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Optimising palliative and end of life care in hospital

NS647 Milligan S (2012) Optimising palliative and end of life care in hospital. Nursing Standard. 26, 41, 48-56. Date of acceptance: March 29 2012.

Abstract
The acute hospital setting is increasingly regarded as an important area for the delivery of palliative care. A significant number of patients with advanced, life-limiting illness have a range of palliative care needs, some of which can be met by ward staff, but others may require additional, specialist input. Several factors have the potential to limit the palliative care patients in hospital receive, not least of these being disagreement about when and how the transition to palliative care should take place. In practice, however, palliative care can readily be delivered in conjunction with active disease management.

Aims and intended learning outcomes

This article aims to explore the need for palliative care in the hospital setting and the ways in which that need can be met. It examines factors that may interfere with the provision of palliative care. After reading this article and completing the time out activities you should be able to:  Discuss the importance of delivering palliative care in the hospital setting.  List the different models used to deliver palliative care in hospitals.  Describe how the quality of palliative care in hospital might be assessed.  Identify potential barriers to effective palliative care in hospitals.  Outline possible strategies for improving palliative care in hospitals.  Give examples of how effective palliative care can improve the quality of life of patients and families.

Author
Stuart Milligan Education facilitator, Ardgowan Hospice, Greenock, and lecturer, University of the West of Scotland, Paisley.

Keywords
Advance care planning, end of life care, hospital setting, palliative care

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

Introduction
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness (World Health Organization (WHO) 2012). It is applicable early in the course of illness, with other therapies that are intended to prolong life, but also includes care at the end of life and support for those who are bereaved. As such, palliative care may be delivered to a range of people with different conditions in various healthcare settings (Department of Health (DH) 2008, Scottish Government 2008). The hospital remains the most common place of death in the UK, with 58% of all deaths in

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England taking place in this setting (National End of Life Care Intelligence Network 2010). Furthermore, 75% of people will be admitted to hospital at least once during their last year of life (Living and Dying Well Short Life Working Group 5 2010). These statistics have significant implications for palliative care because traditionally, many specialist resources have been concentrated in hospice and community settings (Help the Hospices 2012). The long-term intentions of the national health authorities in all parts of the UK appear to be to enable more people to die in their own homes, if that is their wish (DH 2008, Scottish Government 2008). However, progress towards that end is likely to be gradual, and there is a continuing need for high quality palliative and end of life care in all hospital settings. This article will focus on the provision of palliative care in hospital, focusing mainly on the UK, but also considering examples from other countries. The need for palliative care in this setting will be assessed, and the ways in which that need is being addressed will be examined. In addition the article will consider the quality of palliative care in hospital, barriers to providing this care and some of the ways in which those barriers might be overcome.

Patients in hospital who require palliative care could have a range of specific needs, in addition to general care needs and those associated with disease management. Relief of pain and other symptoms might be expected to be among the most prevalent of these specific needs (Casarett et al 2011, Tapsfield and Bates 2011). However, less obvious needs such as advance care planning and decision making around aggressive treatments may also require attention. A summary of the palliative care needs of patients in hospital are summarised in Box 1. On the basis of the size of the palliative population in hospital and the potential needs that these patients might have, palliative care in this setting potentially constitutes a significant component of any local service provision (Cohen et al 2012). Indeed, palliative care in hospital has been identified as a priority area for future growth in the UK and other countries such as the United States, Canada and Australia (Le and Watt 2010, National End of Life

TABLE 1
Place of death in England
Care setting Hospital Own residence Care home Hospice Other Total Percentage of deaths 58 19 16 5 2 100

Palliative care in hospital

In England, approximately 58% of deaths occur in hospital, including community hospitals (National End of Life Care Intelligence Network 2010) (Table 1). Figures for other countries in the UK are broadly similar (Ahmad and OMahony 2005, Audit Scotland 2008, Health and Social Care in Northern Ireland and Department of Health, Social Services and Public Safety 2009). Of those who die in hospital, certain groups are particularly prevalent. These include older people, those in the more deprived quintiles of the population, people dying from respiratory diseases and individuals with multiple or complex care needs (National End of Life Care Intelligence Network 2010). Other groups of people who might require palliative care in hospital include those affected by one or more of a range of progressive, life-limiting diseases such as cancer and heart failure. Taking into consideration these patient groups, a picture emerges of a large and diverse population (perhaps 10% of the total hospital population), potentially with a range of palliative and end of life care needs (Desmedt et al 2011). Complete time out activity 1

(National End of Life Care Intelligence Network 2010)

1 Make a list of the possible palliative and end of life care needs that a person in hospital with an advanced, life-limiting disease might have. Include the needs of people at different points in the palliative care spectrum, from relatively early in the advanced stages of the disease, to the end of life phase.

BOX 1
Examples of palliative care needs of patients in hospital
 Assessment and management of pain and other symptoms.  Assessment and management of psychosocial and spiritual needs.  Discussion of prognosis and treatment options.  Identification of patient-centred goals of care.  Management of the transition from a primarily curative to a primarily palliative approach.  Advance care planning.  Decision making around resuscitation and other aggressive treatments.  Counselling.  Psychosocial and spiritual support for patients and carers.  Planning of transitions to another care setting.  Recognition of the signs of the end of life.  Anticipatory prescribing.  Commencement of an end of life care pathway.  Delivery of end of life care.  Support for family before, during and after death.
(Buchanan 2009, Babcock and Robinson 2011)

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Care Programme 2010, Scottish Government 2011, Voelker 2011, Cohen et al 2012). The National End of Life Care Programme (2010), in particular, has mapped out a strategy specifically to improve end of life care in hospitals. While focusing on care close to the end of life, the strategy also identifies the importance of good quality palliative care in hospital in general. One of the recurring themes in the literature on palliative care in hospital is the need for consistency of provision (Buchanan 2009, Living and Dying Well Short Life Working Group 5 2010, Cohen et al 2012). Care and support of people affected by advanced, life-limiting disease has become a major public health issue (Stjernswrd et al 2007). However, there is evidence of significant variation in provision of and access to palliative care between different care settings, geographical localities and primary diagnoses (Audit Scotland 2008, Hughes-Hallett et al 2011). This may, in part, be because of the history of palliative care, which has been characterised by ad hoc and relatively unregulated developments. This trend has been identified in hospital, with one study concluding that referral to a dedicated palliative care service depends on the coincidence of being admitted to the right hospital (Cohen et al 2012). Nevertheless recent recommendations have called for a comprehensive approach to palliative care provision in hospital, with the aim of creating services that are of consistent quality, readily accessible and provided solely on the basis of need (Living and Dying Well Short Life Working Group 5 2010). Complete time out activity 2

Nature of palliative care in hospitals

Hospitals have always provided care and support for patients who are terminally ill or dying, although this has often been against a background of conflict between the competing cultures of cure and care (Saltmarsh 2009, Kulkarni 2011). However, establishing formal palliative care services in acute hospitals is a relatively recent innovation. Balfour Mount established a ward for dying people in The Royal Victoria Hospital, Ontario, Canada in 1973 (Milligan and Potts 2009). The first service in the UK was the palliative care team introduced at St Thomas Hospital, London in 1976 (Buchanan 2009). Since then hospital teams and services have been identified across the UK, and it would be unusual to find a district general hospital without some kind of formal service. Palliative care in hospital is also becoming established around the world, both in developed and developing countries (Parish et al 2006, Kulkarni 2011, Tapsfield and Bates 2011). The typical model of palliative care provision in hospital involves one or more specialist clinicians providing advice, support or direct care. This is not to say that general palliative care does not have a role to play. Indeed, as will be discussed later, it is the blending of generalist and specialist interventions and approaches that probably holds most promise for effective palliative care provision in hospital in the future. The precise way in which specialist palliative care is delivered in hospitals varies considerably, but four main models have been identified (Table 2). The most common appears to be the palliative care consultation team or hospital palliative care team (Jack et al 2006, Sasahara et al 2010, Morrison et al 2011). These teams tend not to have dedicated palliative care beds, but instead provide a visiting, consultative service. The team may consist of any combination of specialist clinicians, including medical staff, nurses, chaplains and counsellors (Rice and Betcher 2010, Babcock and Robinson 2011). Typical reasons for referral to these teams include providing advice on symptom control, reviewing medicines and providing psychosocial support for patients and families. Some hospitals have palliative care outpatient teams that provide a similar type of care to the palliative care consultation team, but on

TABLE 2
Models for delivering specialist palliative care in acute hospitals
Model Palliative care consultation team or hospital palliative care team Palliative care outpatient service Features No dedicated ward or ward area. Patients and families seen by the team when its members visit the ward. Multidisciplinary team consists of members with additional training in palliative care. No dedicated ward or ward area. Patients and families seen by the team in the outpatient department. Multidisciplinary team consists of members with additional training in palliative care. Dedicated ward or ward area. Patients and families receive continuing care from the team. Multidisciplinary team consists of members with additional training in palliative care. Dedicated ward or ward area. Patients and families receive care from the team during time-limited admission to the ward or ward area. Multidisciplinary team consists of members with additional training in palliative care and/or oncology.

Palliative care inpatient service

Acute palliative care unit

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an outpatient basis (Ryan et al 2002). Such teams may only come together specifically to provide palliative care clinics, with the members having other roles (sometimes unconnected with the hospital palliative care service). One recent development has seen palliative medicine consultants based in hospices (but employed on NHS contracts) provide input to hospital clinics in conjunction with hospital-based staff. This integration of services has the potential to deliver better outcomes for patients by combining the expertise of clinicians from a number of sites and areas of practice. A third model, the palliative care inpatient service, is based around a dedicated palliative care ward, staffed by specialists who admit patients for symptom management, respite or continuing palliative care (Rice and Betcher 2010, Tapsfield and Bates 2011). This model is closest to the traditional hospice model, and differs from the consultation team and outpatient models in that it allows the development of long-term, supportive relationships with patients and families. However, the hospital setting is associated with several opportunities, which may not apply in the traditional hospice setting. For example, there is greater potential to incorporate investigations and interventions, where appropriate, into the unique plan of care for each patient (Kulkarni 2011). There is some evidence that this model is preferred by families (Casarett et al 2011). The fourth and least common model of palliative care provision in acute settings is the acute palliative care unit (Mercadante et al 2008, Jones et al 2010, Bryson et al 2010, Elsayem et al 2011). In this model, an area is designated within an acute oncology unit to provide palliative management of complex symptoms and side effects of treatment. Patients admitted to these units tend to have complex, advanced cancer and will generally receive palliative interventions against a background of ongoing oncology treatment. All four models enable patients and their families to access a range of palliative care interventions, support and services. The extent of involvement of specialist staff in delivering those services will depend on the model used, the need being addressed, and the relationship between the specialist team and any other teams involved in that patients care. In some situations, advice and support for generic ward staff is sufficient. In other circumstances, a comprehensive and intensive programme of specialist input may be required. A summary of the levels of input that might be negotiated

for a patient in a general or non-palliative care specialist area is provided in Box 2.

Quality of palliative care in hospital

With the proliferation of hospital palliative care services and the range of different models available, a need has been identified to evaluate hospital palliative care. Various approaches have been used and include:  Studying what hospital palliative care services do, including what services they provide and what methods they use.  Characterising the palliative care patient population in hospital, including needs and outcomes. What proportion have pain? What proportion die in hospital? And what proportion die at home?  Measuring the effects of palliative care in hospital in terms of administrative and/or financial outcomes.  Measuring the effects of hospital palliative care on wellbeing, quality of life and other patient and/or family outcomes, including symptom control. Jack et al (2006) demonstrated significant improvements in pain scores following input from a specialist palliative care team. Ryan et al (2002) demonstrated the achievement of key quality indicators, including pain controlled within 24 hours, nausea controlled within 24 hours and do not attempt cardiopulmonary resuscitation conversation had within 72 hours. Other studies have demonstrated improvements in carers satisfaction with patient outcomes (Casarett et al 2011). Several studies have demonstrated cost savings associated with the introduction of hospital palliative care (Cassel et al 2010, Penrod et al 2010, Rice and Betcher 2010). Evaluations of hospital palliative care services based on interviews with hospital staff have

2 Find out about the provision of palliative care in your local hospital. The website of the hospital or your local health authority might be a good place to start. You should try to find out what services are provided, who provides them and how they are accessed. How accessible is this information to patients and families?

BOX 2
Examples of levels of input provided by specialist palliative care services in hospital
 Single contact between specialist team members and the ward team, patient or family. For example, to review medication, advise the ward team on symptom management or discuss options for future care.  Time-limited series of contacts. For example, to assess, manage and review one or more difficult symptoms or psychosocial issues.  Regular, prolonged contact with the patient and/or family. For example, to address complex communication or information needs, or to address complex family issues, ethical decisions and spiritual needs.  Temporary or open-ended transfer to palliative care inpatient service or acute palliative care unit.
(Ewing et al 2009, Saltmarsh 2009)

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produced some interesting findings. For example Ewing et al (2009) found areas of agreement between referrers and providers of services, particularly around the availability and use of expert advice. There were, however, areas of disagreement, and these mainly centred on the interface between specialist and generalist care. Particular issues included the risk that specialist palliative care services were being used to provide non-specialist care that ward staff did not have time to provide, and also that specialist input was potentially de-skilling members of the ward team. These findings raise important issues surrounding the role of generalist staff and specialists in fields other than palliative care. The majority of palliative care in hospitals is provided by these groups rather than specialist staff, and any effective strategy for palliative care provision in hospital must acknowledge and incorporate the contributions of both (Saltmarsh 2009). Complete time out activity 3 Nurses have numerous roles to play in the provision of palliative care in hospital. Some will be members of specialist teams and will have roles in education, symptom advice, care planning and counselling (Gott et al 2009). In some settings, nurses may lead the palliative care team (Namukwaya 2011). However, the majority will be engaged in the day-to-day support of patients and their families, with or without specialist input. Saltmarsh (2009) identified several specific ways in which nurses in hospital participate in palliative care. These include assessing pain and other symptoms, setting up and managing syringe pumps, arranging rapid discharge home to die and administering end of life care. Nurses also have an important role in supporting patients and families during the transition from care that is predominantly curative to that which is predominantly palliative (Gott et al 2011). The introduction of end of life care pathways such as the Liverpool Care Pathway has resulted in some nurses having an even greater role in monitoring and recording end of life care (Marie Curie Palliative Care Institute Liverpool 2010). rehabilitation and pharmacy; and experience a high throughput of suitable patients. In practice, there are many examples of hospitals delivering excellent palliative care (National Council for Palliative Care 2011). However, there is also evidence that many patients in hospital do not receive the palliative care that they or their relatives would wish for (Gott et al 2009, Saltmarsh 2009). Indeed, over half of all complaints received by the NHS relate to end of life care (Gott et al 2009), and one study of hospital nurses found that they regarded nearly 60% of deaths occurring in hospital as poor (Ferrand et al 2008, Gott et al 2009). Complete time out activity 4 Perhaps the single most important barrier to effective palliative care in hospital is lack of recognition by staff of patients palliative care needs. Studies suggest that patients can potentially be excluded from palliative care if their carers or families do not perceive them to be ready or suitable for a palliative approach (Ryan et al 2002, Gardiner et al 2011). Acknowledging and managing the transition from predominantly curative to predominantly palliative care seems to be particularly problematic (Gott et al 2011). In a setting where prolonging life is regarded as paramount, the shift to palliation can be difficult, being potentially associated with failure or giving up (Saltmarsh 2009). In addition, care may be focused on physical needs, and a shift to identifying and meeting information, communication, psychosocial and spiritual needs may be difficult (Parish et al 2006, Desmedt et al 2011). Another common reason for deficiencies in the provision of palliative care in hospital is inadequate resources (Fitzsimons et al 2007). This inadequacy may be at various levels ranging from insufficient ward nursing time to limited or non-existent specialist input. Indeed, inconsistency of specialist provision has been identified as one of the most significant factors in determining whether or not patients in hospital receive the palliation their conditions require (Cohen et al 2012). However, even when a specialist hospital palliative care service exists, this may not operate well or be used effectively. Some teams are restricted to only taking referrals from certain patient groups, such as those with cancer (Gardiner et al 2011). Some palliative care teams receive inappropriate referrals, or find themselves providing care that could more appropriately be carried out by the existing ward team (Kulkarni 2011, Weissman and Meier 2011).

Barriers to effective palliative care in hospital

In principle, hospitals would appear to be ideally placed to deliver high quality and effective palliative care. They contain large numbers of highly trained staff working in multidisciplinary teams; have access to an exhaustive range of specialist support services, including diagnostics, 52 june 13 :: vol 26 no 41 :: 2012

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Sometimes the fault lies with the specialist service itself, and a review of processes may be required to ensure that it is meeting the needs of the other teams it is providing a service to (Buchanan 2009, Ewing et al 2009, Rabow et al 2010, Sasahara et al 2010, Gott et al 2011). Therefore, there is a need for specialist teams to review and improve what they do continually. Equally important, however, is the need for adequate specialist input to be available in every hospital (Living and Dying Well Short Life Working Group 5 2010, Desmedt et al 2011, Voelker 2011). Lack of nursing time is the factor most often cited as contributing to suboptimal palliative care in hospital (Beckstrand et al 2006, Costello 2006). There are many instances of nurses and others being frustrated at their inability to provide the care they would wish to provide. Certainly interventions such as advance care planning, elucidating concerns, and providing patient and family support are potentially time and labour consuming (Fitzsimons et al 2007). However, insufficient training, for example about assessing symptoms or responding to difficult emotions, can exacerbate this problem and mean that even when time becomes available, it is not used as well as it could be (Ewing et al 2009, Gott et al 2009, Saltmarsh 2009). In this respect, the introduction of end of life care pathways, with the guidance they provide on what should be done to support the dying patient and when, has been a positive step towards a more proactive approach (Parish et al 2006, Le and Watt 2010).

to be in, is not an equitable one. There is a need for dedicated services to expand until a consistent level of provision is achieved. The exact design of the service provided will and should vary from hospital to hospital, reflecting the precise needs of the particular institution (Rabow et al 2010). The service provided must be sufficiently flexible and accessible, in that it genuinely complements and develops the care already provided (Ewing et al 2009). Whichever model of provision is adopted, data should be collected to demonstrate effectiveness and inform any changes necessary to improve outcomes (Le and Watt 2010).

Increasing and improving referrals to palliative care services in hospital

Effective relationships between dedicated palliative care services and referring clinicians are crucial to the success of palliative care provision in hospital (Ryan et al 2002). Agreeing clearly defined criteria for referral to the service will lead to an increase in appropriate referrals (Weissman and Meier 2011). However, referrals to specialist palliative care will not improve if there is a failure to recognise the onset or extent of palliative care need (Saltmarsh 2009, Gott et al 2011). Similarly, failure to recognise the potential benefits to patients and families of adopting or incorporating a palliative approach can lead to patients needs not being met (Ryan et al 2002). Raising awareness of palliative care needs and challenging entrenched attitudes about when to introduce palliative care may result in improved outcomes for those at risk of being denied the palliative care they require (Rodriguez et al 2007).

Improving palliative care in hospital

Despite many barriers, good quality palliative care in hospital must be provided as part of a comprehensive palliative care programme. There are numerous examples in the literature of how challenges to effective provision can be overcome, and how measurable improvements in clinical and organisational outcomes can be achieved as a result. The following examples demonstrate that institutions, specialist services, individual practitioners and service users can all contribute to improvements in the organisation and delivery of palliative care.

Achieving consistently high standards in ward-level delivery

Expanding dedicated palliative care services in hospital

The present situation, where the decision to refer someone for dedicated specialist palliative care input is dependent on what hospital they happen

Effective dedicated services are vital to good quality palliative care in hospital, but so too are high standards of ward-level delivery of palliative and end of life care. Staff training, the presence in each ward of a palliative care resource folder and the implementation of hospital or local health authority guidelines are ways in which optimal delivery at ward level can be achieved (Living and Dying Well Short Life Working Group 5 2010). The continued implementation of end of life care pathways, including the Liverpool Care Pathway, is an important way in which improvements in outcomes associated with the end of life are already being delivered (Marie Curie Palliative Care Institute Liverpool 2009, Saltmarsh 2009). Early identification of the palliative phase and of the end of life phase is crucial to these initiatives, and should be included in palliative care training for all staff (Fitzsimons et al 2007, Saltmarsh

3 Make a list of the ways that nurses can and do contribute to palliative and end of life care in hospital. Think about the unique contributions that nurses make, which are seldom or never made by other healthcare professionals. Reflect on the statement that nurses are at the hub of end of life care because they are in a unique position to interact with the patient, family and physicians (Ferrand et al 2008). 4 Think about the reasons why palliative care in hospital might not be delivered as effectively as it should. Make a list of possible barriers. You might use the sub-headings organisational or bureaucratic barriers, setting or team-specific barriers and individual or personal barriers.

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2009, Living and Dying Well Short Life Working Group 5 2010). but had a number of health issues herself. On admission, Harry was found to have severe back pain, constipation, thirst and mild confusion. Further investigations revealed extensive spinal metastases and hypercalcaemia. An oncologist was asked to review his case, but concluded that no further treatment was possible. After several days in the ward, Harrys pain had not responded to an escalating analgesic regimen prescribed by the ward team. In addition, staff were becoming increasingly alarmed at the reaction of Harry and Elsie to his admission. Both seemed devastated, but neither seemed ready or willing to talk about what the future might hold. The ward consultant had explained Harrys poor prognosis to the couple, but neither had seemed to absorb this. The hospital palliative care team was asked to review Harrys case. A specialist palliative care physician and a specialist palliative care nurse attended the next day and reviewed Harrys medication. The nurse also spent some time talking to Harry and made an arrangement to see him and his wife the next day. At that meeting, the nurse explored the couples knowledge of Harrys condition and their questions, hopes and fears. She encouraged them to talk about how they had dealt with previous challenges in their 65 years together, and helped them to think about their priorities for the future. Both Harry and Elsie admitted that discharge home was not an option. Instead, Elsie agreed to bring in some of Harrys things from home, including some family photographs and his favourite books. The ward staff were able to move Harry to a single room and Elsie was able to spend extended periods of time at his bedside. As Harrys condition continued to deteriorate, the ward staff kept Elsie informed of the changes and showed her how to moisten his lips and massage his hands. She was delighted to be a help instead of a hindrance. Harry died peacefully with Elsie at his side and the ward staff close by.

Involving service users

The Liverpool Care Pathway promotes the involvement of patients and families at the end of life. However, there is a need for a proactive approach to discussing patients future choices and wishes with them. One way this is being achieved is through the implementation of advance care planning. Such initiatives encourage clinicians to engage with patients and families around important issues and allow difficult conversations, for example about whether resuscitation is planned (Randall 2011). Involving service users at the planning stage of palliative care services in hospital may lead to the delivery of better designed and more responsive services. This is consistent with the trend towards a public health approach to dying, death and palliative care (Milligan et al 2011).

Role of individual hospital staff members

Although much can be done at the strategic and organisational levels to improve palliative care in hospital, these efforts will only be successful if complemented by participation of nurses and other healthcare professionals in the ward teams (Saltmarsh 2009). In the first instance, this requires that all practitioners know what specialist services are available within their setting and how to access them. In addition, substantial scope exists for ward teams to achieve improvements in physical symptom management, and in psychosocial and spiritual care (Parish et al 2006, Milligan 2011). Ward teams can also implement the advice of the specialist teams and in this way help to optimise the shared palliative care provided (Ewing et al 2009). Specialist teams, in turn, have a role in providing palliative care education and supporting effective practice by general staff (Rodriguez et al 2007).

Delivering palliative care in hospital

Examples of how palliative care in hospital might be delivered in practice are provided in the following case studies.

Case study 2

Case study 1

Harry, an 88-year-old retired plumber, was admitted to a medical ward in a district general hospital for investigations following a fall at home. He had a history of metastatic bladder cancer with deteriorating general health. His wife Elsie had cared for him for several years, 54 june 13 :: vol 26 no 41 :: 2012

Aminah is a 57-year-old woman with advanced chronic obstructive pulmonary disease (COPD). She experiences frequent exacerbations of her condition and has had five hospital admissions in the past six months. This time, she has been admitted to the respiratory ward following an acute attack of breathlessness. Aminah settled quickly into the ward she knew all the staff and the ward routines from previous admissions. After 24 hours, the

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oxygen that she required on admission was withdrawn with no ill effects. Medical staff reviewed her medication, but had few options beyond what they had previously tried. The next morning, while being helped with personal care, Aminah revealed to the nurse that she did not fully understand what was wrong with her or what the future held for her. This was in spite of the fact that Aminahs consultant had explained her condition to her and had told her that the disease was progressive and irreversible. Aminahs case was discussed at the interdisciplinary team meeting. It was agreed that the ward charge nurse would speak to Aminah and her husband Abdul to ascertain their understanding of her condition and to gain a fuller understanding of the couples needs. The meeting between Aminah, Abdul and the charge nurse took place the next day. The charge nurse asked about their experience of

Aminahs condition, what it was like, what it stopped them doing, what their main concerns were and what their fears for the future were. What emerged was a picture of confusion and distress. The couple remembered being told that Aminahs condition was incurable, but admitted that they had been putting that thought out of their minds. Aminah talked about how she dreaded going to bed at night in case she woke up breathless, and how she hated not being able to help with her grandchildren. Abdul expressed his anxiety about not knowing what to do when Aminah became breathless. It also transpired that Aminah had been forgetting to take her prescribed inhalers at the correct times. The charge nurse listened to all that was said, but also provided self-help advice on the correct use of inhalers and the importance of having an action plan to help deal with the breathlessness.

5 Think of a patient you have cared for who had unrecognised or unmet palliative care needs. Try to discern exactly why these needs were unmet. There may have been several factors involved. What could you have done to increase the likelihood of the patients needs being met?

References
Ahmad S, OMahony MS (2005) Where older people die: a retrospective, population-based study. QJM. 98, 12, 865-870. Audit Scotland (2008) Review of Palliative Care Services in Scotland. Audit Scotland, Edinburgh. http:// tiny.cc/nr_080821 (Last accessed: May 23 2012.) Babcock CW, Robinson LE (2011) A novel approach to hospital palliative care: an expanded role for counselors. Journal of Palliative Medicine. 14, 4, 491-500. Beckstrand RL, Callister LC, Kirchhoff KT (2006) Providing a good death: critical care nurses suggestions for improving end-of-life care. American Journal of Critical Care. 15, 1, 38-45. Bryson J, Coe G, Swami N et al (2010) Administrative outcomes five years after opening an acute palliative care unit at a comprehensive cancer center. Journal of Palliative Medicine. 13, 5, 559-565. Buchanan D (2009) Palliative Care in your Hospital. www.rcpe.ac.uk/ journal/abstracts/palliative_ medicine/buchanan.pdf (Last accessed: May 23 2012.) Casarett D, Johnson M, Smith D, Richardson D (2011) The optimal delivery of palliative care: a national comparison of the outcomes of consultation teams vs inpatient units. Archives of Internal Medicine. 171, 7, 649-655. Cassel JB, Webb-Wright J, Holmes J, Lyckholm L, Smith TJ (2010) Clinical and financial impact of a palliative care program at a small rural hospital. Journal of Palliative Medicine. 13, 11, 1339-1343. Cohen J, Wilson DM, Thurston A, MacLeod R, Deliens L (2012) Access to palliative care services in hospital: a matter of being in the right hospital. Hospital charts study in a Canadian city. Palliative Medicine. 26, 1, 89-94. Costello J (2006) Dying well: nurses experiences of good and bad deaths in hospital. Journal of Advanced Nursing. 54, 5, 594-601. Department of Health (2008) End of Life Care Strategy: Promoting High Quality Care for all Adults at the End of Life. The Stationery Office, London. Desmedt MS, de la Kethulle YL, Deveugele MI et al (2011) Palliative Inpatients in General Hospitals: A One-day Observational Study in Belgium. BMC Palliative Care. 10, 1, 2. Elsayem A, Calderon BB, Camarines EM, Lopez G, Bruera E, Fadul NA (2011) A month in an acute palliative care unit: clinical interventions and financial outcomes. American Journal of Hospice and Palliative Care. 28, 8, 550-555. Ewing G, Farquhar M, Booth S (2009) Delivering palliative care in an acute hospital setting: views of referrers and specialist providers. Journal of Pain and Symptom Management. 38, 3, 327-340. Ferrand E, Jabre P, Vincent-Genod C et al (2008) Circumstances of death in hospitalized patients and nurses perceptions: French multicenter Mort-a-lHpital survey. Archives of Internal Medicine. 168, 8, 867-875. Fitzsimons D, Mullan D, Wilson JS et al (2007) The challenge of patients unmet palliative care needs in the final stages of chronic illness. Palliative Medicine. 21,4, 313-322. Gardiner C, Cobb M, Gott M, Ingleton C (2011) Barriers to providing palliative care for older people in acute hospitals. Age and Ageing. 40, 2, 233-238. Gott M, Ingleton C, Gardiner C et al (2009) How to improve end of life care in acute hospitals. Nursing Older People. 21, 7, 26-29. Gott M, Ingleton C, Bennett MI, Gardiner C (2011) Transitions to palliative care in acute hospitals in England: qualitative study. British Medical Journal. 342, d1773. Health and Social Care in Northern Ireland, Department of Health, Social Services and Public Safety (2009) Northern Ireland Audit: Dying, Death and Bereavement. http://tiny.cc/NI_audit (Last accessed: May 23 2012.) Help the Hospices (2012) Information and Intelligence. www.helpthehospices.org.uk/ hospiceinformation (Last accessed: May 23 2012.) Hughes-Hallett T, Craft A, Davies C (2011) Palliative Care Funding Review: Funding The Right Care and Support for Everyone. http://tiny.cc/ palliative_funding (Last accessed: May 23 2012.) Jack B, Hillier V, Williams S, Oldham J (2006) Improving cancer patients pain: the impact of the hospital specialist palliative care team. European Journal of Cancer Care. 15, 5, 476-480. Jones JM, Cohen SR, Zimmerman C, Rodin G (2010) Quality of life and symptom burden in cancer patients admitted to an acute palliative care unit. Journal of Palliative Care. 26, 2, 94-102. Kulkarni PD (2011) Hospital-based palliative care: a case for integrating

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The charge nurse arranged for the couple to see the consultant to discuss Aminahs prognosis, her future treatment options and symptom management. Thereafter she had a follow-up meeting with the couple at which they started to write an advance care plan, listing all Aminahs wishes with regard to her future care. Aminah is now living at home and is still receiving active medical treatment for COPD. However, her symptom control is improved and she also has a fuller understanding of the implications of her disease. She is fearful of the future, but she derives some reassurance from knowing that she and Abdul have discussed her wishes and have communicated them to her care team. Complete time out activity 5

Conclusion
Hospital can be a frightening and daunting place to spend the final part of life. However most people will spend at least some of their last year of life in hospital, and most individuals, at present, are likely to die there. Optimising palliative and end of life care in hospital is key if the suffering so commonly associated with advanced illness, dying and death is to be reduced NS Complete time out activity 6

6 Now that you have completed the article, you might like to write a practice profile. Guidelines to help you are on page 60.

care with cure. Indian Journal of Palliative Care. 17, S74-S76. Le BH, Watt JN (2010) Care of the dying in Australias busiest hospital: benefits of palliative care consultation and methods to enhance access. Journal of Palliative Medicine. 13, 7, 855-860. Living and Dying Well Short Life Working Group 5 (2010) Recommendations on Palliative Care in Acute Hospitals. Scottish Department of Health, Edinburgh. Marie Curie Palliative Care Institute Liverpool (2009) National Care of the Dying Audit Hospitals (NCDAH) Round 2. http://tiny.cc/MCPCIL (Last accessed: May 23 2012.) Marie Curie Palliative Care Institute Liverpool (2010) What is the Liverpool Care Pathway for the Dying Patient (LCP) ? http://tiny.cc/ MCPCIL_LCP (Last accessed: May 23 2012.) Mercadante S, Intravaia G, Villari P et al (2008) Clinical and financial analysis of an acute palliative care unit in an oncological department. Palliative Medicine. 22, 6, 760-767. Milligan S (2011) Addressing the spiritual care needs of people near the end of life. Nursing Standard. 26, 4, 47-56. Milligan S, Bunce A, Pearce D, Haldane K, Hutchison K, Lennon K (2011) Attitudes to Death, Dying and Palliative Care: The Case for A Public Health Approach. 4th International Scientific Conference of College of Nursing, Jesenice, June 9-10 2011, Ljublijana, Slovenia.

Milligan S, Potts S (2009) The history of palliative care. In Stevens E, Jackson S, Milligan S (Eds) Palliative Nursing Across the Spectrum of Care. Wiley-Blackwell, Chichester, 5-16. Morrison RS, Dietrich J, Ladwig S et al (2011) Palliative care consultation teams cut hospital costs for Medicaid beneficiaries. Health Affairs. 30, 3, 454-463. Namukwaya E (2011) Hospital-Based Palliative Care. www.africa-health.com/articles/ july_2011/P_care_hospital.pdf (Last accessed: May 23 2012.) National Council for Palliative Care (2011) The Conversation: Dying Matters Blog. www.dyingmatters. org/blog/my-husbands-life-endedso-well-thanks-nhs (Last accessed: May 23 2012.) National End of Life Care Intelligence Network (2010) Variations in Place of Death in England. http://tiny.cc/ Eng_place_of_death (Last accessed: May 23 2012.) National End of Life Care Programme (2010) The Route to Success in End of Life Care: Achieving Quality in Acute Hospitals. http://tiny.cc/End_of_life_RTS (Last accessed: May 23 2012.) Parish K, Glaetzer K, Grbich C, Hammond L, Hegarty M, Annie M (2006) Dying for attention: palliative care in the acute setting. Australian Journal of Advanced Nursing. 24, 2, 21-25. Penrod JD, Dellenbaugh C, Burgess JF et al (2010) Hospital-based palliative

care consultation: effects on hospital cost. Journal of Palliative Medicine. 13, 8, 973-979. Rabow MW, Pantilat SZ, Kerr K et al (2010) The intersection of need and opportunity: assessing and capitalizing on opportunities to expand hospital-based palliative care services. Journal of Palliative Medicine. 13, 10, 1205-1210. Randall F (2011) Advance care planning: ethical and clinical implications for hospital medicine. British Journal of Hospital Medicine. 72, 8, 437-440. Rice EM, Betcher DK (2010) Palliative care in an acute care hospital: from pilot to consultation service. Medsurg Nursing. 19, 2, 107-112. Rodriguez KL, Barnato AE, Arnold RM (2007) Perceptions and utilization of palliative care services in acute care hospitals. Journal of Palliative Medicine. 10, 1, 99-110. Ryan A, Carter J, Lucas J, Berger J (2002) You need not make the journey alone: overcoming impediments to providing palliative care in a public urban teaching hospital. American Journal of Hospice and Palliative Care. 19, 3, 171-180. Saltmarsh P (2009) Palliative nursing care in the acute hospital. In Stevens E, Jackson S, Milligan S (Eds) Palliative Nursing Across the Spectrum of Care. Wiley-Blackwell, Chichester, 53-71. Sasahara T, Miyashita M, Umeda M et al (2010) Multiple evaluation of a hospital-based palliative care

consultation team in a university hospital: activities, patient outcome, and referring staffs view. Palliative and Supportive Care. 8, 1, 49-57. Scottish Government (2008) Living and Dying Well: A National Action Plan for Palliative and End of Life Care. www.scotland.gov.uk/ Resource/Doc/239823/0066155. pdf (Last accessed: May 23 2012.) Scottish Government (2011) Living and Dying Well: Building on Progress. www.scotland.gov.uk/ Resource/Doc/340076/0112559. pdf (Last accessed: May 23 2012.) Stjernswrd J, Foley KM, Ferris FD (2007) The public health strategy for palliative care. Journal of Pain and Symptom Management. 33, 5, 486-493. Tapsfield JB, Bates MJ (2011) Hospital based palliative care in sub-Saharan Africa; a six month review from Malawi. BMC Palliative Care. 10, 12. Voelker R (2011) Hospital palliative care programs raise grade to B in new report card on access. Journal of the American Medical Association. 306, 21, 2313-2314. Weissman DE, Meier DE (2011) Identifying patients in need of a palliative care assessment in the hospital setting: a consensus report from the Center to Advance Palliative Care. Journal of Palliative Medicine. 14, 1, 17-23. World Health Organization (2012) WHO Definition of Palliative Care. http://tinyurl.com/4xym28x (Last accessed: May 23 2012.)

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