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A good death in hospital

There is growing recognition of the impact that the increased ageing population will have on healthcare systems in the future, including how hospitals will cope with the numbers of dying patients. Although much emphasis has been placed on community care and deaths at home, it is likely that the majority of people will still die in hospital. Studies that have evaluated patient and family perceptions of the quality of dying and death in hospitals have consistently indicated a failure to achieve the goals of preparation for death, optimal symptom control and a limit on futile interventions. Until recently, the Liverpool Care Pathway (LCP) was considered the ‘gold standard’ for death in hospital. It was developed in the UK and adopted worldwide as a model that could be used to ensure good care of the dying. Based on a hospice approach to death, it encompasses a change in emphasis of care from life-prolonging to palliative. Several goals are listed that must be met in order to achieve a ‘good death’. These include stopping non-essential medications, tests and investigations, ensuring essential medications are charted by an appropriate route, a review of indications for assisted nutrition and hydration and facilitation of communication (ensuring that patients and family are aware that death is inevitable and are fully informed of the plan of care). The LCP emphasises that the achievement of these goals be clearly documented and any variance noted and explained. Ongoing assessment includes careful evaluation and documentation of the control of specified symptoms and any variance from adequate control noted. We advocated the use of the LCP in a previous editorial in this journal and it is used routinely in a number of hospitals throughout Australia. Although generally accepted as an excellent tool for the provision of a good death if properly utilised, the pathway was severely criticised in a recent independent review commissioned following multiple high profile complaints in the UK media. Most of the concerns related to a failure to engage families appropriately, leading to perceptions that patients were being oversedated, deprived of nutrition and hydration, and that decisions were being taken without the family’s consent. The report concluded that although good in principle, there was the risk that because of the focus on documentation, the LCP could be used as a tick box exercise and paradoxically lead to worse care if used incorrectly or incompetently. The term ‘pathway’ could be seen as a one-way track to death, whereas it should be seen as a change in the type of care that should help ensure best clinical practice. Subsequently, a cluster randomised trial undertaken in an Italian hospital failed to demonstrate any benefit in quality of care between wards in which the LCP was implemented and control wards. The trial was underpowered but demonstrated benefit to many patients in terms of respect and dignity at the end of life. It can be interpreted as showing the LCP to be no worse than other interventions. One of the recommendations of the review was for individualised end-of-life care plans rather than a generic pathway for all. But how can this be achieved? A prerequisite for success is an improvement in the preparedness of patients and families with regard to the likelihood of death and the opportunity to discuss more openly their choices. One model for this is the Respecting Patient Choices Program. Implementation of this model has been shown to improve end-of-life care and to reduce stress, anxiety and depression in surviving carers. Another is the ‘Amber care bundle’, a hospitalbased programme that is applied to patients with guarded or uncertain prognoses and encourages staff, patients and families to continue with treatment in the hope of a recovery, while talking openly about people’s wishes and putting plans in place should the worst happen. It consists of four elements: (i) talking to the person and their family to let them know that the healthcare team has concerns about their condition and to establish their preferences and wishes; (ii) deciding together how the person will be cared for should their condition get worse; (iii) documenting a medical plan that is agreed with all of the clinical team looking after the person; and (iv) discussion and agreement of these plans with the patient and carer. The UK End-of-Life Care Strategy lists quality standards around end-of-life care for those expected to die within 12 months and guidelines for improving care of the dying and their families have been developed by a ‘Leadership Alliance’ following the publication of the independent review of the LCP. The Australian Commission on Safety and Quality in Health Care has recently published a background paper that summarises the Australian context and advises on future initiatives. The valuation of any strategy designed to improve end-of-life care has been hampered by the lack of an agreed tool to bs_bs_banner