Intended for healthcare professionals

Spotlight Spotlight: Palliative Care Beyond Cancer

Achieving a good death for all

BMJ 2010; 341 doi: https://doi.org/10.1136/bmj.c4861 (Published 16 September 2010) Cite this as: BMJ 2010;341:c4861
  1. John Ellershaw, professor of palliative medicine13,
  2. Steve Dewar, director of research and innovation2,
  3. Deborah Murphy, associate director13
  1. 1Marie Curie Palliative Care Institute, University of Liverpool, Liverpool L69 3BX
  2. 2Marie Curie Cancer Care, London SE1 7TP
  3. 3Royal Liverpool and Broadgreen University Hospitals NHS Trust, Liverpool L7 8XP
  1. Correspondence to: j.e.ellershaw{at}liv.ac.uk
  • Accepted 15 May 2010

A good death for all is now recognised as a priority at societal and political levels. To achieve this goal we need a fundamental shift of emphasis: to train and educate healthcare professionals, to ensure rigorous assessment of new end of life care services that aim to improve quality and choice, and to explore best use of resources.

“How people die remains in the memory of those who live on.”

Dame Cicely Saunders1

The importance of high quality care for patients in the final hours and days of life has received national recognition in recent years.2 3 Increasingly the need to establish this element of care in the core business of hospitals and other care settings is acknowledged. Providing high quality care for the dying is a marker of our commitment to the delivery of care to all. As Mike Richards, national clinical director for end of life care in the UK, remarked in the foreword of the first National Care of the Dying Audit of Hospitals in England in 2007,4 “How we care for the dying must surely be an indicator of how we care for all our sick and vulnerable patients.” The growing proportion of elderly people in the developed world will have consequences for the economies and healthcare systems of these countries. The elderly are “more likely to have highly complex problems and disabilities, and need packages of care that require partnership and collaboration between different groups and across many settings”.5 The number of deaths in England and Wales is set to increase by 17% between 2012 and 20306 and WHO5 suggests that provision of palliative care and, more specifically, services to deliver care for the dying, need to be enhanced and made available in all care settings to make this situation “manageable.”

Where do people die?

Currently, the majority of deaths in England (56%) occur in NHS hospitals and institutions.7 All healthcare professionals in this setting need to have the appropriate skills and knowledge to provide optimum care for dying patients and their relatives and carers. Despite care of the dying being a core clinical activity, many professionals do not receive specific preparation in this area during their initial training, and few receive any ongoing training. This issue lay at the heart of much of the media disquiet over the variable degree of care taken in the implementation of care for the dying. Mike Richards remarked recently that “there are 1.3 million people working in the NHS and almost all of them have roles in end of life care…we train all clinicians in resuscitation though relatively few will use this skill in any one year. I would like to see a similar approach so that all staff are trained in end of life care.”8

Liverpool care pathway

One programme aimed at improving care of the imminently dying is the Liverpool care pathway for the dying patient (LCP), led by the Marie Curie Palliative Care Institute Liverpool.9 The initiative has been supported and recommended by the Department of Health2 3 as a means to translate the key principles of the hospice model of care (box) into general healthcare settings, including hospitals, care homes, and patients’ own homes. The LCP is an integrated care pathway that supports clinicians in making important decisions about care for the dying. Importantly, use of the document is reinforced through continuous education and training for doctors, nurses, and other healthcare professionals. A systematic, ten step implementation process within a four phased service improvement model underpins the programme.10 The document, like any integrated care pathway, continues to evolve, taking into account developments in evidence based medicine and clinical practice. Version 12 strengthens the guidance on initiating the LCP and consideration of clinically assisted (artificial) hydration.11

Best practice in the last hours and days of life

  • Current drugs are assessed and non-essential ones discontinued

  • “As required” subcutaneous medication is prescribed according to an agreed protocol to manage pain, agitation, nausea and vomiting and respiratory tract secretions

  • Decisions are taken to discontinue inappropriate interventions

  • The ability of the patient, family, and carers to communicate is assessed

  • The insights of the patient, family, and carers into the patient’s condition are identified

  • Religious and spiritual needs of the patient, family, and carers are assessed

  • Means of informing family and carers of the patient’s impending death are identified

  • Family and carers are given appropriate written information

  • The general practitioner is made aware of the patient’s condition

  • A plan of care is explained and discussed with the patient, family, and carers

  • From National Institute for Health and Clinical Excellence, 2004.12

The research evidence for improvement in care of the dying based on the LCP continues to emerge in the UK and internationally. Qualitative evidence has shown that it improves the confidence of nurses and doctors in delivering care to imminently dying patients.13 14 A before and after study in hospitals and nursing homes in the Netherlands showed a fall in the burden of symptoms and improvements in documentation of care.15 The results of a questionnaire study of bereaved relatives in the hospital setting showed that those relatives of patients being cared for on the LCP perceived a higher quality of care than the relatives of those who were not cared for on the pathway.16 In the care home environment, Hockley and colleagues reported improved anticipatory prescribing of medication for five key symptoms and an improvement in multidisciplinary team working.17

National care of the dying audit

Specifically in the hospital setting, round 2 of the National Care of the Dying Audit of Hospitals in England has provided evidence of the care delivered for 155 hospitals using data from 3893 patients whose care was supported by the LCP at the end of life.18 The audit was led by the Marie Curie Palliative Care Institute Liverpool, in collaboration with the Royal College of Physicians, supported by Marie Curie Cancer Care and the Department of Health End of Life Programme. Significantly, the proportion of patients in the audit with a diagnosis other than cancer increased from 55% in round 1 (2006/7) to 65% in round 2 (2008/9), which supports the use of the LCP for all patients irrespective of diagnosis and illustrates the multi-professional recognition of its wider applicability. For the majority of patients, drugs were prescribed in anticipation of five physical symptoms known to be common at the end of life (pain, agitation, respiratory tract secretions, nausea and vomiting, and dyspnoea). For more than 70% of up to 16 475 assessments made at four hourly intervals in the last 24 hours of life, patients were reported to be free from these symptoms, which illustrates that good quality care can be delivered in this environment. However, the audit did identify some areas for improvement, including communication, assessment of spiritual and religious needs, and care after death.

Where do people want to die?

Central to a good death is respect for the patient’s wishes about their preferred place of care. In recent years the choice to die at home has become a central tenet of public policy based on the well documented preference to die at home— between 56% and 74% of the population of Great Britain report such a preference.19 However between 1974 and 2003 the proportion of home deaths in England and Wales fell from 31.1% to 18%.6 Undoubtedly, more insight is needed into the factors that shape these expressed choices and how they may alter according to illness or the imminence of death. Nonetheless the gap between espoused and actual home deaths is, for many, evidence of the need to enhance support in the community, to provide choice for patients and avoid inappropriate admission.

What is the evidence that more patients could or should die in the community? The National Audit Office’s case note review of all patients who died in a month in one UK city identified 40% whose medical needs at the point of admission had not required them to be in hospital and who could have been cared for elsewhere.20 These 80 patients used 1500 bed days in acute hospitals. Further evidence was provided by a systematic audit of deaths that occurred in a year in one UK hospital; its conclusion was that up to a third of all people who died in hospital could have been looked after at home if excellent end of life services had been in place.21 A recent systematic review that assessed the effect of enhanced community services on the use of acute inpatient services22 found that “in comparison with usual services, palliative home care reduced general health service use, inpatient mortality, and increased patient and family satisfaction with care.” However, the methodological quality of the included studies was far from robust. A descriptive analysis of the Marie Curie Cancer Care delivering choice programme in Lincolnshire showed an increased rate of home deaths and lower rate of hospital admissions for those who received a rapid response intervention.23 But this analysis was not able to assess the effect against any comparative group or establish whether such findings could have been caused, at least in part, by the self selecting nature of the sample.

Resource implications

The argument for how better quality end of life care may come cheaper is well put by the National Audit Office: “reducing hospital utilisation by people at the end of life has the potential to improve patient care by transferring patients to their preferred care setting whilst releasing resources to be used to deliver care outside of hospital”.21 But many commissioners may question the ease with which saved admissions can be converted to realisable savings that can be invested in the necessary community services required to deliver the shift. The apparent universality of supply induced demand in health care means that many trusts will remain sceptical of whether reduced admissions will translate to savings or be replaced by other activity.

Providing care for patients in the last hours and days of life in the care home sector is another potential mechanism for reducing inappropriate admission to the acute hospital sector and delivering choice. Again the evidence is persuasive without being compelling. The NAO audit work suggested the proportion of care home residents dying in their care home “could have been increased from 61% to 80% if alternative care pathways had been followed, thereby avoiding inappropriate hospital admissions.”21 Similarly, the audit of deaths in one hospital suggested that “69% of those admitted from nursing homes could have stayed in the nursing home to die.”21 Regardless of the cost implications, the imperative to make a good death a reality in the patient’s own home and in care homes is paramount. The LCP is currently being used by trained community

healthcare professionals in some homes and care homes, which may be part of the answer to building capacity. However, a key challenge for care homes might be the establishment of a culture that enables achieving a “good death” as a marketable and welcome characteristic. A national project is under way to implement the LCP in the care home environment. This implementation process is underpinned by a model of education and training specifically created for this environment which is subject to ongoing review and development as part of the process. At the end of the project, a sustainable model of implementation, education, and training will be available for wider use.

Conclusion

In view of the changing demographics of death, the changing pattern of dying, and the policy and financial imperatives, many new service configurations are likely to be tried. To deepen our understanding of what works and why, we will need to hone our measurements of effect and support further research and evaluation. However, an even more radical shift may be necessary. Given a future of fewer carers, fewer resources, and a dramatic increase in chronic disease and comorbidities, we may need to consider whether communities, rather than health services, need to take on more of the burden of care at the end of life.

In the meantime, we must strive to ensure that a good death is the expectation rather than the exception in all settings. Mandatory training in care of the dying alongside the LCP programme potentially provides an effective mechanism for the delivery of high quality care to achieve a good death for all.

Notes

Cite this as: BMJ 2010;341:c4861

Footnotes

  • doi:10.1136/bmj.c4863
  • doi:10.1136/bmj.c4862
  • doi:10.1136/bmj.c4860
  • doi:10.1136/bmj.c4859
  • Part of the costs of producing the BMJ supplement in which this article appeared were met by the British Heart Foundation. The article was commissioned and peer reviewed according to the BMJ’s usual process.

  • Contributors and sources: The authors of this paper have considerable complementary experience in the area of improving care for dying patients and support for their relatives and carers. JE (guarantor for the paper) is professor of palliative medicine at the University of Liverpool; director of the Marie Curie Palliative Care Institute Liverpool, the main aim of which is to improve care of the dying; national clinical lead for the LCP; and national deputy clinical director for end of life care for the Department of Health. SD is director of Research and Innovation for Marie Curie Cancer Care, with expertise in evaluation of service redesign and delivery. DM is Associate Director of Marie Curie Palliative Care Institute Liverpool and national lead nurse for the LCP.

  • Competing interests: All authors have completed the Unified Competing Interest form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; and no other relationships or activities that could appear to have influenced the submitted work.

References