Despite poor prognosis for CHF, patients and carers reported very little or no discussion with staff which directly addressed their concerns in this area, and this appeared to affect their psychological morbidity. This supports the findings of other studies.17,18,28,29
Patients had rarely discussed their thoughts and feelings regarding death and dying with family members. The silence around end‐of‐life issues was a source of fear and anxiety for both patients and carers, and points to a major gap in services currently provided. However, these novel, integrated data provide guidance for improving care in line with policy directives.
Although patients with CHF and their carers are uninformed and not consulted about their end‐of‐life preferences, the willingness of participants to discuss their preferences in this study highlights the feasibility of raising these issues.18
This may help reduce the fear and anxiety identified among both groups.
The difficulty of prognosticating in CHF, commonly recognised in the literature,30,31
was found to be a barrier to discussing end‐of‐life issues. As Stewart and McMurray state,32
this can lead to “prognostic paralysis” and prevarication in respect to end‐of‐life discussions. Another major barrier relates to the reluctance of cardiac staff to recognise the need for and initiate such discussions, and their need for training in how to conduct sensitive conversations addressing future planning with patients and carers. This supports the findings of other studies.33,34
We make the following three feasible and acceptable recommendations that are informed by patient, family and clinical perspectives (box 1).
- Sensitive provision of information and discussion of end‐of‐life issues with patients and families, early in the course of the disease trajectory, owing to the high incidence of sudden death in this patient group.8,9
- Mutual education of staff. Training is imperative if cardiac staff are to accommodate diverse patient and family care preferences such as those found in this study, and to handle sensitive discussions of prognosis in a way that allows patients to “hope for the best, and prepare for the worst”.35
- Mutually agreed palliative care referral criteria and care pathways for patients with CHF. Referral criteria and care pathways would clarify staff roles, provide routine assessment of the need for palliative care, facilitate referral to palliative care services when necessary and enable flexible care, including preferred place of death.
Box 1: Recommendations for clinicians
- Improved communication
- Sensitive discussion of end‐of‐life issues and preferences with patients and carers
- Mutual education of staff
- Communication skills training for cardiac staff
- Training in management of chronic heart failure (CHF) symptoms for palliative care staff
- Aim: generalist care with support from and access to specialist palliative care
- CHF referral criteria and care pathways
- Clarification of specialist roles and when to refer
- Routine assessment of the needs of palliative care
- Flexibility of care, including place of death
There are several limitations to this study. The setting has a specialist palliative care team on site, local community teams and hospices, therefore this population may be relatively well served. There is likely to have been sample bias, because of less advanced patients being recruited, although interviewing at home and in wards and clinics reduced this bias. Although not every patient had a family member, and not all of them consented to participate, the analysis showed saturation of data.
Through integration of data from multiple sources, the triangulation of findings has enabled a perspective on end‐of‐life care for patients with CHF and families that, while being broadly supportive of previous studies, is the first to investigate concurrently clinical and patient views and experiences. Further research is necessary to develop specific interventions and care pathways, and to evaluate outcomes for patients and families, including preferred place of death, pain and symptom control, spiritual and psychological well‐being, and bereavement outcomes.