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‘My body's falling apart.’ Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers
  1. Bruce Mason1,
  2. Veronica Nanton2,
  3. Eleni Epiphaniou3,
  4. Scott A Murray1,
  5. Anne Donaldson1,
  6. Cathy Shipman4,
  7. Barbara A Daveson4,
  8. Richard Harding4,
  9. Irene J Higginson4,
  10. Dan Munday2,
  11. Stephen Barclay5,
  12. Jeremy Dale2,
  13. Marilyn Kendall1,
  14. Allison Worth1 and
  15. Kirsty Boyd1
  1. 1Primary Palliative Care Research Group, Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK
  2. 2Department of Health Sciences, Medical School Building, Gibbet Hill Campus, University of Warwick, Coventry, UK
  3. 3Queen Mary University of London, Barts & the London School of Medicine and Dentistry, Centre of Primary Care and Public Health, Blizard Institute, London, UK
  4. 4Department of Palliative Care, King's College London, Cicely Saunders Institute, Policy & Rehabilitation, London, UK
  5. 5Primary Care Unit, Institute of Public Health, University of Cambridge, Cambridge, UK
  1. Correspondence to Dr Bruce Mason, Primary Palliative Care Research Group, Centre for Population Health Sciences, University of Edinburgh, Edinburgh EH8 9AG, UK; Bruce.Mason{at}ed.ac.uk

Abstract

Objective Multimorbidity is increasingly common in the last year of life, and associated with frequent hospital admissions. The epidemiology is well described, but patient perspectives are less understood. We report the experiences and perceptions of people with advanced multimorbidity to inform improvements in palliative and end-of-life care.

Design Multicentre study including serial, multiperspective interviews with patients and their family carers; an interpretive analysis of experiences and understanding of living with advanced multimorbidity.

Participants We recruited patients and their family carers using established UK clinical guidance for the identification of people anticipated to be in their last year of life.

Settings An acute admissions unit in a Scottish regional hospital; a large English general practice; a London respiratory outpatient clinic.

Results We analysed 87 interviews with 37 patients and 17 carers. They struggled with multiple changing medications, multiple services better aligned with single conditions such as cancer, and a lack of coordination and continuity of care. Family carers spoke of physical, mental and emotional exhaustion and feeling undervalued by professionals. Patients and carers frequently saw deteriorating health as part of ‘growing old’. Many used a ‘day-to-day’ approach to self-management that hindered engagement with advance care planning and open discussions about future care. ‘Palliative care’ and ‘dying soon’ were closely related concepts for many patients, carers and professionals, so rarely discussed.

Conclusions Patients with advanced multimorbidity received less care than their illness burden would appear to merit. Some people did restrict their interactions with care providers to preserve autonomy, but many had a limited understanding of their multiple conditions, medications and available services, and found accessing support impersonal and challenging. Greater awareness of the needs associated with advanced multimorbidity and the coping strategies adopted by these patients and carers is necessary, together with more straightforward access to appropriate care.

  • multimorbidity
  • comorbidities multiple advanced conditions
  • palliative care
  • qualitative longitudinal research
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Introduction

Delivering better care for the increasing numbers of people with two or more chronic illnesses poses substantial challenges for health and social care systems which have previously focused on single diagnoses with multimorbidity largely ignored.1–4 The need to develop more effective, person-centred care for people living with multiple long-term conditions has been recognised but interventions have shown mixed results.5 ,6 As multimorbidity becomes the norm in the last year of life, patient and carer experiences must inform improvements in palliative and end-of-life care.7 ,8 These patients spend most of their last year of life at home being cared for by family, general practitioners, community nurses and voluntary sector services; many receive outpatient care.9 ,10 Hospitals remain the most common place of death.10 Caring for someone with multimorbidity at home places a considerable burden on family carers.11 While patients with a single, dominant illness often have a keyworker or named specialist, family carers of people with several conditions frequently face the additional challenge of coordinating care from multiple services.12 ,13

While conducting a multicentre study on experiences of coordination of care for people considered by professionals to be in their last year of life, we found significant differences in the care experiences of people with two or more advanced illnesses compared with those who had one readily identifiable diagnosis.12 ,14 We carried out a more detailed analysis of the interviews with this large subgroup (37 of 56 patients and their carers). We classified this group as having ‘advanced multimorbidity’ which we defined as multiple, life-limiting illnesses or progressively deteriorating health due to several long-term conditions.

Methods

Serial, multiperspective interviews were conducted with patients and their family carers recruited in one of three settings: a large, general practice serving multiethnic urban and rural locations in England, an acute admissions unit in a Scottish teaching hospital, and a respiratory outpatients department in a central London teaching hospital.14 Interviews with patients with advanced multimorbidity and their family carers were selected for additional analysis.

Recruitment

Staff in the three settings identified patients they considered to be in the last year of life using the question ‘Would you be surprised if this patient died within the next 12 months?’15 A purposive sampling strategy enabled us to recruit a diverse sample of adults according to their diagnoses, age and social criteria. Patients were asked to nominate a family carer who consented separately to participate. Patients with moderate to severe cognitive impairment and those under 18 years were excluded.

Data collection

Experienced, qualitative researchers (BM, VN and EE) conducted semistructured, serial interviews with patients and case-linked family carers at 8–12 weekly intervals, using a multiperspective approach.16 ,17 Patients were interviewed in their own homes, usually with their family carer if they had one. Participants were invited to talk about their understanding of their health conditions and their experiences of receiving care from different care providers and settings. Each patient was followed for 5–9 months.

Analysis

The interviews were audio-recorded, transcribed and imported into NVivo software for analysis.18 Data from each setting was analysed separately. A constructivist approach was taken and thematic analysis chosen because of its utility in comparing data from divergent sources.19 Cross-case analysis was then conducted to produce an integrated understanding of themes across settings and in different contexts. Interpretive analysis of the subgroup with multimorbidity explored themes pertaining to experiences and understanding of living with deteriorating health due to multiple conditions.

Results

Thirty-seven (66%) of the 56 patients in the larger study had advanced multimorbidity as defined above. Eighty-seven semistructured interviews were conducted with this subgroup: 42 with patients alone, two with carers alone and 43 as joint interviews. Participants completed one (8), two (10) or three (19) interviews. Within 9 months, 11 (30%) had died. The patients had an average age of 76 years (range 55–92 years), and 23 of the 37 were male. They had multiple conditions including heart, respiratory, liver and renal failure, lung cancer, neurological conditions and mild dementia.

Lacking a diagnostic framework to help them make sense of their multiple illnesses, participants drew on lay understanding of their conditions which was reinforced by their experiences of care. To exemplify this, we have divided the findings into two themes: experiences and understanding.

Experiences of care: multiple services

As might be expected, the patient and carer experiences reflected a continuing struggle to cope with multiple care systems, services and staff. At the same time, they tried to maintain a semblance of normality amidst growing feelings of dependency. Participants gave accounts of complicated, confusing and sometimes unresponsive services. Lack of care coordination and continuity among the numerous service providers led to perceptions of inconsistent and impersonal care. No diagnostic label and little explanatory language to describe their health problems made requesting appointments or a general practitioner (GP) visit difficult. Attending clinics was physically demanding and these often failed to address complex, ongoing problems. Many patients took more than 10 different medicines daily. Frequent medication changes, usually associated with hospital admissions, led to doubts about their purpose and efficacy. Carers had to deal with the increasing physical and emotional demands of caring, oversee multiple medications, and do all this with little indication of how long it might last. Patients without a family carer struggled to manage everything by themselves.Carer: ‘There is no consistency in terms of seeing the same doctor all the time. So many changes, so many different doctors…. Each of them is very considerate but clearly clueless about the uniqueness of the patients. And the whole business of having to re-educate and re-inform each time you go in. (Carer for P7—female, 89: syncope, heart disease)Patient: ‘You can phone in and the doctor will talk to you or you can phone a nurse and they will talk to you. ‘Please don't make an appointment unless it is absolutely necessary.’ Well, what do you know is absolutely necessary? I have been rushed into hospital because I have left it too long, because I won't bother them.’ (P8, female, 75: diabetes, hypertension)Carer: ‘It really pays you to keep your own record of these things because, you had been on and off and back on and downgraded and upgraded so many times, it's almost impossible now, to think back and say, what was that for again?’ (Carer for P17—female, 79: heart failure, diabetes)Carer: ‘I said I was going to need some carers to come in at bed time and things because I wouldn't manage on my own, and I was getting things like ‘well you've managed all these years Mrs S’ and I said well he had two legs and he's got one leg now. And I said I'm not as young as I was.’ (Carer for P26—male, 67: chronic obstructive pulmonary disease (COPD); peripheral vascular disease, renal failure)

Understanding of deteriorating health due to multiple conditions

Patients and carers drew on their experiences of the healthcare system, their beliefs about illness and accounts from friends, family and the media to try to make sense of their health problems and treatments. The most common interpretation was that the various conditions suffered by the patient were inevitable effects of aging.Patient: Believe you me what between my kidneys and my heart and my lungs they're all working overtime and they're all beginning to show wear and tear which is only right at my age. (P1, male, 82: COPD, heart failure, renal failure)Patient: I've still got me brain, you see. My body's falling apart but my brain is still alright. I've had a piece taken off me colon. I've got this chest trouble, and I've got all sorts of bits like angina and high blood pressure and, all these little things. That's what I mean by falling apart (laughs). I need MOTs [ministry of transports] every now and again, you know? (P33, female, 90: lung cancer, angina, COPD, osteoporosis)

This understanding of deteriorating health as ‘old but not ill’ was used to rationalise perceived failings of the healthcare system. Some suggested that their care was poorer because they were ‘older,’ leading to complaints about inequity. Beliefs about just being old meant that these people generally focused on living as well as possible in the present. They avoided planning ahead and only sought help if they were very ill or unable to cope. Not depending on services was seen as a way to preserve autonomy, and being a carer was a responsibility to be accepted not questioned.Carer: ‘We deal with everything just as it is happening, just day-to-day stuff and things. We go out to appointments. But you are not really fussy about going out much and things. We just manage.’ (Carer for P11—male, 87: renal failure, mild dementia)Carer: ‘I personally don't want anybody to come in because we cope ourselves and the way we cope is because we cooperate with one another you know. The way I look at it is it's for better or worse isn't it?’ (Carer for P2—female, 76: heart failure, renal failure, diabetes)Patient: ‘If I'm not ill I don't go to the doctor's, I don't go to a hospital; you know what I mean?’ (P35, male, 69: lung cancer, COPD, emphysema)

There was little evidence of integrated care planning or any open discussions about the future between patients, family carers and health professionals. Talking about planning ahead or deteriorating was viewed negatively by some people who had no experiences of doing so. Patients and carers were often unaware of the patient's risk of dying. When a crisis or death did occur, it often felt unexpected, even if the GP had hinted that it could happen at any time. None of the participants showed any understanding of the potential benefits of planning ahead to optimise quality of life and death. Deteriorating health due to multiple illnesses was interpreted as ‘getting old’ so palliative care, which was largely associated with managing imminent death, had no role to play.Patient: Nope, nope nobody has ever … said anything to me about that and I've never broached the subject ‘cause I think I'd rather be positive. I think I'm not going to get worse. (P5, female, 66: liver failure, diabetes, heart disease)Carer: [Her death] was totally unexpected. [The GP] did say to me, just after Christmas when he had been up…. And going outside, he says, she is on a knife edge, I hope you are prepared. It could happen anytime. I'd say, for the past year and a half.’ (Carer for P2—female, 76: heart failure, renal failure, diabetes)

Discussion

Summary of findings

Patient experiences of multimorbidity towards the end of life were mostly of progressive physical decline with increasingly frequent episodes of acute deterioration, multiple changing medications, progressive loss of autonomy, poor or inconsistent communication, and inadequate continuity of care from numerous but disconnected services. Consequently, the physical and emotional burden of managing care usually fell on the patient or a family carer. Lacking a coherent framework to articulate their experiences and problems, patients and carers tended to interpret their deteriorating health and its consequences as a case of ‘getting old’ rather than being progressively more unwell. As a result, they sometimes failed to seek the right help and support, or did not receive it, from care systems not configured to respond to their needs. For these people dying from multiple advanced conditions, the daily burdens were great and crises were common yet there was little evidence of proactive and coordinated services delivered as part of a person-centred palliative care approach.

Strengths and weaknesses

The involvement of three research teams, a shared protocol, purposive sampling of participants with diverse diagnoses receiving a broad range of services, and structured data integration and analysis enabled us to highlight diversity and commonality in the different settings. Serial interviews helped establish close relationships with participants and showed how services were experienced over time. Use of the ‘surprise question’ meant we recruited patients with multiple advanced conditions whom clinicians considered to have a considerable disease burden and a substantial risk of dying within the next year. However, this meant that our participants were identified largely on the basis of physical health problems likely to have a poor prognosis. Concurrent mental health problems were probably under-recognised. Patients with moderate to severe cognitive impairment had to be excluded because of difficulties with consent and participation in an interview study. This group of patients approaching the end of life and their carers had experiences of poor care coordination and polypharmacy that were similar to the wider population of patients who have multiple chronic illnesses. In addition, such patients have a high risk of further deterioration, unplanned hospital admissions and poor end-of-life care.8

Comparison with existing literature

Our results confirm the difficulties patients and carers face in conceptualising chronic illnesses. Patients can regard chronic obstructive pulmonary disease as a ‘way of life’ rather than an illness.20 Patients with heart failure rarely understand the condition or treatment aims.21 Participants in this study regarded their health problems due to advanced multimorbidity as a normal part of ageing, albeit sometimes prematurely. Patients and carers thought crises occurred when one particular problem became acute, and were resolved when that problem was treated. In this respect, the experiences of people with advanced multimorbidity are analogous to the fluctuating health associated with advanced organ failure. Uncertainty impacts on all aspects of the well-being of patients and carers.22 ,23

Just as people with non-malignant conditions such as heart failure or chronic obstructive pulmonary disease get less support for an equivalent symptom burden compared with those who have lung cancer, people with advanced multimorbidity appeared to seek and obtain less support and care coordination than their total burden of illnesses would merit.21 ,24 Their experiences and understanding of their illnesses and available services were generally poorer than patients with a single illness.12

Despite calls for earlier palliative care, in practice it often starts in the last few weeks of life or the patient does not receive palliative care at all.25 Although many participants would have benefited from a palliative care approach (providing holistic and anticipatory care), it was generally only those with a secondary cancer diagnosis who were in receipt of any generalist palliative care. Patients and carers without a cancer diagnosis did not discuss the possibility of palliative care unless they were prompted. In a recent study, around 80% of people with one or more advanced non-malignant illnesses died before they were identified as having the potential to benefit from generalist or specialist palliative care.26

The actions of patients and carers can be understood as a form of lay epidemiology.27 Without a clear understanding of multimorbidity, patients and carers develop ‘empirical beliefs in a partial and piecemeal manner’ from direct and indirect experiences and through drawing on ‘metaphors’ to explain their condition.27–29 In this study, the metaphor most frequently used to explain their health to others was one of the body ‘failing like an ageing car’. In a review of metaphors in palliative care, Southall described several potentially empowering examples, such as considering oneself to be ‘at war’ with a disease, which are commonly adopted in cancer.29 In the context of deteriorating health due to multiple advanced conditions, a metaphor that focuses on the inevitability of breakdown due to ageing risks disempowering patients and family carers and may lead to a fatalistic acceptance of their situation.

Our results also reflect Townsend's analysis of living with multimorbidity being that of an attempt to maintain a sense of normality wherever possible.30 One approach our participants used was to minimise their use of services and to seek support from relatives and informal networks of friends and neighbours instead. Another was to maintain as many routine activities as they could manage for as long as possible. Chochinov portrays these types of activities as ‘dignity conserving’ in that they seek to preserve a sense of self-worth, identity and autonomy.31 ,32 Our participants’ actions can therefore be seen as rational responses to their experiences. Many in the study used a ‘day-to-day’ approach to self-management that limited engagement with advance care planning and open discussions about future care. Some patients also found it a negative experience to talk about the future in this way. An European Union study has shown that a large proportion of the public prefer to not make decisions about their care in advance of incapacity and that financial hardship, educational attainment, age, and preferences regarding quality and quantity of life require further examination in relation to shared decision-making.33 This study helps explain some of the understanding and behaviours that influence engagement in advance care planning.

Conclusions and policy implications

This study reveals important aspects of the experiences of end-of-life care in patients with advanced multimorbidity and their family carers that should influence future service developments. We agree with Mercer that an understanding of multimorbidity as the coexistence of two or more morbidities is too simplistic.34 It risks reducing a patient to the sum of their illnesses and so potentially underestimates the totality and complexity of their needs and experiences. We suggest that what is required is the holistic management of such patients by generalist clinicians in the community providing continuity of care and overall care coordination, and accessing specialist care where necessary.4 ,6 ,35 ,36 Interventions which can enable professionals and services to deal with more than just the acute problem will be required to provide individualised care based on a holistic understanding of patient and carer needs.37 This may require additional resources or changes in primary care systems to support better recognition and planned care of people dying unpredictably with multiple illnesses. Reducing the negative impact of unplanned hospital admissions is important, for example through good coordination with out-of-hours providers. The burden of multiple, changing medications could be mitigated in part through routinely providing information and support when changes are proposed and by arranging periodic reviews of medication in collaboration with patients and family carers. Facilitating their own strategies for living as well as possible with advanced illnesses requires greater dialogue about the benefits of accepting more help and how best to provide it.

We need a change of culture to encourage proactive care while at the same time helping to maintain a sense of identity as a ‘normal’ old person. Systematic approaches that will help professionals identify their patients with advanced multimorbidity are crucial so that their individual needs and preferences are assessed and their current and future care can be discussed and planned for. Such developments will need further research into the epidemiology of advanced multimorbidity and how to support people to ‘live well’ with inherent uncertainty while planning for inevitable future deteriorations in health. Many, but not all, patients prioritise quality of life over life-prolonging treatments and usually value the chance to discuss their views and concerns about care at the end of life.38

The term ‘palliative care’ and its association with dying in the near future is an important barrier to patients accessing an early holistic and anticipatory approach which could improve quality of life and prevent and address psychosocial and existential distress.8 Routine ‘anticipatory planning’ for expected deterioration in chronic illness, which can be extended in scope as the illness progresses may be more acceptable to patients and professionals. More and more of us will face many years of living with multimorbidity: the challenge is to make those years as healthy as possible.

Acknowledgments

Ethical review was performed by the South East Scotland Research Ethics Committee 02 and governance approval granted from NHS Lothian, Coventry Teaching PCT and Warwickshire PCT and King's College Hospital NHS Foundation Trust. The authors thank the funders of this research, NIHR Service Delivery and Organisation Programme. The authors thank all the patients, carers and professionals who participated in the case studies, and also thank Bruce Guthrie for comments on an earlier draft of this article.

References

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Footnotes

  • Contributors BM, VN, EE and AD were involved in data generation, analysis and interpretation. KB, SAM, DM, JD and MK were involved in the conception and design of this study, data analysis and interpretation. AW and SB were involved in the conception and design of this study. All authors were involved in drafting and revising of the report, and final approval of the version to be published.

  • Funding National Institute for Health Research (grant number: 08/1813/258).

  • Competing interests None.

  • Patient consent Obtained.

  • Ethics approval Lothian Research Ethics Committee (10/s1102/17).

  • Provenance and peer review Not commissioned; externally peer reviewed.

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