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Josephine G Paterson

End of life care services for patients with heart failure Charnock LA (2014) End of life care services for patients with heart failure. Nursing Standard. 28, 51, 35-41. Date of submission: December 9 2013; date of acceptance: April 30 2013.

Abstract Heart failure has high incidence and prevalence in the UK. However, access to palliative care services for patients with heart failure is inequitable. Patients with heart failure often do not receive specialist palliative care at the end of life, or referral is made only in the last days of life. This results in lost opportunities for advance care planning, psychological support for patients and families and symptom management. Prognostic tools are useful in ensuring appropriate referral. However, the controversy regarding the Liverpool Care Pathway has created uncertainty for healthcare professionals, patients and families. This article examines palliative care and end of life care services for patients with heart failure. It presents the case for service development and examines the benefits for patients who traditionally may not have had access to this care.

Author Louise A Charnock Palliative clinical nurse specialist, Southport and Ormskirk Hospital NHS Trust, Southport. Correspondence to: [email protected]

Keywords End of life care, chronic heart failure, heart failure, Liverpool Care Pathway, One Chance to Get it Right, palliative care, symptom management

Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.

HEART FAILURE is a financial, social, psychological and physical burden for patients and the NHS (Nicholson 2007). Its prevalence and incidence have increased within the UK and worldwide (NHS Information Centre for Health and Social Care 2009, British Heart Foundation (BHF) 2010, Connolly et al 2010). National and international studies report broadly similar mortality statistics (Ho et al 1993, Cowie et al 2000, McMurray and Simon 2000). However, worldwide studies are not directly comparable with UK studies because of different local risk factors that affect heart failure, such as social class, poverty, ethnicity and availability of health services (Health Development Agency 2000, Sosin et al 2004, Jones and Pierce-Hayes 2009, Calvillo-King et al 2013). Despite medical advancements, heart failure has an overall population prevalence of 1-3%, increasing to 10% in the very old (Knott 2012). The incidence and prevalence increase over the age of 75, reaching to 43.5 and 190 respectively per 1,000 population (Knott 2012). This is perhaps related to improved survival rates after myocardial infarction and an ageing population (Office for National Statistics (ONS) 2013). It is diagnosed mostly in older people with several comorbidities and is associated with multiple hospital admissions (BHF 2002, 2010, Lang and Mancini 2007, Connolly et al 2010). Lifestyle factors such as smoking, diet and exercise, hypertension, previous myocardial infarction and valvular disease are also risk factors (Lee et al 2009, Bostock 2011, Calvillo-King et al 2013).

Online For related articles visit the archive and search using the keywords above. Guidelines on writing for publication are available at:

Heart failure and palliative care at the end of life Heart failure can be difficult to define in practice. Patients’ and families’ perspectives of heart failure

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Art & science palliative care can vary, and the seriousness of the condition is not always recognised. This may be because in comparison with previous recovery from an acute life-threatening event, such as a myocardial infarction, heart failure may not seem as serious (BHF 2010). Patients may not understand fully the importance of symptom management, lifestyle changes and pharmacology. The National Institute for Health and Care Excellence (NICE) (2010) defines heart failure as: ‘A complex syndrome of symptoms and signs. Untreated, it has a poor prognosis but this can be improved considerably with early and optimal treatment’. This statement demonstrates the importance of healthcare professionals identifying, screening and treating patients with heart failure, from diagnosis to death. The complexity of heart failure necessitates a multidisciplinary team approach to improving patient care. This should include integrating palliative care along the heart failure disease trajectory, a journey that is often unpredictable and subject to lifestyle and medication-related variables (NICE 2010, Johnson et al 2011). Palliative care has been defined by the World Health Organization (WHO) (2011) as: ‘An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’. Generalist palliative care can be provided by healthcare professionals in any care setting as part of standard clinical practice for anyone with a life-limiting illness. It involves providing symptom management and pyschosocial support for patients and families. Specialist palliative care is delivered in support of generalist healthcare professionals. It reflects a high level of expertise in complex symptom management, holistic assessment and spiritual and psychological support. This is underpinned by specific specialist training and education in palliative care. Such specialist palliative care provision involves hospice care, clinical nurse specialists and day therapy for non-medical interventions. When complex symptoms do not respond to basic symptom management, referral to specialist palliative care is required to maintain optimum care for patients and families. Generalist and specialist palliative health professionals should coexist to support each other in delivering high quality care (Quill and Abernethy 2013). Assessment of the need for palliative care is the first step towards providing support and

symptom management at the end of life. The decision to refer a patient to specialist palliative care depends on the healthcare professional’s clinical judgement, the complexity of the intervention required and the patient’s response to treatment and his or her individual wishes. Discussions with patients about the role and function of specialist palliative care services, clear referral criteria and use of co-ordination tools such as the Gold Standards Framework (GSF) are crucial to ensure informed decision making. Patients should be given the opportunity to define their preferred place of care and advance care plans. They should also be able to decline palliative care services (Department of Health (DH) 2008). The need for palliative care should form part of the assessment of all patients, regardless of diagnosis, prognosis or demographic profile (Addlington-Hall 1998). Credible and persistent evidence has previously shown that patients with life-threatening non-malignant diseases have unmet needs, for example in relation to symptom management or psychological support (Franks et al 2000, Coventry et al 2005). However, the National Council for Palliative Care (2012) reports that the number of patients with end-stage progressive non-malignant diseases being referred to specialist palliative care services is increasing. This suggests that there is a raised awareness of the need for specialist palliative care for nonmalignant diseases. The importance of palliative care for patients with advanced heart failure and their families is widely documented (Coventry et al 2005, Connolly et al 2010, NICE 2010, Gadoud et al 2013). The evidence suggests a poor prognosis (30-40% mortality) for patients within the first year of diagnosis, but thereafter the mortality is under 10% per year (Cowie et al 2000, Hobbs et al 2007, NICE 2010). The overall prognosis for patients with heart failure has improved in the last ten years (Mehta et al 2009). However, the risk of morbidity is common and arguably has a greater effect on quality of life than many cancers (Nicholson 2007, Connolly et al 2010, Gadoud et al 2013). Patients with heart failure experience an inequitable service (Harrison et al 2012). The NHS Information Centre for Health and Social Care (2009) reported that only 6% of those dying from heart failure were referred to specialist palliative care services. This statistic implies that patients with heart failure receive reduced quality and inequitable services in end of life care (Adler et al 2009). Guidance from the Cheshire and Merseyside Cardiac and Stroke Networks (2009) suggests referral of appropriate patients who would benefit from specialist palliative care,

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patients and families with complex needs that require specialist assessment, and/or those with disease staged at New York Heart Association (NYHA) classes III or IV. This guidance may cause healthcare professionals to delay referral until patients approach the end of life, which in turn may compromise the development of professional relationships and result in patients and families receiving insufficient input from palliative care teams. However, the phrase ‘appropriate patients who would benefit from specialist palliative care’ is open to subjective interpretation by healthcare professionals.

Barriers to specialist palliative care referrals Clinical deterioration and death may occur at any time for people with heart failure (Connolly et al 2010). Unless a plan of care and the patients’ wishes are documented, care may become disorganised and inappropriate. Given the importance of end of life care for a condition known to have a poor prognosis, particularly in the first year following diagnosis, the barriers to referral to specialist palliative care services require further consideration. Barriers to referral include resource shortages leading to service dilution, traditional views that the service is only for patients diagnosed with cancer, lack of education regarding the role of palliative care services and care that is based on the medical model of ‘prevention of death’ (Coventry et al 2005, Gadoud et al 2013). Because of the disease trajectory and variable prognosis of heart failure, accurate identification of when a patient is approaching the end of life is a major difficulty for healthcare professionals (Adler et al 2009, Connolly et al 2010, Barclay et al 2011). Unlike many cancers, in which the disease trajectory is characterised by a linear decline in performance status during the last months of life, heart failure is complicated by unpredictable compensations with varying levels of improvement, and a more subtle decline over the same time period (Teno et al 2001, Davis et al 2005, Hauptman and Havranek 2005, Connolly et al 2010). There are no guidelines to suggest when to refer patients with heart failure to palliative care services, and such referral often depends on clinical judgement and experience.

Prognostic tools in end of life care It has been suggested that prognostic tools and models to help healthcare professionals identify patients with heart failure who are appropriate for

palliative care referral may help to increase referral rates (Fox et al 1999, Lee et al 2003, Huynh et al 2008). However, Coventry et al (2005) suggests that to attempt to predict appropriateness for referral is at best impractical and at worst unrealistic. The attempt to reduce the complexities of end-stage heart failure management to a blunt screening tool risks patients being overlooked. Prognostic tools should never carry more weight than the clinical demands of the patient (Coventry et al 2005). There are a plethora of tools available for prognostication in heart failure, but most do not have published data supporting their accuracy or generalisability. None have been validated for use in a UK setting (Lee et al 2003, Altman et al 2009, Boyd et al 2009, Haga et al 2012, Gadoud et al 2013). These tools can quickly date as new treatments and interventions become available. Thomas (2011) recognised the limitations of prognostication tools and suggested that, rather than trying to define timescales and exact prognostication, predicting the needs of patients with heart failure patients would result in improved co-ordination of high-quality care. This argument forms the rationale for the GSF, which is an enabling tool to support healthcare professionals in the recognition of patients with heart failure who are potentially within the last year of life. It asks this question of healthcare professionals: ‘Would you be surprised if this patient died within the next 12 months?’ (Thomas and Noble 2007). The use of the GSF is intended to ensure patients get the right care, at the right time, in the right place, by the right healthcare professional. The tool is well integrated into primary care, where GPs maintain the GSF register, and is now being implemented in secondary care, depending on regional settings. Being able to identify patients who are GSF-registered as they move between healthcare settings would help to bridge practice gaps in cross-boundary working and ensure that services follow GSF-registered patients as they move through the various healthcare settings.

Liverpool Care Pathway One tool that was widely used to support healthcare professionals in identifying heart failure patients approaching the end of life was the Liverpool Care Pathway (LCP). The LCP aimed to ensure standardisation in care, irrespective of diagnosis, and to provide excellence in care to patients across all healthcare settings, including hospital and home. It was an attempt, supported by government policy, to use an end of life pathway to reflect compassion,

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Art & science palliative care dignity, communication and symptom management, and was pivotal to improving care (DH 2008, Spence 2012, NHS England 2013). In 2012 the LCP became the subject of intense public debate. Claims that patients, particularly those with non-malignant disease, had been therapeutically abandoned were countered by accusations of press sensationalism and of an orchestrated campaign that set out ‘to bring down the LCP’ (Neuberger et al 2013). This led to fear, anger, guilt and suspicion in patients and families (Seymour and Horne 2013, Watts 2013). An independent review advised that the LCP should be phased out completely within 6-12 months, arguing that, following the negative media attention, the LCP had become too controversial to use in end of life care. Organisations have been advised to replace the LCP with individualised care plans for end of life care (Neuberger et al 2013). How these plans should be standardised and made evidence-based was not stated. The document One Chance to Get it Right (Leadership Alliance for the Care of Dying People 2014) sets out the priorities for patients, families and healthcare professionals in end of life care, in response to the issues surrounding the LCP. It acknowledges the principles on which the LCP was based but recommends more individualised, compassionate care that is underpinned by the preferences and wishes of the dying person and those identified as important to him or her. Pivotal to this approach is effective communication with patients and family members and the recognition that the patient is in the last days to hours of life. Individual care plans should address the holistic needs and wishes of patients at this time. This will be achieved through advanced communication skills, training, education, experience and access to specialist palliative care services that allow for a timely response to care needs. It is well documented that several issues contribute to unsatisfactory care at the end of life, including poor communication skills, inadequate staffing levels that increase pressure and stress, and a lack of guidance on palliative care from professional bodies (Hawkes 2013, Seymour and Horne 2013, Senior-Smith and Reid 2013, Watts 2013). There is a need within the NHS for increased education of doctors and nurses in end of life care and the ability to recognise when patients are ‘thought likely to be dying’. A shift in culture is required to move away from death and dying being a ‘taboo’ subject to a topic that can be discussed openly to ensure patients’ wishes and expectations are known. Further research is required on the effect of pathways of care – which are used throughout the

NHS, particularly with regards to nutrition and hydration at end of life – for patients with heart failure. One cause for concern is the difficulty that the implementation of individualised care plans within the next 6-12 months will bring. Organisations within the health service do not respond well to major changes, and the withdrawal of the LCP may leave a vacuum (Seymour and Horne 2013). With no clear framework on how individualised care plans will support patients who are dying, end of life care might regress to interventions with minimal uniformity or evidence base. Inappropriate interventions, including resuscitation, may occur, or adherence to the medical model of treating to cure without recognition that death is an integral part of living may become prevalent (Spence 2012, Watts 2013). The LCP did not inform treatment or management plans, which remain the responsibility of the hospital consultant or GP. It provided a framework for excellence in practice that prompted healthcare professionals to deliver holistic care at the end of life (Sleeman and Collis 2013). Rather than complete discontinuation of the LCP, its values, aims and objectives could have been used to contribute to the framework of new individualised care plans. This was acknowledged within the independent review, which stressed that the principles of good palliative care on which the LCP was based must be upheld, whether or not the LCP is in use (Neuberger et al 2013). The essential underpinning factor of end of life care should be compassionate, individualised, high-quality, evidence-based care. Compassionate care must be upheld at all times. Public confidence in healthcare professionals and end of life policies is essential for service development. Care must be taken to instil confidence surrounding decision making in end of life care, ensuring that policies and guidelines are evidence-based and transparent, and encourage a culture of honest, open communication. It is anticipated that guidance in the One Chance to Get it Right document (Leadership Alliance for the Care of Dying People 2014) will address these issues. However, much work is needed by healthcare professionals to ensure effective execution of this – for example, in terms of developing a framework for an individualised care plan for those thought likely to be dying, and increased education and implementation of advance care planning.

Difficult decisions at the end of life One decision patients with heart failure, their families and healthcare professionals find difficult to make, and often comprehend, is the withdrawal

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of life-extending drugs, which should occur only when the end of life is imminent. Patients with heart failure may have been ‘reliant’ on the medication for several years, and withdrawal may cause much anxiety. Effective communication and simple explanations that detail the benefits and burdens of all the patient’s options are required. The first drugs to be discontinued when patients become fatigued and their oral intake decreases in the final weeks of life should be those that are not used to treat symptoms. Patients may perceive stopping these medications as a sign that healthcare professionals are ‘giving up’ and accepting death. This can have a profound psychological effect on patients and exacerbate symptoms of breathlessness and weakness (Abel 2013). It is vital that patients and families are informed that withdrawal of familiar medications will not affect symptom management, and that these medications may become more of a burden then a benefit to a patient thought likely to be dying. This will help to ensure the patient’s comfort and dignity are maintained when death is imminent. Effective communication and advance care planning can also help to reduce the stress and burden of acceptance associated of these decisions (Abel 2013). One recommendation within the LCP was that unnecessary medications should be discontinued and that anticipatory prescribing should be in place for symptom management. This again is an important issue that should be addressed with patients with heart failure at the end of life. Given the demise of the LCP, it can only be hoped that these conversations will take place without the prompts previously provided in the LCP documentation.

Service development and delivery The NHS functions in an environment of increasing demand and finite resources (DH 2000, 2008, Connolly et al 2010, NICE 2010). It is paramount that policy and service delivery are evidence-based, patient-focused and appropriately resourced. Patients with heart failure may have many healthcare professionals with ‘overlapping’ roles involved in their care. At any one time, there can be a community matron, heart failure specialist nurse, palliative care specialist nurse and district nurse visiting the same patient. Multidisciplinary team working with effective communication to understand others’ roles and who is the most appropriate healthcare professional to deliver care at any particular time is imperative. Within limited budgets, healthcare professionals should work in an integrated and flexible manner across professional boundaries to reduce duplication and ensure resources are used costeffectively (Stewart 2010, Wee and Gomm 2013).

The National Service Framework for Coronary Heart Disease (DH 2000) provided healthcare professionals with a framework to develop their heart failure services. It included the introduction of the community matron role to reduce emergency hospital admissions and support patients living with chronic conditions (DH 2005). The models used for community matron services vary greatly between areas and it is not possible to standardise one policy in relation to patients with heart failure and community matrons. Andrews and Seymour (2011) and Nicholson (2007) argue that the community matron’s role, while working at an advanced clinical level, does not demand the high standard and knowledge of specialist skills required to deal with the complexity of heart failure. Since they have a generic role, community matrons cannot achieve specialist skills in all chronic diseases and end of life care. It would not be unreasonable for matrons to seek specialist advice in areas such as heart failure or palliative care. It might be beneficial to patients if community matrons were the patient’s first point of contact and had responsibility for working to treatment pathways, co-ordination of care and prevention of hospital admission. Nicholson (2007) suggested that community matrons should use palliative care services when patients’ needs become more complex than a generalist nurse can provide. This would release heart failure specialist nurses to become involved actively with treatment optimisation for patients responding to treatment, and allow them to develop screening services for possible prevention of symptoms and disease. This in turn would benefit public health, since working with patients in the early stages of disease often has the biggest effect (Stewart 2010). One approach could be that, as a patient moves along the disease trajectory and his or her response to treatment decreases, the heart failure specialist nurse would gradually reduce his or her contribution to the care of the patient. The palliative care specialist nurse would then become more active in his or her role, with continuity of care provided by the community matron.

Conclusion Consideration of the need for palliative care is imperative for patients with heart failure. The end of life is a highly emotive time for patients and families. It is vital that generalist practitioners assess patient and family needs holistically and where complex interventions are required refer patients to specialist palliative care services. By implementing a palliative care approach at a generalist level, with specialist palliative care for support, healthcare

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Art & science palliative care professionals can ensure adequate pain and symptom management, avoidance of inappropriate hospital admission and psychosocial support of families and patients in achieving preferred place of care. Part of the specialist palliative care role should include essential training and education for all generalist practitioners. Pivotal to the assessment of patients with heart failure is advanced communication skills, supported by the use of end of life care co-ordination, such as an individualised plan of care for those thought likely to be dying, and anticipatory prescribing. Multidisciplinary working is essential, with health specialists and community matrons acknowledging their strengths and communicating with healthcare professionals in other practice areas to ensure patients receive a high level of quality care. Emphasis needs to be on person-centred care to ensure patients are being referred to and supported by specialist palliative care services in relation to need, and not disease. Research and evidence-based findings are required to deliver excellence in end of life care. Individualised care plans should be developed to ensure patients and their families, in the final days to hours, are supported with

compassionate and highly skilled professional care in an environment that encompasses open communication and evidence-based care. As a profession, and a specialty, palliative care should aim to provide an equitable service based on patient need and not diagnosis or service provision. The One Chance to Get it Right document (Leadership Alliance for the Care of Dying People 2014) recognises that many healthcare professionals are already implementing care based on the priorities recommended in the report. The move away from a standardised pathway towards the development of end of life care plans to local areas is now high on the political agenda. How the priorities will be delivered in practice remains to be seen. It is expected that NICE will publish new clinical guidelines on the care of dying adults in 2015. Until then, health professionals will continue to strive to deliver compassionate, individualised care for patients and their families at the end of life NS Acknowledgement This article was written as part of an online MSc Advanced Cardiac Care Module at Edge Hill University, Ormskirk, Lancashire.

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End of life care services for patients with heart failure.

Heart failure has high incidence and prevalence in the UK. However, access to palliative care services for patients with heart failure is inequitable...
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