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Identifying treatment burden as an important concept for end of life care in those with advanced heart failure

Jani, Bhautesha; Blane, Davida; Browne, Susana; Montori, Victorb; May, Carlc; Shippee, Nathand; Mair, Frances S.a

Current Opinion in Supportive and Palliative Care: March 2013 - Volume 7 - Issue 1 - p 3–7
doi: 10.1097/SPC.0b013e32835c071f

Purpose of review The concept of treatment burden is receiving increasing attention and this review seeks to show that treatment burden is an important issue for end-of-life care in those with advanced heart failure.

Recent findings Review of the qualitative literature on patient experience of end-stage heart failure since the year 2000, including 2012, suggests that treatment burden, the work that patients have to do to manage their condition, is a readily identifiable concept in advanced heart failure. Treatment burden relates to four main areas of work, namely: coherence (sense making work) which refers to the work of developing an understanding of the illness (including its implications), treatment and management; appraisal, which refers to the work of judging, monitoring and adjusting treatments; relationship work which describes the effort put into engaging with others for support; and enacting work, that is the effort put into operationalizing treatments, which includes activities such as taking medications, attending appointments, enduring side effects of treatments and dealing with communication difficulties.

Summary Treatment burden has the potential to be an important barometer of quality of care from the patient perspective in advanced heart failure.

aDepartment of General Practice and Primary Care, Institute of Health and Wellbeing MVLS, University of Glasgow, Glasgow, Scotland, UK

bDivision of Healthcare Policy and Research, Department of Health Sciences Research, Mayo Clinic, Rochester, Minnesota, USA

cFaculty of Health Sciences, University of Southampton, Southampton, England, UK

dDivision of Health Policy & Management , School of Public Health, University of Minneapolis, Minneapolis, USA

Correspondence to Professor Frances S. Mair, General Practice and Primary Care, Institute of Health and Wellbeing MVLS, University of Glasgow, Glasgow, UK. Tel: +44 141 334 8335; e-mail:

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Chronic heart failure is a common condition with high rates of morbidity and mortality. Much emphasis has, therefore, been placed on advances in those pharmacological therapies and devices that demonstrably improve outcomes. We have previously noted [1] the implicit assumption in the literature that those with heart failure are expected to be motivated to adhere to treatment and to be sufficiently well organized to do so. Living with heart failure, thus, appears to require high levels of self-efficacy, demanding not only concordance with therapeutic regimens but also regular symptom monitoring, dietary controls, and lifestyle discipline, even in the very last days of life. This means that self-efficacy, although necessary, is not in itself sufficient. The ‘work’ of living with heart failure also includes multiple and complex interactions with others. These encompass not only direct aspects of symptom assessment and medication management, but also the co-ordination of information and resource mobilization. It may also include multiple administrative encounters with health insurance and welfare agencies.

Managing end-stage heart failure on its own is, therefore, a constant and demanding job of work. It is frequently complicated by comorbidities that also generate a significant volume of work. The general problem of comorbidity has only relatively recently begun to attract attention [2]. Most heart failure patients are multimorbid [3] with reports of more than 80% of heart failure patients over the age of 65 years having four or more comorbidities [4]. We can characterize this problem as one of cumulative complexity [5▪] wherein, over time, the (increasing) workload of self-care interacts negatively with the patient's (diminishing) capacity to engage with that work. Surprisingly little, however, is known about patients’ experiences of the burdens of self-management. Understanding such issues has been suggested as critical to developing clinical guidelines and quality standards that are in line with patients’ wishes [1].

Box 1

Box 1

Recently, patients’ experiences of treatment burden in chronic disease have begun to be explored [6▪,7–10] with the development and elaboration of general explanatory models [5▪,8,11] and a preliminary taxonomy of treatment burden [6▪]. However, the issue of treatment burden in a palliative care context has not yet been examined. In this review we examine whether treatment burden is an essential concept to consider in those with end-stage heart failure.

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We undertook a systematic review of the qualitative literature relating to patient experience of heart failure. Qualitative studies in peer-reviewed journals that aimed to understand the patient experience of heart failure management were sought. Limitations of English language and year of publication 2000 onwards were set. An exhaustive search strategy was employed, consisting of a scoping search and database searches (Scopus, CINAHL, Embase, Medline and PsycINFO) as well as citation searching. Articles were screened, data extracted, quality appraised and analysed by two individuals, with a third party for disagreements. Data were analysed using a coding framework underpinned by Normalization Process Theory [11,12]. This provides an explanatory framework for self-management processes and the issue of treatment burden in those with end-stage heart failure. Further details of the review protocol have been published elsewhere [13,14]. In total, 3665 articles were screened and 56 references identified. Sixteen of these [15–33] met our review criteria and focus particularly on palliative care issues. Here we present an overview of our main findings.

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Even though clinical guidelines and health policies have strongly encouraged discussions and planning in end-of-life care [34▪▪], the literature is clear that poor understanding of the implications of advanced heart failure among patients is endemic [31,35▪▪,36,37]. The concept that individuals have to ‘work’ to make coherent their diagnosis and its implications has previously been suggested in a UK study of those with stable heart failure [6▪]. Uncertainty appears ubiquitous and posed problems for those with end-stage heart failure, sometimes leading them to feel disempowered in terms of their ability to influence decisions about their end-of-life care [6▪]. Those with end-stage heart failure were described as having clear preferences with regards to death and dying but generally felt that they had little opportunity to influence their future. They rightly regarded this as unpredictable [18]. Even so, Gott et al.[25], note that ‘Hope for the future was also noted by other participants as enabling them to ‘keep going’ and again this involved not thinking about the future and, in particular, death and dying’. This poses interactional challenges for health professionals [34▪▪]. Importantly, the problem of lack of understanding was not limited to knowledge deficits in relation simply to prognosis, but also extended to issues crucial to successful self-management such as appreciating the signs of deterioration that would indicate it was appropriate to seek help [19]. Thus, general uncertainty has the potential to lead to potentially avoidable hospital admissions.

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Appraisal work

Although some individuals with end-stage heart failure were clearly aware of the serious implications of their condition, and were considering issues such as advance directives and place of death, they clearly had not fully grasped all the pertinent issues. For example, the subject of implantable cardiovascular defibrillators and the option of deactivation was rarely addressed [18]. Other recent publications have highlighted this as an emerging problem [35▪▪,38]. Overall, the literature suggested that patients perceived that they had unmet information needs and that more time and effort needed to be put into providing explanations and education about their condition [21].

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Relationship work

Those with end-stage heart failure have to engage with health and social care professionals but also a wide range of others, most notably friends and family, to help them cope with the limitations posed by their condition and the demands of their treatments. This work was made more difficult because it is not only patients that do not fully appreciate the seriousness of their condition; it is clear that this general knowledge deficit extends to friends and family. The fact that carers and the patients’ wider circle of friends and family do not grasp the gravity of the patient's condition makes life even more difficult for those with end-stage heart failure, as they can feel that their requests for assistance are not seen as ‘legitimate’ as the following excerpt suggests, ‘They see me, they can not see how ill I am, and they seem to think I exploit my wife by letting her carry the bags’ [22]. Patients are not only concerned about what others think about them, they themselves feel uncomfortable about having to ask others for help, as they can perceive their requests for help unjustified due to their limited understanding of the seriousness of their condition.

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Enacting work

Those with end-stage heart failure have to undertake many tasks. Some of these relate to actions they must undertake themselves, whereas others relate to work they have to undertake to engage with health, social care or other services. These two aspects of self-care were evident throughout the literature and it was clear that even in the terminal phases of a chronic illness the self-care demands were great.

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Undertaking self-care tasks

Suggestions that those with heart failure should adopt certain lifestyle restrictions, such as reducing salt intake, are well recognized. Health professionals routinely recommend that those with heart failure should restrict salt intake, and monitor weights and fluid intake with little consideration of the burden enacting such advice may impose on those with the condition. A good example was illustrated in a study discussing the experiences of those with end-stage heart failure in relation to fluid intake.

‘Those with severe heart failure struggle against an invincible need to drink, failing to keep to the restriction on drinking water and cannot find anything that helps to slake their thirst, for more than a short time’ [30]

Individuals with advanced heart failure expend a great deal of effort monitoring weight, nutrition and other indices of clinical status [31].

The adverse impacts of polypharmacy on the daily lives of those with end-stage heart failure should not be underestimated, as this was a recurring theme. This related not only to the effort required to ensure adherence to complex medication [20,23] but also to the fact that taking the medications meant individuals had to endure a range of adverse side effects. For example, articles described how planning outings could be ‘fraught’ because of the need to urinate frequently due to the diuretics that were being taken [29,23].

Self-care tasks also included the work of attending appointments for investigations and follow up [31], all of which can be a considerable effort for those with advanced disease.

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Coping with communication problems and discontinuity

Health service delivery was generally described as fragmented and continuity of care a rarity rather than the norm. This was described as a major burden for those with end-stage heart failure. Having a long-term relationship with a particular health professional, who took an interest in them and had good communication skills was highly valued but apparently uncommon. More frequently, end-stage heart failure patients described far less positive experiences, describing ‘professionally-led models of care’ rather than ‘a partnership approach’ [28]. Worryingly, it was clear that some actually ‘feared that professionals would take sanctions against them if they complained or were perceived as difficult’ [28].

Discontinuity and healthcare systems that did not provide time for longer consultations also served as a real barrier to quality of care as end-stage heart failure patients would describe being unable to discuss their concerns about unpleasant symptoms, even in their dying phases, because of such problems [25]. Fragmented care was also noted to adversely affect patients’ general confidence and self esteem [15]. A recent review has also highlighted this as an important deficit [36].

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The concept of treatment burden is useful when considering end-of-life care for those with heart failure. Important components of treatment burden – coherence and appraisal work, relational work, and the work of enacting and operationalizing treatments – are as readily identifiable in those with end-stage heart failure as they are in those in the earlier phases of the disease [6▪]. The research literature reviewed in this article illustrates how patients in the final phases of their disease still struggled to develop a coherent understanding of their condition and its appropriate management and were burdened by problems of discontinuity and uncoordinated care. Problems of uncertainty were pervasive in patient and carer accounts of their experiences and encounters with healthcare systems and health professionals. The notion of treatment burden is important because it can serve as a real barometer of quality of care from the patient perspective. It is also an entity with clearly identifiable components which suggests that it should be measurable. Considering treatment burden would force us to begin to move away from the prevalent disease centred care to more person centred models of care. In practical terms, this means that those providing palliative care for individuals with advanced heart failure, need to focus on supporting patients and carers to undertake all the forms of work identified so as to reduce the demands placed on patients and carers. There is a need to ensure care provision that prioritizes the goals of patients and caregivers, taking into account their personal context and prognosis.

The issues raised here highlight how care for those with end-stage heart failure remains suboptimal from a patient perspective. There are already abundant guidelines and policies emphasising the need to improve care for this patient population. Addressing the issue of treatment burden will not require a further guideline but rather a rethinking of our current approaches and models of care for this patient population so that they become more tailored to meeting the needs and wishes of those at the end of life rather than aimed at suiting the convenience of the healthcare systems or health professionals serving them.

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We would like to thank the Caring Together programme [http://] a partnership programme by Marie Curie Cancer Care, British Heart Foundation Scotland and NHS Greater Glasgow and Clyde.

C.M. is the developer of Normalization Process Theory and both F.S.M. and V.M. have been advocates of its use (as evidenced by previously published work). The opinions expressed are those of the authors not the funders.

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Conflicts of interest

F.S.M., S.B. and C.M. received external grant funding from the Caring Together programme [], a partnership programme by Marie Curie Cancer Care, British Heart Foundation Scotland and NHS Greater Glasgow and Clyde to examine patient perspectives on the management of end-stage heart failure. F.S.M., C.M. and V.M. received funding from the Chief Scientist Office Scotland (Project CZG/3/22) to specifically examine the issue of treatment burden.

There are no conflicts of interest.

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Papers of particular interest, published within the annual period of review, have been highlighted as:

  • ▪ of special interest
  • ▪▪ of outstanding interest

Additional references related to this topic can also be found in the Current World Literature section in this issue (pp. 116–117).

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advanced heart failure; quality of care; treatment burden

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