1 Expectations and administrative pressures
The medical prognoses and diagnoses of dying raise expectations of what will actually happen to the dying person. For example, someone is diagnosed with terminal lung cancer, they may be given a forecast that covers the estimated length of time before death, any likely symptoms, the development of the illness, and possible treatment(s). Of course, these types of medical expectations are not unique to death and dying: they are found in all treatments of illness, and no doubt you will have had similar experiences of having an illness diagnosed by a GP and being told what to expect.
In dying, however, prognoses such as these are problematic because of the levels of certainty they assume and how they affect professionals’ behaviour towards the dying person. Glaser and Strauss, in their study of dying patterns, point this out in considering how nurses behave around patients:
Nurses’ definitions of the patient’s illness status – that is, their expectations – affect their behaviour towards him. Therefore, the moment when their expectations change is significant. For example, even when the physician’s cues imply that the patient is doomed, as when he stops blood transfusions, the nurses may still not be absolutely sure that the implied prediction is accurate. They may not lower their levels of alertness or reduce their effort to save the patient.
This resonated with one person, who commented on how this echoed her own past experience of expectation and prognosis, which had not been a particularly positive one:
As my grandfather lay in a hospital bed for six weeks, at some point (I cannot recall when) a ‘Do not resuscitate’ card appeared at the foot of his bed. This card, which came out of the blue and had not been discussed with my family, signalled to me and everyone else on the ward that my grandfather had been identified by the medical personnel as someone who they were not willing to ‘work on’ anymore. From that moment on it appeared that the clinical staff's behaviour around my grandfather changed, as if he was doomed in some way.
Although a ‘do not resuscitate’ form – also known as a DNACPR for do not attempt cardiopulmonary resuscitation – does not mean there has been a decision to stop other treatments or care, it can be symbolically interpreted as such, both by patients and their families or by professionals. Because of this, clinicians in the UK are encouraged to think about ‘treatment escalation plans’ that indicate a range of treatment decisions and encourage those caring for the patient to continue routine care as appropriate.
The sociologist, Kellehear (2007) points out that dying does not take place in a social and physical vacuum. For example, it has implications for the way in which medicalised dying is managed. When dying takes place in a public, (relatively) open and visible space such as a hospital, or a section of a hospital such as the intensive care setting, an individual’s experience becomes a communal issue and a public administrative matter. For example, there may be enormous pressure on beds in a ward where someone is dying – the pressure for the administrators of the hospital is to have a high turnover of patients to ensure that targets for treatment are met. One result of this is that people who exceed the medical expectations of their prognoses become problematic. The following example is taken from the system of health care in the USA; nonetheless, it provides a vivid illustration of the tension between medical predictability, administrative efficiency and providing appropriate and suitable end-of-life care.
A patient expected to die on time, but who suddenly begins to recover slightly or to linger – the short-term reprieve pattern – can cause problems for nurses, family, physicians, and hospital administrators. Here is an example: one patient who was expected to die within four hours had no money, but needed a special machine during his last days. A private hospital, at which he had been a frequent paying patient for thirty years, agreed to receive him as a charity patient. He did not die immediately but started to linger indefinitely, even to the point where there was some hope he might live. The money problem, however, created much concern among both his family members and the hospital administrators. Paradoxically, the doctor had continually to reassure both parties that this patient, who actually lasted six weeks, would soon die; that is, to try to change their expectations back to ‘certain to die on time’.
This can have repercussions on several practical levels. When death is so unpredictable and there is a high premium on being with someone at the end of life, such tensions can cause distress. This is no different for those who are medically diagnosed as dying, as you can see from Glaser and Strauss’s example. Someone who ‘lingers’ – itself a problematic term as it implies that the lingering person is a nuisance – creates difficulties for the family, who are also left in an indeterminate state. In this example, the authors did not elaborate on what the family did, but one can imagine the difficulty in negotiating compassionate leave from work over a period of six weeks. A team member recounted how when her father was dying (he was given a six-month prognosis but lived for 14 months) she had been saving her leave to help to care for him in the last few weeks of his life, but ended up losing her leave because she had not been able to carry any forward to the next year, leaving her exhausted. The medicalisation of the dying process, therefore, cannot be assessed and examined separately from the practical and policy context within which it takes place.