End-of-life care has been historically associated with cancer. However, there are many chronic conditions that require the appropriate provision of supportive and palliative care, and the specialised training, multidisciplinary collaboration and sensitive communication skills that come with this.
Heart failure occurs when the heart cannot maintain sufficient cardiac output to meet the body's demands for blood supply, both during activity and at rest (Murtagh et al, 2019) and should be at the forefront of end-of-life care services' radar. More than 30% of people die within 1 year of their diagnosis (Nazarko, 2008), yet only a small number of these patients receive supportive and palliative care (Chester, 2010). Patients and families have even reported being denied access (Pooler et al, 2007).
The value of this care cannot be underestimated as not only will it improve the death experience of the person at the end of their life, but also the bereavement experience of their families. In fact, where such care is implemented for people with heart failure, it has actually been shown to improve survival (Connor et al, 2007) and quality of life (World Health Organization, 2018).
Barriers to care
Recognition of the need for supportive and palliative care for people with heart failure is increasing, including within guidelines and frameworks (Department of Health and Social Care (DHSC), 2008; Sherwen, 2011; The Gold Standards Framework Centre, 2011). However, there are still several barriers to its effective provision.
The trajectory of heart failure is highly unpredictable. It is difficult in general to determine when a person is in their final year, months or days of life no matter what their condition, but the turbulent course of heart failure exacerbates this problem (Price and Jones, 2013). In fact, sudden death accounts for 35-50% of deaths within the first 2 years of a heart failure diagnosis and is six to nine times more likely in people with heart failure than it is in the general population (Anderson and Bardy, 2006; Price and Jones, 2013).
Other barriers include a perception among patients that heart failure is benign, and a lack of preparedness, knowledge and education among nurses for approaching and managing end-of-life care conversations with patients.
Identifying solutions
When the Liverpool Care Pathway was phased out (DHSC, 2013), and new priorities of care were developed by the Leadership Alliance for the Care of Dying People (LACDP), the first of these priorities was recognising and communicating the end of life (LACDP, 2014). It specified that the possibility that a person may die within the next few days or hours should be recognised and communicated clearly to the patient and those relatives and friends who are important to them, that this is done using sensitive communication skills (which requires appropriate training) and that decisions are made in accordance with the person's wishes via an ongoing conversation of advance care planning.
For this to happen, the end-of-life care conversation must be started when the person is still well enough to make important decisions such as those regarding treatment, resuscitation, possible deactivation of an implantable cardioverter defibrillator (ICD), and place of care at the end stage of life (Price and Jones, 2013). The Gold Standards Framework (2011) has long recommended use of the question: ‘would I be surprised if this patient were to die in the next 12 months?’ According to Dying Matters (2018), this simple question is accurate 7 out of 10 times.
It is possible this number may be a little lower in the case of heart failure, but it is a useful prognostic indicator, and if advance care planning can begin at that time, this will allow the person to take their time to make all of the decisions that come with nearing the end of life. In fact, advance care planning should begin as early as possible in a person's disease trajectory and then be revised continually.
This approach to the care of the patient with heart failure would aim to ensure that the person has time to come to terms with their condition, that they have the time to reflect on their needs and preferences, and that this information is updated as their condition changes and remains aligned with the person's wishes, which may evolve over time.