Diagnosing dying in the acute hospital setting – are we too late?

The findings

This audit has revealed that in the acute hospital setting, two thirds of all deaths can be anticipated at least four hours before the death occurs (100/154). However, the length of time from recognition of dying to death is short; 87% of patients are recognised as dying less than 72 hours before death.

Limitations

This was a retrospective audit as it was known that the patients had died and so an attempt to make fair decisions in determining whether the death could have been anticipated or not was made. Some would argue that the minimum four-hour period between the diagnosis of dying and death for inclusion in this audit was too short. This window was chosen because in four hours measures can be undertaken to change patient care meaningfully, and it also coincides with the timing of nursing observations. This audit did not look at patients who were thought to be dying, but subsequently improved, as the methods did not allow data capture about these patients. A prospective study of deaths in an acute trust that will include these patients is, however, currently being performed.

Links with existing knowledge – timing of diagnosis of dying in relation to death

Reports have shown that half of all deaths in the UK can be anticipated.³ In one study, recognising that elderly care patients were close to death occurred most frequently between 24 and 48 hours prior to death.⁴ A case-note audit on the implementation of the LCP showed the average length of time on a care of the dying pathway was 33 hours.⁵ Of deaths, 75% were highly or moderately expected by the nursing staff on general hospital wards in Italy when asked the question, ‘Had somebody told you yesterday that the patient would have died within a day how far would you have agreed?’⁶ The findings in this paper are consistent with these studies; clinicians do make the diagnosis of dying, but this occurs very close to death.

Links with existing knowledge – the challenges of diagnosing dying

Studies have highlighted that healthcare professionals have difficulty in making accurate prognostic predictions in patients with malignant and non-malignant disease, and that it can be difficult to diagnose dying.^7–11 Doctors' estimates of prognosis in terminally ill patients with cancer are usually overoptimistic.⁷ Why is it so difficult and can we do better? Diagnosing dying is a complex process including patient, healthcare professional and institutional factors. Patients with chronic non-cancer diseases, for example, can come close to death on several occasions before they die, making it difficult for healthcare professionals to determine which will be their last episode.⁹ In addition, patients and their families have very individual and changing needs with regard to knowing and accepting a prognosis,¹² yet up to one fifth of patients with a non-cancer diagnosis in the last year of their life are reported to suspect that they are dying.¹³ Qualitative interviews with terminally ill cancer patients show that people who are dying want to understand what is happening to them and can cope with this information.¹⁴ Focus groups of patients with advanced chronic illness, their families and healthcare professionals reveal they all agree that preparation for death is important for patients as many wanted to make funeral plans and know the timing of death.¹⁰

Links with existing knowledge – the role of healthcare professionals

Most healthcare professionals have little formal training in diagnosing dying and although most patients die within the hospital setting, looking after dying patients remains a small proportion of an individual clinician's workload.⁸ Healthcare professionals can be reluctant to diagnose dying if there is any hope of cure and death is often deemed as a failure.¹⁶ Qualitative interviews have revealed that some specialist clinicians, despite being sensitive and caring, express reluctance to face the palliative care needs of their patients and find it difficult to discuss prognostication and end-of-life issues with patients.^8,17

Studies suggest that the culture of large hospitals remains that the focus of care is cure; life prolongation and continuation of invasive procedures, investigations and treatments are often continued at the expense of comfort for the patient.^1,15 The acceptance of dying and the transition to end-of-life care can be difficult.¹ There is an abundance of literature to suggest that the palliative care approach should be fully integrated into the hospital setting.^17,18 Although advances have been made over the past few decades, the ability to judge prognosis has not changed during this time⁸; research tools are emerging to predict short-term survival and these have been investigated in the acute hospital setting but further work is needed before these can be used routinely in clinical practice.^19,20

Implications for practice

It is clear that healthcare professionals do not find it easy to diagnose dying and this is perhaps reflected in the recent national end-of-life care audit results; in institutions where the LCP had been rolled out, only 15% of patients who had died were placed on the pathway.²¹ Instead of asking healthcare professionals to make accurate prognoses or diagnose dying, an environment needs to be created where teams feel comfortable in actively medically managing patients (appropriately) alongside considering their symptom control and planning for possible end-of-life care. Posing the question, ‘Would you be surprised if this patient died on this admission?’ to teams caring for patients is the first step, however, this would require considerable time and skills to be introduced properly.