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Patient dying in hospital: an honoured guest in an honoured place?

S. Donnelly
DOI: http://dx.doi.org/10.1093/qjmed/hct064 First published online: 14 March 2013

This title is adapted from an inspiring essay by Ken Warpole.1 Commissioned by the Irish Hospice Foundation in 2005, Warpole reviewed the architecture and design of hospital spaces in which the dying find themselves. The idea of hospital being an honoured place with dying patients as honoured guests opens a new window into our daily reality of working in hospitals.

In 1908 William Osler undertook a substantial study of sequential hospital death in the USA.2 Having studied 486 deaths at John Hopkins Hospital, Osler summarized his findings with the reassuring statement ‘90 suffered bodily pain or distress, 11 showed mental apprehension. The great majority gave no sign one way or the other like their birth their death was a sleep and a forgetting’.

Much of the literature and research concerning the modern attitude to death contains a critique of hospitalized death with its representation as a threat to an idealized good death.3,4 Literature suggests that the battle lines have been drawn between relatives advocating for the person who is dying and hospital staff who ‘manage’ the care of the patient who is dying and provide the ‘archetypal bad’ medicalized death.4 Medicalized dying is described as divorced from lay understanding, culturally and religiously barren.4

In many countries, the majority of people die in hospital and will continue to do so.5 The number of home deaths in England and Wales could reduce by 42% by 2030.6 Seventy-five percent of patients with cancer died in institutional settings.5 Sixty percent of deaths occurred in hospital in USA.7 With a projected dramatic rise in total number of deaths due to increasing ageing of the population, death at home may only be a reality for 10% of patients.6

While it is the case that most deaths occur in hospitals, there is evidence that dying in hospital is not always a good experience and that the needs of such patients are not met by the care culture of larger hospitals.8,9 A 2004 survey10 of public attitudes and experiences regarding dying in Ireland found that 67% of 1000 respondents prefer to die at home. The authors emphasize that ‘a substantial proportion felt that considerable or urgent improvement is needed in the hospital care of dying patients’. Yet, within that survey 75% of the 287 people who had experience of someone close dying in hospital described the care as good to excellent.

Steinhauser et al.11 conclude that good and bad deaths occur in all settings—hospices, hospitals and at home. There is a presumption that patients prefer to die at home but preferences are complex5 and many prefer hospital or have no preference.12,13 In an audit by Gerrard et al.14 as death approached patients’ wishes regarding place of care changed. A greater number of patients wished to die in hospital than was expected.

A 1994 article15 on care of dying patients in hospital based on 1983 research observes nursing care of patients within 6 days of their death on hospital wards with disturbing case examples. The results are shocking when read in 2013. Dying patients were usually alone. As the time of death approached, their isolation increased. There was minimal attention paid by senior medical and nursing staff. The authors were moderate and considered in their criticism. They noted that there were many factors beyond the control of staff, e.g. lack of education, busyness, ward environment and distancing tactics. Their question was a good one: how these attitudes and behaviours can be changed to benefit patients while simultaneously protecting carers. They recommend creating a climate conducive to the practice of caring skills and justifying time spent with a patient during the final stage of living. They remind us that ‘dying patients are integral part of the population of general hospitals’ echoed by Conroy16 in 2011.

In 2003, Pincombe et al.9 used nonparticipant observation of the care of 20 dying patients on medical wards in two teaching hospitals in Australia, then interviewed 12 nurses, 2 interns, 1 consultant physician, 3 physiotherapists, 1 dietician and 1 social worker. The observation component of this study mirrors the 1983 study15 and is a strength in the research design. They did not however interview families. They did include observation of patients who had no family members present to provide care. Such patients without families were left isolated and unattended. Pincombe et al.9 concluded that there was no culture of care for the dying in hospital.

There is a growing body of qualitative research exploring families and hospital staff’s view of essential aspects of care when a patient is dying in hospital. This research suggests that behaviour and ways of being are fundamental to the experience.

Williams et al.17 undertook in-depth interviews with next of kin on the role of nursing staff. They identified clinical competency and thoughtful attention to family needs as fundamental. Mossin et al.18 identified through grounded theory research with bereaved spouses the importance of being present when a patient is dying. Of particular interest is Spichiger’s19 qualitative research in a tertiary referral hospital identifying that ‘patients and families assessed their experience with care providers mainly in the latter's commitment or lack of commitment to caring for them’. Patients and families appreciated friendly, cheerful and well-mannered providers who showed empathy, consideration, and respect. The absence of these qualities caused distress. Patients and families were aware of their influence on interactions with providers; as dependent partners, they tried to improve and not to damage their relationships with providers. Spichiger concluded that professionals can decisively influence the quality of hospital end-of-life care through their relationships with patients and family members.

Golden20 identified that within the hospital, interactions (with lay and professionals) shaped how family members experienced the death and dying of their relative.

It is interesting that in Oliver’s review21 of ‘comfort care packs’ for relatives attending dying patient in hospital, few of the pack items were actually used by the recipients. The author suggested that the value of the packs to recipients lay in the gesture of being thought about during this difficult time. VOICES, a national bereavement survey,22 found that being shown dignity and respect by staff was highest in hospices at 87% for doctors and 80% nurses and in hospitals 57% for doctors and 48% nurses.

Some people choose to die in hospital rather than at home or in a hospice. Families in a 20102,3 study were grateful for the care given to a patient who is dying in hospital praising the humanity, compassion and professionalism of nurses and doctors. They also identified areas requiring significant improvement. The authors suggested that it would be a more serious deficit if humanity, professionalism and compassion were lacking and the environment impeccable. The families of dying people are keen observers, critical and intuitive and protective of their relative who is about to die. To the professional carer, the family member in residence may seem formidable and indeed may never appreciate the other demands on nurses and doctors who serve them.

An area for future research will be to record staff’s views including junior doctors and map them against relatives’ experiences. In their planning concepts, hospitals are not designed to support staff in accommodating not only a patient who is dying but the varying number of family members who take up residence. Families’ expectations are not extraordinary. They become extraordinary however when and where doctors and nurses do not have time to reveal their inherent humanity, professional communication skills and empathy. Families prefer that the patient is cared for where they were well known whether it is a busy surgical or medical ward or a cancer ward. Lay respondents’ descriptions of dying in hospital as ‘beautiful’23 do not necessarily correspond to the dominant discourse in the literature decrying the medicalization of death. Fundamental to the relationships on general medical wards is the time given by doctors, nurses, care assistants and chaplains to patients who are dying and their relatives as well as a recognition by staff of the significance of the moment of death for relatives.

Royal College of Physicians (RCP) report in 20122,4 cautions that while a wealth of resources has been developed to support the delivery of high-quality care for the dying patient, ‘most have not yet become part of routine practice at a personal or organisational level’. There is a mismatch between physicians’ perceived competence in care of dying person and complaints. As physicians we do care. We train to care. But we are not seen to care.

RCP suggests that patient stories or those of bereaved carers provide a powerful resource. Lynn et al.1 wrote that dying is not only what the patient experiences but also what the family remembers. The problems that families report warrant attention regardless of whether the patients would have described their dying differently. Donnelly et al.23,25,26 have built up a body of work using the eyewitness accounts of relatives to guide physicians and nurse as to the gaps between perception and reality.

As over half of all NHS complaints pertain to problems with care in the dying phase, particularly with regard to poor communication, Al-Qurainy et al.27 recommend construction of a framework of strategies for improvement in care of dying in hospital including communication skills training, integrated care pathways and advance planning. RCP24 cautions against the introduction of tools for care of dying without an extensive programme of education and support to hospital staff. They discourage counterproductive tick box approach to care of the dying patient. In addition to resources such as pathways or protocols, we need to pose new questions about hospital care of the dying patient.

More recent literature points to a need to look at our behaviour towards dying patients, their families and our colleagues. This is a more radical approach. How do we behave towards other people within the hospital environment? How do staff show they care for the dying patient and grieving family? How can we make time for the dying patient and family? How can senior doctors and nurses show leadership and model compassionate and competent behaviour? How do we support our less experienced staff and colleagues in the face of dying and death in hospital?

The questions remain. Are the dying patients and their families our honoured guests? Are the hospitals in which we work honoured places?

Conflict of interest: None declared.