The authors have declared that no competing interests exist.
Conceived and designed the experiments: CRM FSM SB UM. Performed the experiments: SB FSM. Analyzed the data: SB SM CRM FSM. Contributed reagents/materials/analysis tools: CRM SB SM UM FSM. Wrote the paper: SB FSM SM UM CRM.
Those with advanced heart failure (HF) experience high levels of morbidity and mortality, similar to common cancers. However, there remains evidence of inequity of access to palliative care services compared to people with cancer. This study examines patient, carer, and professional perspectives on current management of advanced HF and barriers and facilitators to improved care.
Qualitative study involving semi-structured interviews and focus groups with advanced HF patients (n = 30), carers (n = 20), and professionals (n = 65). Data analysed using Normalisation Process Theory (NPT) as the underpinning conceptual framework.
Uncertainty is ubiquitous in accounts from advanced HF patients and their caregivers. This uncertainty relates to understanding of the implications of their diagnosis, appropriate treatments, and when and how to seek effective help. Health professionals agree this is a major problem but feel they lack knowledge, opportunities, or adequate support to improve the situation. Fragmented care with lack of coordination and poor communication makes life difficult. Poor understanding of the condition extends to the wider circle of carers and means that requests for help may not be perceived as legitimate, and those with advanced HF are not prioritised for social and financial supports. Patient and caregiver accounts of emergency care are uniformly poor. Managing polypharmacy and enduring concomitant side effects is a major burden, and the potential for rationalisation exists. This study has potential limitations because it was undertaken within a single geographical location within the United Kingdom.
Little progress is being made to improve care experiences for those with advanced HF. Even in the terminal stages, patients and caregivers are heavily and unnecessarily burdened by health care services that are poorly coordinated and offer fragmented care. There is evidence that these poor experiences could be improved to a large extent by simple organisational rather than complex clinical mechanisms.
Heart failure is a terminal condition with a greater number of expected life-years lost
The importance of palliative care for those with advanced heart failure and the need to address end of life issues are now well established
Ethical approval (reference 10/S0701/20) from West of Scotland REC 3 was obtained for both phases of the study. All participants gave written informed consent before taking part.
The research was designed in two phases: Phase 1 aimed at patients and caregivers; while Phase 2 was aimed at health professionals. Both employed qualitative research techniques to address the study aims. Normalisation Process Theory (NPT)
The interviews for both phases were carried out by SB, an experienced health services researcher. In both phases interviewing was stopped when interviews revealed no new experiences or insights.
A purposive sampling strategy was used to identify patients with advanced heart failure served by one Health Board in Scotland. Those with advanced heart failure patients were deemed study eligible if they met all of the following criteria:
Grade 3 or 4 NYHA classification HF;
Were symptomatic despite optimal therapy;
Had a history of admissions/multiple health care contacts for this condition.
Exclusion criteria included:
a history of mental impairment that would suggest that they would be unable to give informed consent to participate in the study;
inadequate spoken English that would prevent participation in an interview undertaken in English.
Recruitment was via a heart failure liaison service; primary care; a Heart Function and Supportive Care Clinic; and local hospital admission units.
Participants took part in up to two semi-structured interviews lasting between 30–90 minutes. Caregivers had the option of participating in a combined interview with the patient or a one to one interview. Participants were asked to comment on their experiences relating to: their heart condition; the care they had received; and thoughts on what could be done to improve care. We specifically asked patients and caregivers how they made sense of their condition and planned for the future and what part health professionals played in this. We explored who they interacted with on a daily basis to help with their care and what additional help they would have liked as well as what they perceived as the main barriers to provision of high quality care and how these might be overcome. We also asked them to describe the things they had to do to manage their condition. Finally, we asked them to reflect on previous admission experiences, exploring what factors they believed contributed to their admission and readmission rates generally for those like themselves, and their ideas about alternatives to unscheduled admission.
A purposive sampling strategy was used to identify health professionals who encounter advanced heart failure patients. We sought the perspectives of specialists in heart failure and palliative aspects of care, as well as those responsible for care in the community. Health professionals took part in focus groups and individual interviews, in which they reflected on patient and caregiver experiences captured in Phase 1 which were presented to them in the form of clinical vignettes. They were additionally asked to comment on factors that might promote or inhibit optimal care for advanced heart failure patients.
Interviews and focus groups were recorded and transcribed verbatim. This qualitative data was then analysed using directed content, or ‘framework’ analysis
COHERENCE - sense making work | COGNITIVE PARTICIPATION - relationship work | COLLECTIVE ACTION - enacting work | REFLEXIVE MONITORING - appraisal work |
Patient Characteristics | Patients (n = 30) | |
n | ||
60–69 | 9 | |
70–79 | 16 | |
≥80 | 5 | |
Age range | 60–86 | |
Average age | 72 | |
Female | 8 | |
Male | 22 | |
Less than 10 | 3 | |
10 to 20 | 24 | |
More than 20 | 3 | |
2–4 | 10 | |
5–7 | 17 | |
8–9 | 3 | |
east Deprived | 3 | |
2 | 3 | |
3 | 2 | |
4 | 10 | |
Most deprived | 12 |
General Practice (GPs, Practice Nurses, District Nurses and Practice Managers) | Focus Groups ×3 (n = 29) |
Accident and Emergency Consultant | Interview ×1 |
Medicine for the Elderly Consultant | Interview ×2 |
Cardiology Consultant | Interview ×1 |
Palliative Care Consultant | Interview ×1 |
Cardiology Trainees | Focus Groups ×2 (n = 14) |
Ambulance Service | Interview ×1 |
Heart Failure Liaison Nurse | Interview ×3 |
Palliative Nurse (Heart Failure Interest) | Interview ×1 |
Marie Curie Nurse | Interview ×1 |
District Nurses | Focus Group ×1 (n = 8) |
District Nurse (Out of Hours) | Interview ×1 |
Palliative Care Pharmacist | Interview ×1 |
Pharmacist (Pharmacy Heart Failure Service) | Interview ×1 |
Our findings related to four key problems: knowledge and understanding deficits; difficulties navigating and accessing health and social care support; general challenges and barriers to optimal care; and problems relating to emergency care. Illustrative quotations are provided. Of particular interest was the extent to which patients and caregivers on the one hand and health professionals on the other, agreed regarding challenges that need addressed and the key barriers and facilitators to improved care.
Patient and caregiver accounts revealed that poor knowledge and misunderstanding of the diagnosis and its implications was ubiquitous as the following comment illustrates:
Participant accounts suggest that a lack of candour about the nature of the disease was a feature of the patient and caregiver experience that contributed to poor understanding of the condition and its consequences.
Perhaps because of their poor understanding of their diagnosis some patients failed to recognise the deterioration of their condition over time. While some understood that their condition could not be ‘cured’ or ‘reversed’ they expressed the hope that it would not deteriorate. There was little evidence that many patients were aware of the terminal nature of the condition, even in the very latest stages of the illness.
Both patients and caregivers also had a poor understanding of treatments, their side effects and limitations. This was true for both medications and device therapies. For example, it was clear that patients and caregivers had many misconceptions about the functions of devices such as implantable cardiac defibrillators and the implications of deactivation and described some extremely unsatisfactory exchanges with professionals regarding such issues. Health professionals agreed this was a widespread problem.
Health professionals were sympathetic to patents' uncertainty about the meaning of their diagnosis and about treatments and were aware that inadequate time for communication contributed to poor understanding. They described difficulties communicating patients' complex and poor prognosis, for example, they felt that patients' had unrealistic expectations about, and poor understandings of, a heart failure diagnosis and its trajectory, as illustrated by the following comment:
Consequently, conversations about palliative care were more difficult to introduce and were clearly expected to be more challenging and time consuming. They saw these problems as compounded by cognitive impairment, complicated by co-morbidity and made more difficult by the uncertainty of prognostication. Some professionals stated that they had to consider that patients may not want to know everything regarding their prognosis, perhaps hinting at a degree of paternalism or recognition of denial as a way of coping, the latter seeming likely for some of the patients interviewed.
Current service configurations were seen as the most significant barrier to good communication, as lack of time and continuity were viewed as crucial issues. Professionals were very aware that meaningful conversations about the condition and its implications were likely to be difficult and could not satisfactorily be undertaken within the context of a brief single encounter.
Health professionals were united in agreeing that the care of those with advanced heart failure was extremely important, that current care for this patient group was suboptimal and there was a need for improvement. However, no professional group identified themselves as having key responsibility for those with advanced heart failure and hence for ensuring patients really understood their condition or its implications. Health professionals described a range of obstacles, which did not seem easily rectifiable, that served as barriers to them undertaking a key, care manager role. Heart failure specialist nurses were well placed to address poor knowledge and understanding with on-going reinforcement of information but felt overstretched and short of time for this demanding task. Cardiologists felt constrained by pressure of time in busy hospital clinics. Generalists often felt that they would need specialist advice and support to enable them to identify when patients were entering a terminal phase. It was clear that some professionals lacked confidence and others were unwilling to assume the lead role for care in the terminal phases of this condition for the reasons outlined above.
Those with advanced heart failure expended much effort negotiating with a wide range of friends, family and outside agencies to help them with everyday tasks and to access services.
Patients sometimes felt that their requests for help were considered illegitimate by others making their situation more difficult. Many different health professionals (primary care physicians and nurses, cardiologists, hospice staff and heart failure liaison nurses) could be involved in providing care, and in the absence of clear care plans, patients and caregivers had to decide who best to contact for usual or emergency care based on their previous experiences of care. Primary care physicians, although generally viewed positively were sometimes perceived as lacking the necessary expertise. A palliative care clinic for heart failure and an outreach heart failure specialist nurse service were generally viewed as useful, often because the nurses helped organise things for patients, but also because both provided continuity and longer appointment times.
Participants described both struggles and delays in obtaining social care support and welfare payments. Health professionals described unequal access to aids and support services for heart failure patients compared to cancer patients.
Palliative care and hospice services were accessed by only a minority of advanced heart failure patients. This was thought to be related to problems of prognostication and the difficulty identifying the appropriate point to begin palliative care.
Poor levels of patient and caregiver understanding of the disease also made the subject of palliative care difficult for professionals to introduce.
Polypharmacy is a major challenge for patients. Patients invested much time and effort developing routines to help them to remember when and how to take multiple medications in accordance with physician or pharmacist advice, often relying upon caregivers for help and support.
The organisation and delivery of care posed difficulties for patients. They described poorly co-ordinated and disorganised services that did not communicate effectively with each other, and that led to multiple appointments.
Lack of continuity led to lack of consistency in explanation and advice from different health professionals about key aspects of care.
This included advice about what medications were appropriate and whether they might be candidates for specific treatments.
Professionals pointed to the ways that current service configurations acted as a barrier to the delivery of optimal care and failed to promote integrated care. Short appointment times, a lack of nursing and psychosocial support and lack of capacity to provide continuity of care were barriers to the difficult conversations needed to improve patients' understanding of their illness.
Communication between health professionals was absent at key points.
Hospices were not equipped for active management that many advanced heart failure patients need. A specialist palliative care heart failure clinic model with good links to community medical and social support and long appointment times was seen as the ideal. Advanced heart failure patients were sometimes deemed too complex for generalists to manage and it was suggested that specialist heart failure nurses with an interest in palliative care would be best placed to provide care for this population. There was agreement that the issue of care for advanced heart failure was important but no professional group appeared willing or able to assume responsibility for co-ordinating the complex informational and clinical management of these patients.
Emergency admissions were uniformly described by patients as extremely unsatisfactory.
Consistently bad experiences of admission processes and in-patient stays meant that, patients resisted seeking help until their situation was desperate.
The lack of expert support outside of office hours was unhelpful. Discharge arrangements were also sometimes described as inadequate and could result in further admissions because the problems that had precipitated the initial admission were not satisfactorily resolved.
Health professionals described unclear pathways leading to patients' unscheduled admissions, often out of hours, via emergency rooms. These were universally deemed to be inappropriate. Patients would benefit from clear information on where to seek appropriate help and from whom, especially outside office hours. In such cases, primary care ‘out of hours services’ tended to advise patients to call for an ambulance to take them to hospital, leading to an admission via the emergency department. Inflexible admission procedures within hospitals and ambulance services, prevented direct access to cardiology and led to patients being admitted to inappropriate wards. Solutions such as advance care planning were seen as having the potential to play a part in preventing unnecessary admissions by facilitating fast tracking of patients to appropriate services including hospice services.
We have demonstrated how patients in this study lacked understanding of their condition and appropriate management. Previous research has also highlighted this as a problem
Problems relating to prognostication could prevent palliative care services being offered, so it is clear, that professionals should worry less about this and instead focus on addressing the palliative needs of their patients. This resonates with recent cardiological opinion on this issue
The issues raised here highlight how care for those with advanced heart failure remains suboptimal from a patient and caregiver perspective, and professionals are aware of this. Even though clinical guidelines and health policies have strongly encouraged discussions and planning in end of life care, the literature is clear that poor understanding of the implications of advanced heart failure amongst patients is endemic
Our work has a number of strengths and limitations. Our research was limited to a single geographical location within the United Kingdom. Patients in this area had access to a well developed heart failure liaison nurse service, and therefore may be better served than patients in other locations, particularly rural areas where there is less access to such support services. However, our findings resonate strongly with the existing literature in this field
Addressing the problems highlighted will not require a further guideline but rather a complete reappraisal of how we deal with chronic but inevitably lethal conditions. Currently, patients and caregivers struggle to navigate complex and fragmented health and social care systems that were not designed to address twenty first century health challenges. Instead, services need to be reconfigured in ways that prioritise patient and caregiver complex care needs
Participating patients and health professionals in the West of Scotland.