear and written guidance to assist and empower caregivers who are managing medications. Participants in this study indicated acceptance of the potential administration of subcutaneous medications for symptom control, suggesting that further research should explore the potential feasibility and acceptability of this practice in community palliative services, where this is not already being done. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
References 1. Higginson IJ, Sen-Gupta GJ. Place of care in advanced cancer: a qualitative literature review of patient preferences. J Palliat Med. 2000;3(3):287-300. 2. Armes PJ, Addington-Hall JM. Perspectives on symptom control in patients receiving community palliative care. Palliat Med. 2003;17(7):608-615. 3. Funk L, Stajduhar KI, Toye C, Aoun S, Grande GE, Todd CJ. Home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998-2008). Palliat Med. 2010;24(6):594-607.
4. Lee L, Headland C. Administration of as required subcutaneous medications by lay carers: developing a procedure and leaflet. Int J Palliat Nurs. 2003;9(4):142-149. 5. Israel F, Reymond L, Slade G, Menadue S, Charles MA. Lay caregivers’ perspectives on injecting subcutaneous medications at home. Int J Palliat Nurs. 2008;14(8):390-395. 6. Anderson BA, Kralik D. Palliative care at home: carers and medication managment. Palliat Support Care. 2008;6(4):349-356. 7. Kazanowski M. Family caregivers’ medication management of symptoms in patients with cancer near death. J Hosp Palliat Nurs. 2005;7(3):174-181. 8. Holmes HM, Sachs GA, Shega JW, Hougham GW, Cox Hayley D, Dale W. Integrating palliative medicine into the care of persons with advanced dementia: identifying appropriate medication use. J Am Geriatr Soc. 2008;56(7):1306-1311. 9. Currow DC, Stevenson JP, Abernathy AP, Plummer J, ShelbyJames TM. Prescribing in palliative care as death approaches. J Am Geriatr Soc. 2007;55(4):590-595. 10. McLean S, Sheehy-Skeffington B, O’Leary N, O’Gorman A. Pharmacological management of comorbid conditions at the end of life - is less more? Ir J Med Sci. 2013;182(1):107-112. 11. Stevenson J, Abernathy AP, Miller C, Currow DC. Managing comorbidities in patients at the end of life. Br Med J. 2004; 329(7471):909-912. 12. O’Mahony D, O’Connor MN. Pharmacotherapy at the end-of-life. Age Ageing. 2011;40(4):419-422. 13. Hudson P. Focus group interviews: a guide for palliative care researchers and clinicians. Int J Palliat Nurs. 2003;9(5): 202-207. 14. Burnard P. A method of analysing interview transcripts in qualitative research. Nurs Educ Today. 1991;11(6):461-466. 15. Glaser BG, Strauss AL. The Discovery of Grounded Theory: Strategies for Qualitative Research. New York, NY: Aldine de Gruyter; 1967. 16. Holmes HM, Hayley DC, Alexander GC, Sachs GA. Reconsidering medication appropriateness for patients late in life. Arch Int Med. 2006;166(6):605-609.
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Caregivers Experiences of Managing Medications for Palliative Care Patients at the End of Life: A Qualitative Study
American Journal of Hospice & Palliative Medicine® 2014, Vol. 31(2) 148-154 ª The Author(s) 2013 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909113482514 ajhpm.sagepub.com
Barbara Sheehy-Skeffington, MB, BCh, MRCPI1, Sarah McLean, MB, BCh, MRCPI1, Michael Bramwell, BA, BSW, MPH, MCFC2, Norma O’Leary, MB, BCh, MRCPI1, and Aisling O’Gorman, MB, BCh, MRCPI1
Abstract Informal caregivers are important in enabling palliative care patients to die at home, including their role in managing medications. Often these patients are taking multiple medications, imposing an unnecessary burden on those who are already struggling with oral intake. A literature review revealed that, while there are a number of qualitative studies published examining the experience of caregivers looking after patients at the end of life, there is a dearth of published studies specifically examining the impact of managing medications on caregivers. This study explores the experience of caregivers managing medications for patients dying at home, focusing on the impact of polypharmacy, the use of syringe drivers and the use of ‘‘as needed’’ medications for symptom control. Three focus groups were performed, involving bereaved caregivers of patients that had died at home, and were analysed using content thematic analysis. Themes that emerged include: the significant burden of polypharmacy; the positive impact of subcutaneous infusions; the value of being able to give medications as needed for symptom control; the importance of clear guidance to assist with medication management. Strategies are suggested that might ease the burden of medications at the end of life. Keywords palliative care, home care, medication therapy management, polypharmacy, caregivers, syringe driver
Introduction The majority of palliative care patients wish to be cared for at home, and most of them wish to die at home.1 Informal carers, usually family members, play a vital role in allowing patients to remain at home, which includes significant input to symptom management.2 There are a number of published studies, both quantitative and qualitative, exploring issues around caring for palliative care patients at home. Funk and colleagues performed a comprehensive review of published qualitative research on home-based family caregiving at the end of life.3 The key findings of this review centered on the psychological and emotional experience—and sometimes burden—of caring for patients at home at the end of life and the provision of support for caregivers. With regard to medication management in this setting, relevant studies mostly focus on the provision of ‘‘as-needed’’ medications for symptom control.4-6 In the US setting, Kazanowski performed semistructured interviews with 17 caregivers of patients with terminal cancer at home, who were receiving home hospice care.7 This study found that caregivers assumed the responsibility of managing medications, because they were committed to keeping the patient at home. Most did not feel qualified to manage medications and relied on health care professionals to direct management. They experienced uncertainty about
administering as-needed medications and appreciated verbal and written instructions from health care professionals. Caregivers were afraid of making a mistake, namely giving too much medicine or giving medications at the wrong time. Thus, administering an often complex routine of medications for patients at the end of life can be a difficult and stressful experience for caregivers, a consideration that mandates making home administration of drugs as simple as possible. Although it is recognized that prescribing in palliative care should aim to minimize polypharmacy and maximize symptom control, patients are often taking a number of medications prescribed to manage comorbidities, which do not contribute directly to the control of symptoms.8 Some medications for comorbidities may have a role in symptom control, such as those used in heart failure. However, other medications, such as those used for primary or secondary prevention of cardiovascular disease, can impose
1 2
Our Lady’s Hospice and Care Services, Harold’s Cross, Dublin 6W, Ireland Melbourne Citymission, Palliative Care, Melbourne, Australia
Corresponding Author: Barbara Sheehy-Skeffington, Our Lady of Lourdes Hospital, Specialist Palliative Care Services, Drogheda, CoLouth, Ireland. Email: [email protected]
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Table 1. Characteristics of focus group participants. Patient age range Diagnoses
Relationship to patient
Focus Group 1 2 husbands, 1 son, 1 daughter-in-law, 47-90 1 sister, 1 daughter Focus Group 2 3 daughters, 1 husband, 2 friends 51-88 Focus Group 3 1 daughter, 1 daughter-in-law, 1 wife, 1 husband
52-85
1 lung cancer, 1 pancreatic cancer, 2 breast cancer, 1 prostate cancer 1 melanoma, 1 heart failure, 1 prostate cancer, 1 pancreatic cancer, 1 ovarian cancer 2 lung cancer, 1 colorectal cancer
Range of length of time known to service 5½ weeks-5 months 1-6 months 2½ weeks-8 months
an unnecessary burden on patients, who are already struggling with oral intake, and their caregivers. Although there are a number of published studies illustrating the prevalence of polypharmacy in patients at the end of life,8-10 as well as highlighting the physical effects and risks of this practice,11,12 there is a dearth of qualitative literature on the psychological impact of palliative care patients having to take multiple medications. This study seeks to capture the experience of managing medications for palliative care patients at home. In addition to focusing on the impact of polypharmacy and the use of asneeded medications for symptom control, we also wanted to explore caregivers’ views on the use of syringe drivers at home.
Methods
Figure 1. Focus group guide.
Setting
gathering of the views of a number of people in an economical and resource-effective way; participants may feel safer in the group environment and more comfortable expressing their views when others with similar experiences are present; ‘‘snowballing’’ can occur, where responses trigger further responses from other participants.13 Participants were sought using purposive sampling. The database of the service was searched to identify patients who had died at home, while under the care of the community palliative care team (CPCT), during a 2-month period, 6 to 7 months prior to the study taking place. This time period was chosen to allow sufficient time for acute grief but to be recent enough for reliable recall of events. The records of these patients were examined by a senior member of the CPCT who was able to identify their primary caregiver and to exclude those felt to be at significant bereavement risk. Those who had died within 48 hours of referral to the service were also excluded. Letters were posted to eligible caregivers explaining the study and requesting their participation in a focus group discussion. Of a total of 34 people contacted, 13 agreed to participate and 3 of these requested the participation of another family member who had been involved in the care of the patient at home. Thus, in total, 16 people participated in 3 focus groups that took place in 2011. Table 1 illustrates the characteristics of the participants in terms of their relationship to the patient and the nature of the patients’ illnesses. The focus groups were performed at the center of the palliative care service at a time convenient for participants. During each discussion, a series of open-ended questions were posed to the group as illustrated in Figure 1. As participants discussed issues, further questions
The research was performed within the Specialist Palliative Care Service in the North East region of the Republic of Ireland. This service comprises a multidisciplinary community and hospital-based specialist palliative care service, which provides cover for business hours (9 AM to 5 PM) 7 days per week. Outside of these hours, patients and families can contact the on-call general practitioner (GP) service who may seek advice from a consultant palliative medicine physician. There is no specialist palliative care inpatient unit in the region. In 2011, approximately 45% of the patients under the service died at home, while 32% died in the acute hospital and 23% in a nonacute setting, such as an aged-care facility.
Objectives The objectives of this study are to explore: the impact of polypharmacy at the end of life, as perceived by caregivers; the use of syringe drivers at home for palliative care patients; the use of as-needed medications by informal caregivers; other issues, perceived by caregivers, with managing medications for palliative care patients at home.
Data Collection This is a qualitative study using focus group methodology. The advantages of this methodology are that it allows
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Figure 2. Themes that emerged in each area of interest.
were asked, as appropriate, in order to clarify their statements. The discussions were moderated by the principal investigator (BSS). Another member of the palliative care service was available outside of the interview room to provide support for the participants if needed, and information was given to participants about bereavement support. Each focus group discussion lasted approximately 70 minutes and was digitally recorded. The audio recordings were transcribed, and the participants’ identities were anonymized in the transcripts.
discussed here under the headings pertaining to the areas of interest as outlined previously. NVivo (version 9), a computer software program designed for the coding, searching, and categorization of qualitative data, was used to aid in the analysis. The study protocol was approved by the institutional ethics committee, and informed consent was obtained from all the participants.
Findings Data Analysis The transcripts were analyzed using thematic content analysis, adapted from the method described by Philip Burnard and based on Glaser and Strauss’ grounded theory approach.14,15 The aim of this is to produce a detailed and systematic description of the issues addressed in the discussions and to elucidate themes under a reasonably exhaustive category system. Initially, open coding was performed to describe all aspects of the content of the transcripts. The emerging concepts were then grouped into categories and subcategories. The most prominent and relevant themes that emerged from the analysis will be
The themes that emerged in each area of interest are summarized in Figure 2. The most important and relevant findings are discussed in more detail below.
Impact of Polypharmacy at the End of Life/Issues With Administration of Medications Administration of medications was a stressful experience for most participants, particularly when their loved one was taking multiple medications. The size, formulation, and taste of medications, all came up as issues.
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We used to call them elephant tablets, they were so big. I can’t understand myself, in this day and age, how they can’t make something acceptable to taste, you know.
Participants suggested that liquid medications or even per rectum formulations would make administration easier. Timing of medications was also a challenge for caregivers.
A minority of participants (5 of 16) did feel that they were given good guidance on the medications and how they should be administered. The local pharmacist and the palliative care nurses were highlighted in particular as invaluable sources of information and guidance.
The Use of Syringe Drivers But the only thing I found a bit of a nuisance was—you know the way you have to give tablets before—half an hour before a meal. So that was getting a bit confusing because you know, you’d be up in the morning say—I was trying to rush two tablets into my father before I was getting the breakfast ready and stuff and then I’d say—you have to wait now for twenty minutes and then I’ll give you the breakfast.
In general, patients were commenced on syringe drivers because they could no longer manage oral medications. Many participants felt that this was a significant milestone in the patient’s illness, namely that it signaled a short prognosis. However, in some cases the families had experience of a syringe driver at an earlier point in the disease trajectory and therefore did not associate it with impending death.
The most difficult challenge, however, was the number of medications, even to the extent that this appeared to have a significant psychological impact on patients and their caregivers.
We knew it was a big stepping stone, d’you know what I mean, and this is it; once this happens there’s no going back.
Even if they were all small . . . you’ve a handful of tablets . . . do you know what I mean? Like, there could be up on 11 tablets in there for all different things, you know.
And I suppose when it happened before and she got on alright, there was the same kind of air about it when it was put on again.
The amount of tablets was unreal . . . He used to dread me coming down on the wooden floor and he’d say—what are you coming with now? I think you nearly at times felt you were force-feeding tablets into him and really, when it was such short time span . . . you know you look back and you think—that was crazy.
It is a milestone, I think, that you reach, I think, when you go on a syringe driver, I guess. Well for us it was.
Most people did not feel that the syringe driver accelerated the dying process, though one participant did: Yeah, I think it kills you, slowly . . . well I just do. I think . . . I’ve seen a couple of uncles dying of cancer as well and em . . . it just, you know, I think that eh . . . once the pump goes on it kind of weakens your heart or something.
Most caregivers (11 of 16) felt they would have liked more information on what each medication was for, in order to help them prioritize the most important medications. Those who cared for patients on medications for comorbidities would have liked these medications to have been rationalized earlier. There appeared to be some variation in the amount of guidance and information that families were given regarding the medications prescribed. All agreed that clear written information on what each medication was for and when it should be taken would be useful.
In terms of the actual effects of the syringe driver in their experience, most participants described a positive effect in terms of relief of symptoms and an easing of the burden of oral medications. In fact, many caregivers wished the syringe driver had been started earlier.
But, thinking back now . . . things are clearer now, I suppose . . . and, while she was on medication for blood pressure and a lot of other bits and pieces, you wonder why maybe they could not have been eliminated when we knew that she wasn’t going to get better and I’d love to know now could we have stopped or weaned her off those medications earlier and just stick with the ones that may have helped her pain. And that I’d love to know and I don’t know it and I don’t know who to ask.
I definitely think the pump could have been put on a lot sooner, you know, and even if it only had the morphine in it and nothing else. First off that would be less tablets, but you knew he was getting his constant painkiller. Because that was the one thing he was afraid of, was pain.
If somebody had have picked out—ok, instead of giving him—I can’t remember how many tablets he was on—but if you had have picked out two or three and said: ok, these are essential, you know, and get these into him, and let the rest go.
It was a joyous day when the pump went on mammy, and we were just so sorry that . . . when we seen how easy it was and we were just . . . everybody just calmed right down and it was very calming and we were just saying: why did we not have this a couple of weeks ago, when we’d seen . . . she really had gone through a lot.
We were just so grateful when the pump came, so grateful. And I was so grateful, because it stopped all the having to take the drugs and all that.
However, the syringe driver was also a source of stress for some, partly because of their perception of its importance in symptom control—they were fearful that the driver would stop
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152 or run out of medication before someone came to change it and that this could result in suffering for their loved one. We used to watch it going down - ‘cos we were sitting all the time with Dad and you’d sort of think—oh my gosh, I wonder how much left . . . we were so scared of it running out because it was the first time that we felt he had any reasonable pain control . . . You’re sitting there watching somebody and you’re thinking—this is getting smaller and smaller, they’re down to two bars, or it’s down to one bar or . . . .
Participants agreed that a ‘‘troubleshooting’’ guide would be helpful to reassure them of what to do in the event of a problem. Another practical issue was that the syringe driver could be cumbersome if the patient was mobile or, for some people, when there were 2 syringe drivers in place. On the other hand, a small number of participants did not have any worries about the syringe driver and felt that it was being taken care of by the palliative care team.
The Use of Medications As Needed for Symptom Control Most caregivers were happy to take on the role of administering as-needed medications. They found it empowering, and it alleviated their feelings of helplessness watching their loved one suffer. I used to feel good giving it to her because you felt, you know, that you were helping; you were physically able to do something instead of just watching them in pain and not being able to do anything, you know . . . .
It could also be a source of stress, however, particularly if there was a choice of more than one medication to give. Tiredness also affected caregivers’ ability to make decisions about as-needed medications. I would have had the choice now of two different ones. I had liquid morphine and another one, and I would have been better off with just one. Because I worried then, well which one should I give him? And it was . . . I didn’t know, even though I knew because it had been explained to me and I wasn’t doing wrong no matter which one I gave, but it was just . . . personally I was terrified . . . . You’re giving so many drugs, so often that you’d be totally confused. And you’re so tired and you’re all brain brillo-padded . . . .
Participants felt that clear written guidelines on how and when to give medications would have made it easier to make those decisions. One participant reported disagreement among different family members about giving as-needed medications. She felt that it was important for the information to be given to the whole family, not just the principal caregiver. Participants were open to the idea of giving as-needed medications subcutaneously, which is currently not the standard
practice in Ireland. Some said they would feel a little apprehensive about it, but they would be prepared to do anything to alleviate their loved one’s suffering. You see someone you love in pain, you’ll do anything . . . it’s not really any more pressure, I feel, than getting a family to give five tablets . . . and that would take much longer . . . .
Other Issues With Managing Medications Access to medications was difficult for some participants for a variety of reasons. Some medications were not covered by the Medical Card—a government scheme that pays for medications for those of lower income or eligible patients with certain conditions. Others were not covered by the drug repayment scheme that subsidies medications for those not eligible for medical cards, so that there is a ceiling amount above which they are not charged further. This could lead to a cost burden on patients and families trying to obtain important medications for symptom control. In order to access medications ‘‘on the Medical Card,’’ the patients must obtain a special script from their GP, even if the medication has already been prescribed by a hospital physician. The potential impact of this is highlighted by one participant: On one occasion then, the doctor couldn’t make out what was written down, so then there had to be phone calls made and all sorts of things until we got it . . . it would always be in the evening time and you’d be trying to get home before, early enough so that you could go to the doctor and all that.
In many instances, there appeared to be a lack of good communication between hospital specialists and GPs. This meant that when the goal of care changed to focusing on end-of-life care at home, the patient’s GP may not have seen them in many months and may not be fully up to date with medication regimens prescribed by hospital physicians. Some participants described issues with pharmacies not stocking the required medications, particularly opioids, sometimes requiring regular visits to 2 separate pharmacies in order to obtain all the medications needed or multiple trips back and forth to the pharmacy to collect medications as they became available. Many families were upset by having an excess of medications dispensed, which were unused and had to be disposed of after the patient died. I felt that was a disgrace actually ‘cos my doctor came into the house when my dad died, you know to sign the death cert and stuff, and he took a black bag of tablets out of my house and he said they’d all be going into the fire thing or whatever. I thought that was an awful waste of taxpayers’ money, to be quite honest, you know. Well, they actually brought six months’ supply in and I couldn’t understand that like, you know what I mean? I kinda knew myself she wasn’t going to be lasting that long because she was slipping away fast.
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Discussion The findings of these 3 focus groups involving bereaved caregivers illustrate some of the issues faced by patients and caregivers managing medications at home. One of the most striking themes to emerge was the impact of trying to administer multiple medications to sick loved ones who are struggling with oral intake. This is especially upsetting for carers, knowing that many of the medications for comorbidities are not benefiting the patient or contributing to symptom control. It has previously been suggested that continuing medications for comorbidities in patients with rapidly changing physical status— and therefore pharmacokinetics—may actually contribute to a hastening of their functional decline.9 This study highlights the additional factors of anxiety and burden, practical and psychological, for caregivers. It is important that practitioners in palliative care consider the burden of polypharmacy and give explicit guidelines to patients and families regarding rationalizing medications, though it should be acknowledged that this can be challenging as some medications for comorbidities can contribute to symptom control, especially when a nonmalignant disease, such as heart failure, is the primary life-limiting illness. Many of the participants of this study had not been given this guidance and had to decide themselves which medications to prioritize. Polypharmacy at the end of life has been well documented, including in patients under the service studied here. A retrospective review had been performed examining the medical records of patients who had died while under the care of the service in the home, hospital, and nursing home settings,10 revealing a high prevalence of polypharmacy at the end of life. Medications for comorbidities were discontinued more frequently in the acute hospital compared to the community setting. Although there is published literature suggesting guidelines to minimize polypharmacy,9,11,16 local guidelines, disseminated to GPs and palliative medicine physicians, may be the most effective way of ensuring that patients do not continue on unnecessary medications that lessen the quality of life. Overall participants had positive experiences with the use of syringe drivers. Continuous subcutaneous infusions were associated with improved symptom control and reduced the pressure on caregivers to be responsible for the management of pain and other symptoms. In fact, the main issue highlighted in the discussions was that it was not introduced early enough. Again, participants expressed that guidelines would be helpful to reassure them of what to do in the event of a problem with the syringe driver. This is especially important in a service that does not have 24-hour telephone support. Although overall there appears to be an understanding of the role of continuous subcutaneous infusions to maintain control of symptoms as patients approach the end of life, misperceptions still do exist regarding the association of the use of syringe drivers and the hastening of death. This highlights the importance of clear communication with caregivers, both in advance of this phase and at the time of commencing the infusion, to ensure that the
indications for the syringe driver and the medications being administered are explained and understood. Advance discussions in the anticipation of future need for such infusions may reduce the risk of distress at the time of transition to a syringe driver. Caregivers viewed as-needed medications in a mostly positive way. They felt empowered by the ability to help ease their loved ones’ suffering. However, the process of decision making around the use of these medications could be a source of stress. It has been previously demonstrated in the literature that caregivers have difficulty making decisions about symptom management at home, and that this can lead to feelings of powerlessness and helplessness, thus increasing carer burden.7 Participants in this study felt that clear guidelines about how to give as-needed medications would ease their anxiety considerably. In all 3 aspects of medication management that this study sought to explore—polypharmacy/administration of medications, the use of syringe drivers, and the use of as needed medications—clear information and guidelines emerged as an important way that health care professionals can ease anxiety for caregivers of patients at the end of life. It was also clear from the discussions that this information needs to be in a written form, as caregivers are often exhausted and under a lot of strain, so that verbal instructions are unlikely to be remembered clearly, or relayed to other caregivers, when needed. Good communication is vitally important in order to adopt a shared-care model with patients and caregivers, allowing them to participate in an informed and meaningful way with health care professionals.
Limitations Data collection was unfortunately limited by time constraints, and saturation of data may not have been achieved. Furthermore, the total number of participants was small and represented a small number of deaths at home. It is possible that potentially eligible caregivers who declined to participate may represent those who had a less positive experience of caring for someone dying at home and therefore potentially relevant and interesting data describing their experiences have been missed. However, this does not take away from the relevance or validity of the data presented here, which highlight issues not previously documented in the literature. Many of the issues raised in this study may be particular to the Irish setting and indeed to this region of Ireland, which is unusual in not having a specialist palliative inpatient unit. Therefore, the findings may not be generalizable to other community palliative care services, such as those with 24-hour telephone support. However, this is an acknowledged feature of qualitative research and is not limited to this study. An alternative concept of ‘‘transferability’’ for qualitative research has been suggested, which focuses on general similarities of findings under similar environmental conditions, contexts, or circumstances.3
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Conclusion This study has presented the experience of caregivers managing medications for palliative care patients dying at home. The impact of polypharmacy on patients and carers has been highlighted, an issue which has not been widely explored in published qualitative literature, but which has a significant impact on those for whom we prioritize quality of life. Specialist palliative care services should consider formulating local guidelines to encourage early rationalization of medications for those with limited life expectancies. This study has also highlighted the importance of clear and written guidance to assist and empower caregivers who are managing medications. Participants in this study indicated acceptance of the potential administration of subcutaneous medications for symptom control, suggesting that further research should explore the potential feasibility and acceptability of this practice in community palliative services, where this is not already being done. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
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