End of life care for patients following acute stroke

End of life care for patients following acute stroke Cowey E (2012) End of life care for patients following acute stroke. Nursing Standard. 26, 27, 42-46. Date of acceptance: May 19 2011. Abstract End of life care is an important aspect of acute stroke nursing because stroke mortality rates remain high, despite advances in care. There is a national drive to improve the quality of end of life care in all clinical areas, including for stroke patients. Patients who have had a stroke should not be excluded from acute stroke care at the end of life. Stroke care should incorporate multidisciplinary working, anticipatory care planning and prescribing, and effective communication with patients and families. The use of end of life care pathways is widely recommended as best practice. Palliative care specialists may provide support where patients needs are complex, while decisions to withhold cardiopulmonary resuscitation should be avoided immediately following stroke. Spiritual care extends beyond religious care and is the responsibility of the multidisciplinary team. Although more research is required about stroke care at the end of life, providing high-quality, patient-centred services for patients who have had a stroke and their families during this time is achievable. Author Eileen Cowey Research assistant, Nursing and Health Care School, University of Glasgow. Correspondence to: eileen.cowey@glasgow.ac.uk Keywords Acute stroke, end of life care, palliative care, spiritual care, stroke unit Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software. Online Guidelines on writing for publication are available at www.nursing-standard.co.uk. For related articles visit the archive and search using the keywords above. STROKE CAN BE A catastrophic event that often occurs unexpectedly and carries a significant risk of death or long-term disability. In England, there are approximately 110,000 strokes annually and around one in four people who have had a stroke will die as a result of it (National Audit Office and Department of Health (DH) 2010). One study found that more than two thirds of patients who died after a stroke did so within 30 days, and more than 90% of deaths occurred during the initial hospital admission period (Goldacre et al 2004). In Scotland, 19% of people admitted to hospital with a stroke in 2008 died within 30 days (Information Services Division Scotland 2009). End of life care has been designated as a priority for the NHS in England (DH 2008), Wales (All Wales Palliative Care Planning Group 2008), Northern Ireland (Department of Health, Social Services and Public Safety 2010) and Scotland (Scottish Government 2008). A national audit in England, concluded that more than half of all deaths occur in hospital and that communication, spiritual and religious care, and support of families and carers are all areas for improvement, both before and after death (Marie Curie Palliative Care Institute Liverpool and Royal College of Physicians 2009). This article aims to identify some principles of best practice for nurses providing end of life care for patients following stroke. End of life care in stroke units Palliative care is an all-encompassing approach to care that begins months or years before death (World Health Organization 2002). By contrast, end of life care is defined as a component of palliative care that is provided in the last hours or days of life (NHS Quality Improvement Scotland (NHSQIS) End of life care is particularly relevant in acute stroke nursing because of the sudden onset of stroke and its high mortality rate. However, for the same reasons the opportunity to provide this type of care may be limited. 42 march 7 :: vol 26 no 27 :: 2012 NURSING STANDARD / RCN PUBLISHING

Provision of end of life care is a marker of a quality service, and such care should be delivered in line with best practice guidance by a workforce with appropriate skills and experience (DH 2007, Scottish Government 2009a). However, an audit of stroke care in England found that over 10% of stroke units providing care beyond 72 hours following stroke excluded patients on the basis of no rehabilitation potential (Intercollegiate Stroke Working Party (ISWP) 2010). The audit recommended that patients requiring end of life care should be able to receive such care to a high standard on a stroke unit. Providing end of life care in a stroke unit ensures the specialist input necessary for accurate stroke diagnosis and prognosis, both of which are key to making decisions about end of life care following acute stroke (ISWP 2010). Evidence base for end of life care following acute stroke There is a lack of evidence to guide care at the end of life following acute stroke. For example, a Cochrane review found that there were insufficient high-quality studies to make any recommendations for use of end of life care pathways in general (Chan and Webster 2010). However, the use of such care pathways is widely accepted as best practice (DH 2007, All Wales Palliative Care Planning Group 2008, Scottish Government 2008, Department of Health, Social Services and Public Safety 2010). The Liverpool Care Pathway, or equivalent, has been recommended as a marker of quality in the provision of care in the last hours or days of life (DH 2007). There is evidence of difficulties in diagnosing dying in patients (Higgs 1999). In the case of stroke, prognostic indicators of mortality such as age and pre-stroke function are well documented. However, while these are useful for clinical trials, they are not specific enough for use with individual patients (Lewis et al 2008). Furthermore, there is evidence that in acute hospitals the diagnosis of dying in any patient, including those with stroke, usually occurs close to death: within 72 hours of death for 87% of patients and within 24 hours of death for 50% of patients (Gibbins et al 2009). It is not known whether late diagnosis of dying has an effect on the use of end of life care pathways. Best practice in end of life care A best practice statement on end of life care following acute stroke has been published in Scotland (NHSQIS and University of Glasgow 2010). This statement was the culmination of a nine-month project in which various healthcare professionals (nurses, doctors and allied health professionals) collaborated to review and agree best practice to help guide nursing care for patients with acute stroke at the end of life. The following sections are based on the main components of the best practice statement. Role of the multidisciplinary team Team working is a key feature of high-quality end of life stroke care. The focus of care moves from rehabilitation to symptom control, ensuring patient comfort and support for families and carers. Nurses should work closely with staff in other disciplines to provide high-quality end of life care and contribute to decision making within a multidisciplinary context (NHSQIS Role of specialist palliative care services Nurses caring for patients who have had a stroke require stroke-specific training (DH 2010). However, end of life care is often provided by staff who are not specialists in palliative care (Audit Scotland 2008). This applies to many stroke nurses who may require additional education and support to improve stroke-specific skills. For example, patients who have had a stroke may have communication difficulties and nurses will need to be trained to communicate effectively with these individuals (Young et al 2009). Communication with families and carers may clarify the priorities and wishes that the patient may have voiced in the past but can no longer express (Young et al 2009). In addition to nursing staff, palliative care specialists should be available to support patients with complex end of life care needs (Audit Scotland 2008). This might be particularly relevant to stroke care in the case of difficult decision making about management of nutrition or hydration, or complex symptoms, for example (Stevens et al 2007, ISWP 2008, Holloway et al 2010, Mazzocato et al 2010). Symptom management Common symptoms following stroke include dyspnoea, pain, dryness of the mouth, constipation and anxiety (Mazzocato et al 2010). Management of these symptoms is often complicated by the presence of dysphagia or communication problems (Chahine et al 2008). It is important that symptoms are identified early, managed effectively and assessed regularly (NHSQIS NURSING STANDARD / RCN PUBLISHING march 7 :: vol 26 no 27 :: 2012 43

Where possible, the use of anticipatory care planning should be considered (DH 2007), including anticipatory prescribing of medicines (Scottish Government 2008). Such proactive planning improves continuity of care and quality of life for patients and their families (Scottish Government 2008, Department of Health, Social Services and Public Safety 2010). As far as possible, care planning should accommodate patients end of life preferences and priorities (NHSQIS It is important that care is documented accurately and that any documentation, including an anticipatory care plan, is shared with relevant healthcare professionals and services at transition points of care. This may include transfer of the patient to a care home or to his or her own home for continued end of life care. Nutrition and hydration Dysphagia is a common complication following stroke and is associated with increased mortality (Scottish Intercollegiate Guidelines Network 2010). Nurses have an important role in early identification of swallowing difficulties through nutritional and swallow screening and in working with speech and language therapists to manage dysphagia (NHSQIS and University of Glasgow 2010). Nurses also have a role in providing oral fluids and nutrition, which is integral to core or fundamental care and is not to be withdrawn unless the patient refuses or is unable to participate (NHSQIS and University of Glasgow 2010). In contrast, providing clinically assisted nutrition and hydration is considered by law to constitute medical treatment and can be withheld or withdrawn if it is considered not to be in the patient s best interest (General Medical Council (GMC) 2010, Royal College of Physicians and British Society of Gastroenterology 2010). Clinically assisted nutrition and hydration, as defined by the GMC (2010), includes intravenous feeding, and feeding by nasogastric tube and by percutaneous endoscopic gastrostomy and radiologically inserted gastrostomy feeding tubes through the abdominal wall... clinically assisted hydration can also be provided by intravenous or subcutaneous infusion of fluids through a drip. The terms clinically assisted nutrition and clinically assisted hydration do not refer to help given to patients to eat or drink, for example by spoon feeding. It is best practice to instigate time-limited trials of clinically assisted feeding when there is lack of agreement about the benefits of supporting nutrition or hydration in a particular patient (NHSQIS Decision making and ethical aspects of care Rogers and Addington-Hall (2005) found that clinical decision making could be complex and challenging in the care of patients surviving for more than five days following severe stroke. Wherever possible, the needs and preferences of patients should be considered when planning care. Patients and their families or carers should participate in making decisions about treatment if possible (NHSQIS and University of Glasgow 2010). The primary role of families and carers is to clarify the views held by the patient before the stroke and express these if the patient is unable to do so, for example because of cognitive or communication difficulties (Scottish Government 2010). Advance care directives should be recognised in any decision making (NHSQIS Decisions to withhold cardiopulmonary resuscitation (CPR) should be avoided in the immediate period following stroke (NHSQIS and University of Glasgow 2010). Some studies have shown that patients with stroke for whom an early decision was made not to resuscitate were more likely to die than patients with stroke of a similar severity for whom no such decision was made (Mohammed et al 2006, Zahuranec et al 2007). The ISWP (2010) also recommended avoiding early decisions about prognosis in relation to excluding patients from stroke unit care, stating that such early decisions about prognosis often become self fulfilling prophecies. It is impossible to judge whether a patient has rehabilitation potential at such an early stage and policies to exclude stroke patients from a stroke unit are indefensible. Decisions to withhold CPR should be individualised, involve full and accurately documented discussion with patients and their families or carers (NHSQIS and University of Glasgow 2010) and be made in line with relevant CPR policy. One example of a relevant policy is the national Do Not Attempt CPR (Scottish Government 2010). This policy recognises that, in certain circumstances, the responsibility for making advance decisions about CPR may lie with senior nurses. All involved in such decisions, whether staff, patients or families, should understand that other treatments or quality of care will not be compromised by an agreed decision to withhold CPR (NHSQIS Where patients are able to give informed consent, their wishes should be respected (NHSQIS It is important to assume that patients have capacity to consent unless incapacity is demonstrated (Royal College of Physicians and British Society 44 march 7 :: vol 26 no 27 :: 2012 NURSING STANDARD / RCN PUBLISHING

of Gastroenterology 2010). Where a patient is unable to consent and has no legally appointed representative, the clinician in charge of the individual s care will make a decision in consultation with the multidisciplinary team and the patient s family or carers. The aim should be to act in the patient s best interests (Scottish Parliament 2000, Stroud et al 2003). It is crucial that any decisions regarding treatment or care are subject to ongoing review (NHSQIS and University of Glasgow 2010). Spiritual and religious care Spiritual care is an integral component of holistic care (DH 2003, NHS Education for Scotland 2009). Spiritual care is a concept that extends beyond religious care. For example, a Royal College of Nursing (RCN) (2010) survey of 4,045 UK nurses found that they believed showing respect for privacy, dignity, and religious and cultural beliefs helped to meet the spiritual needs of patients. Behaving with kindness, concern and cheerfulness and spending time with patients was also seen as giving spiritual care. The nurses surveyed believed that atheists and agnostics also require spiritual care and that spirituality involved more than attending worship (RCN 2010). The RCN chief executive, Peter Carter, summarised the issue by stating that this is not about harking back to an age of daily prayers on wards instead it is about personalised care and giving nurses guidance and time to get to know their patients as people rather than just their medical conditions (RCN 2010). The multidisciplinary team has a responsibility to provide spiritual care to patients and their families (RCN 2010). This requires that staff are familiar with different spiritual and religious beliefs and practices and their relationship with health. Staff should also demonstrate a willingness to discuss spiritual needs with patients and families and ensure there is access to spiritual care resources and information, for example chaplaincy services (NHSQIS and University of Glasgow 2010). References All Wales Palliative Care Planning Group (2008) Palliative Care Planning Group Wales: Report to the Minister for Health and Social Services. http://tinyurl.com/7fne79y Audit Scotland (2008) Review of Palliative Care Services in Scotland. http://tinyurl.com/ybbj95j (Last accessed: Chahine LM, Malik B, Davis M (2008) Palliative care needs of patients with neurologic or neurosurgical conditions. European Journal of Neurology. 15, 12, 1265-1272. Chan R, Webster J (2010) End-of-life care pathways for improving outcomes in caring for the dying (review). Cochrane Database of Systematic Reviews. Issue 1. doi 10.1002/14651858.CD008006.pub2. 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Clinical Medicine. 9, 2, 116-119. Goldacre MJ, Roberts SE, Griffith M (2004) Place, time and certified cause of death in people who die after hospital admission for myocardial infarction or stroke. European Journal of Public Health. 14, 4, 338-342. Higgs R (1999) The diagnosis of dying. Journal of the Royal College of Physicians of London. 33, 2, 110-112. Holloway RG, Ladwig S, Robb J, Kelly A, Nielsen E, Quill TE (2010) Palliative care consultations in hospitalized stroke patients. Journal of Palliative Medicine. 13, 4, 407-412. Information Services Division Scotland (2009) Scottish Clinical Indicators on the Web. Stroke: Survival for 30 Days after Emergency Admission. http://tinyurl.com/7ss8m78 Intercollegiate Stroke Working Party (2008) National Clinical Guideline for Stroke. Third edition. Royal College of Physicians, London. Intercollegiate Stroke Working Party (2010) National Sentinel Stroke Audit Organisational Audit 2010: Public Report For England, Wales and Northern Ireland. http://tinyurl.com/85pxcdd Lewis S, Sandercock P, Dennis M (2008) Predicting outcome in hyper-acute stroke: validation of a prognostic model in the Third International Stroke Trial (IST3). Journal of Neurology, Neurosurgery and Psychiatry. 79, 4, 397-400. Marie Curie Palliative Care Institute Liverpool, Royal College of Physicians (2009) National Care of the Dying Audit Hospitals. Round 2. Generic Report 2008/2009. http://tinyurl.com/7evdzpw Mazzocato C, Michel-Nemitz J, Anwar D, Michel P (2010) The last days of dying stroke patients referred to a palliative care consult team in an acute hospital. European Journal of Neurology. 17, 1, 73-77. NURSING STANDARD / RCN PUBLISHING march 7 :: vol 26 no 27 :: 2012 45

Supporting families and carers Patients and their families or carers require information and practical support as part of end of life care. The importance of effective communication and sharing of information have been highlighted repeatedly (Young et al 2009, Payne et al 2010). Information should be shared sensitively and tactfully in a way that the patient or family can understand (GMC 2010). A quiet private space should be available for staff to speak to patients and their families or carers (NHSQIS and University of Glasgow 2010). Early bereavement care should be provided by stroke unit staff. This may include ensuring that nurses are available to families and carers, involving other members of the multidisciplinary team such as chaplains and giving practical information about next steps if necessary. Such information could be verbal or written (Scottish Government 2009b). Conclusion Although there are gaps in the evidence base underpinning stroke care at the end of life, principles of good practice relating to end of life care following acute stroke have been identified. Adherence to these principles will result in the provision of a high-quality, patient-centred service for patients who have had a stroke and their families. However, more research is required and this has prompted a funded study to examine the effect of end of life care pathways following acute stroke. Information about this study can be found at http://tinyurl.com/7w54ubj NS Mohammed MA, Mant J, Bentham L, Stevens A, Hussain S (2006) Process of care and mortality of stroke patients with and without a do not resuscitate order in the West Midlands, UK. International Journal for Quality in Health Care. 18, 2, 102-106. National Audit Office, Department of Health (2010) Progress in Improving Stroke Care. www.nao.org.uk/stroke2010 NHS Education for Scotland (2009) Spiritual Care Matters: An Introductory Resource for All NHS Scotland Staff. http://tinyurl.com/6ujqyqw NHS Quality Improvement Scotland, University of Glasgow (2010) Best Practice Statement: End of Life Care following Acute Stroke. www.gla.ac.uk/media/media_ 181950_en.pdf (Last accessed: Payne S, Burton C, Addington-Hall J, Jones A (2010) End-of-life issues in acute stroke care: a qualitative study of the experiences and preferences of patients and families. Palliative Medicine. 24, 2, 146-153. Rogers A, Addington-Hall J (2005) Care of the dying stroke patient in the acute setting. Journal of Research in Nursing. 10, 2, 153-167. Royal College of Nursing (2010) Patients Missing out on Spiritual Care, say Nurses. http://tinyurl.com/ 7qxhauz (Last accessed: Royal College of Physicians and British Society of Gastroenterology (2010) Oral Feeding Difficulties and Dilemmas: A Guide to Practical Care, Particularly Towards the End of Life. Report of A Working Party. http://tinyurl.com/6ssc9qv (Last accessed: Scottish Government (2008) Living and Dying Well: A National Action Plan for Palliative and End of Life Care in Scotland. http://tinyurl.com/yf5glpo Scottish Government (2009a) Better Heart Disease and Stroke Care Action Plan. http://tinyurl.com/ 8yjvhhf (Last accessed: February 9 2012.) Scottish Government (2009b) What to do after A Death in Scotland. http://tinyurl.com/ 2725pz9 (Last accessed: February 9 2012.) Scottish Government (2010) Do Not Attempt Cardiopulmonary Resuscitation (DNACPR): Integrated Adult Policy. http://tinyurl.com/ 7xn7rwc (Last accessed: Scottish Intercollegiate Guidelines Network (2010) Management of Patients with Stroke: Identification and Management of Dysphagia. www.sign.ac.uk/ pdf/sign119.pdf (Last accessed: Scottish Parliament (2000) Adults with Incapacity (Scotland) Act 2000. http://tinyurl.com/87yy89a Stevens T, Payne SA, Burton C, Addington-Hall J, Jones A (2007) Palliative care in stroke: a critical review of the literature. Palliative Medicine. 21, 4, 323-331. Stroud M, Duncan H, Nightingale J (2003) Guidelines for enteral feeding in adult hospital patients. Gut. 52, Suppl 7, vii1-vii12. World Health Organization (2002) National Cancer Control Programmes: Policies and Managerial Guidelines. Second edition. http://tinyurl.com/6s2ept4 Young AJ, Rogers A, Dent L, Addington-Hall JM (2009) Experiences of hospital care reported by bereaved relatives of patients after a stroke: a retrospective survey using the VOICES questionnaire. Journal of Advanced Nursing. 65, 10, 2161-2174. Zahuranec DB, Brown DL, Lisabeth LD et al (2007) Early care limitations independently predict mortality after intracerebral hemorrhage. Neurology. 68, 20, 1651-1657. 46 march 7 :: vol 26 no 27 :: 2012 NURSING STANDARD / RCN PUBLISHING