Defining advanced or end-stage heart disease

A number of studies have evaluated ways of identifying patients with cardiac diseases who may be suitable for palliative care24 ,25 with an ongoing debate as to whether the needs of the patient or prognosis should trigger identification. Patients with a limited prognosis who are socially and medically well supported may need limited input from a specialist palliative care team and an approach focusing on proactive planning for the future may be ideally suited to this type of patient. Patients who have complex medical, social, family and spiritual needs are more likely to need specialist palliative care involvement to support ongoing care by the patient's cardiologist and general practitioner (GP). In both instances, prognosis is important but recognising the uncertainty of a patient's prognosis may be just as important and in itself should trigger discussions about planning for the future. Prognosis can be estimated or assessed using heart disease specific26–29 or generic30 ,31 clinical prognostic tools while other tools are sometimes used to assess the need for specialist palliative care.24 ,25 ,32 Natriuretic peptides may have a role in the identification of patients in need of a palliative approach to care. Prognostic scoring tools are reasonably accurate in large populations but given that the illness trajectory of the last year of life for an individual patient with advanced heart disease is so difficult to predict, they should be used to support clinical decision-making and should not replace the clinical judgment of senior clinicians and the wider multidisciplinary team (figure 1).

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Figure 1

Defining the ‘end-of-life’ phase and ‘dying phase’ (adapted from Neuberger J, Guthrie C, Aaronvitch D. More care, less pathway: a review of the Liverpool care pathway. Department of Health, Crown Copyright. 2013).

Planning improves end-of-life care for all patients with advanced heart disease

Heart failure is not the only cardiac condition associated with poor prognosis. Many older patients with advanced heart disease are at increased risk of death either because of their cardiac disease or due to comorbidities such as chronic kidney disease, chronic lung disease, cerebrovascular disease or dementia. A common problem is that prognostic uncertainty, lack of knowledge and confidence leads to a failure to initiate and pursue discussions about end-of-life care between cardiologists, patients and their families.33 ,34 While this is improving, there continues to be uncertainty about when to approach patients, whether doing so will remove hope and if a patient's condition might improve following the introduction of additional evidence-based treatment. Cultural change is needed if we are to address these barriers. A positive but realistic approach combines best-evidence cardiology treatments with realistic conversations about deteriorating health and the possibility of a patient dying.

Future care planning

Planning ahead for deteriorating health in the future (future care planning, FCP) has two components that may be offered sequentially or together depending on the patient's circumstances. Advance care planning is a process by which a person chooses to make plans about their future health that will take effect if they deteriorate.

The main elements of Advance care planning include a discussion with the patient and their family about their views on the following aspects of planning ahead:

1. Nominating a power of attorney or a surrogate decision maker if the patient loses capacity

2. Any preferences for place of care should they become more unwell, seriously ill or be dying

3. Preferences for treatment options including withdrawal of life-prolonging treatments (eg, internal cardiac defibrillators (ICDs))

4. Cardiopulmonary resuscitation and its likely outcome in the person's current or a possible future health state.

An anticipatory care plan is a valuable aid to care coordination for people with long-term conditions who are at risk of deteriorating such as patients with advanced heart disease. It is an individualised, care-record describing the actions, interventions and responses that care providers should consider following an acute deterioration or a sudden change in the patient's condition or home circumstances. In Scotland, the discussion includes seeking patient consent for their anticipatory care plan to be recorded in an electronic key information summary that is shared with emergency care services, primary care and hospitals.35 If the patient is deteriorating and would benefit from more coordinated care from their primary care team, the benefits of being included in a practice palliative care register are often discussed.

Future care planning interviews offer an ideal opportunity to review clinical care and enable patients and families to ask questions about their health problems and its management. They are then invited to talk about their goals and priorities so that these inform planning ahead and talking about advance care planning and/or agreeing with an anticipatory care plan. Previous trials using this type of approach in patients with chronic medical conditions, including heart failure, have indicated that it reduces hospital admissions, healthcare resource utilisation and improves patient satisfaction and quality of life.36 ,37 FCP is appropriate at any stage of a patient's illness (figure 2). The process should establish good communication and shared decision-making with the patient and their family as a fundamental part of ongoing care. FCP can be delivered by a wide range of health professionals as a way of introducing the concept of holistic palliative care to the patient and their family. It seeks to gradually shift the focus from medically orientated treatment outcomes to the personal goals of the patient38 (table 1).

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Figure 2

Staged implementation of advance care planning, anticipatory care planning and integrated end-of-life care planning.

When and where should FCP take place?

Discussions about FCP take time and require appropriate training of healthcare staff in order to ensure that interviews are done in a sensitive and effective way. Ideally, the initial interview should be in a quiet non-clinical environment, at a time when the patient is stable and well enough to participate. If it follows an acute event or unplanned hospital admission, the patient and their family can reflect on what could have happened at a time when they are feeling positive that the patient has recovered well. FCP discussions are an essential part of preparing people for ICD implantation to address and plan for the potentially difficult situations that can arise towards the end of life in a patient with an ICD. In addition, the risk of death, even with ICD, remains relatively high at around 7–10% annual mortality in recent trials with optimal medical and device care.39

Which patients with heart disease benefit from FCP?

Until recently much of the emphasis on timely introduction of palliative care has focused on heart failure. There are strong arguments for including people with all forms of advanced heart disease. Older patients with aortic stenosis or myocardial infarction present to acute cardiology services offering an opportunity for assessment of palliative care needs. Patients with advanced congenital heart disease present a specific challenge.

Who should initiate FCP for people with heart disease?

The general practitioner is ideally placed to start the process of FCP but concerns about judging prognosis in complex patients with advanced heart disease can mean they wait until the patient is very unwell or until the specialist recommends initiating palliative care.47 Many elderly patients are under the care of a number of hospital specialists with numerous clinic appointments. This creates a complex web of specialist-expertise around the patient which has the potential to mask their true functional and clinical status and hinder well-coordinated care delivered by primary care clinicians. When a patient presents to a cardiologist with an acute event such as myocardial infarction or acute heart failure, due to systolic dysfunction or aortic stenosis, this condition is likely to become the principle driver of the patient's prognosis. This is an appropriate time to start FCP discussions and the cardiologist is well placed to discuss the likely course of the illness, deactivation of ICD (if present) and cardiopulmonary resuscitation.

For patients with heart failure, specialist nurses have a key role in discussing FCP. These nurses manage patients with CHF in a holistic and multidisciplinary way, know the patient and their family well and have good relationships with general practitioners. Unfortunately their involvement is commonly targeted at people with systolic heart failure. If we are to improve the delivery of end-of-life care across a broad range of patients with heart disease then this needs to change.

FCP as an ongoing process

Future care plans, whether documented as a paper or electronic record, need to be widely shared and should be dynamic documents. They should reflect the goals and preferences of the patient and represent a process of shared decision making and planning with key professionals. A review interval, dependent on the needs of the patient, is important.

FCP discussions need to take account of how quickly the patient's health is deteriorating and their readiness to consider palliative and end-of-life care (figure 2). If the patient is fairly well and is coping well by living day to day as is often the case in people with a long-term condition such as heart disease, a sensitive discussion about what might be important if they were to deteriorate is often acceptable as in Stage 1. This may result in advance care planning. Should the patient deteriorate further (Stage 2) with a higher risk of deteriorating and dying, such that it would not be a surprise if the patient's life expectancy was less than 1 year, these early discussions can be extended.

If the possibility of dying is raised then the person's concerns and goals should be explored to inform more specific discussions about supportive and palliative care including developing an individual anticipatory care plan. In the last days of life (stage 3), the focus of discussions will be on what happens when someone is dying and planning for good care of the patient and family at this time.48

Future research

There is a need for research to assess the best ways to introduce FCP discussions with all patients who have advanced heart disease and optimal processes for information sharing and care coordination to deliver it effectively. Electronic records provide an ideal system for sharing key information about future care plans but need to be accessed and used by professionals in primary and secondary care and regularly updated. Testing electronic record solutions for information sharing and information reconciliation as the patient moves between care settings is essential. Trials in cancer care suggest that informed approaches to FCP discussions with patients and families are acceptable and effective but further studies are need to confirm the same outcomes in people with other conditions and illness trajectories such as heart disease.

A phase 2 randomised controlled trial of an FCP intervention around the time of discharge after an acute cardiac unit admission with patients who have advanced heart disease will be completed shortly.44 There are a number of challenges in the design and delivery of larger trials. Many acute hospital and primary care services in the UK are introducing some form of FCP on an empirical basis, although few have done so systematically. In Scotland, the electronic key information summary35 provides a unique opportunity to deliver FCP as a consistent process for all patients with advanced heart disease. Other print and electronic systems are in development in other parts of the UK and internationally that may have a similar potential. Barriers to engagement with FCP are well documented and need to be considered and addressed.