Decisions on end of life care in the community
We will all die, but in what circumstances will we die? Many of us would wish to have control over the situation at the end of life, for example, where it should take place and who should be present. Somehow a feeling of being in control brings comfort to patients approaching death. Some authorities advocate that people should be encouraged to expect the right to choose their place of death1 in the same way as the Patient's Charter allows women to choose where they give birth.2
According to one reviewer, 'When it comes to dying there is no place like home.'1 The government rightly wants respect shown to terminally ill patients and to see them able to choose the location of their end of life care. Surveys have shown that most people, if asked in advance, state that they would prefer to die at home, but in reality most die in hospital.3
It has been said that for many people, the place of death is by default rather than by choice, but because on average, 90 per cent of the final year of life is spent at home, good home care is relevant wherever the actual death occurs.4 The proportion of people dying at home varies greatly by geographical region, age group and diagnostic category.3
Dying at home is largely dependent on being able to access adequate care and it is the two-thirds of patients aged over 75 years who need special consideration.5 This is because many in this age group live alone and have no supportive social network on which to call. Others stay in residential care homes without nursing facilities and these establishments may not willingly accede to patients' wishes to die in their usual residence. This question has been addressed with the Care Home Programme,6 a training scheme offered to residential care home staff.
The significance behind a patient's choice of a home death is unclear. Patients may be expressing a wish for the type of death which can be managed at home, rather than an actual preferred location.7 Patients may change their minds when seeing the effect of their illness on relatives struggling to provide care, or when symptoms are not controlled at home. Home care up to the moment of death may not always be in the best interests of patient or family.
As yet, there is inadequate research for building evidence-based policies, because palliative care is a relatively young specialty in which critical appraisal is a recent phenomenon. Lack of agreed criteria for good service hinders research into questions about the place and manner of death, and feedback for those most concerned is difficult to obtain.8
Some people die unexpectedly, from an acute illness or an accident in circumstances where they have no real choice about the location where they spend their final moments. This situation may be inevitable, but does not preclude due respect for any known wishes. However, when patients are aware in advance that they have a life-threatening illness, they may wish to prepare for their death, including selecting the location of care and who should be involved. They may consider not only their own comfort, but also any effects on family and friends. Those who were close to the patient at the time of death will live with the memories of the dying person's departure. What is important is that they should feel that everything that could have been done was done during those last few days.9
The role of the GP
The task of ensuring that everything feasible is done for the patient, after taking into account their views, falls largely to the GP, who may have known the patient for a long time and have a good understanding of their thinking. The GP has access to all information about the patient's condition, knows about local services and can call on them for support. An example of this is signing the D1500 form for an urgent request for attendance allowance. A family physician's role is to be an advocate for patients and to co-ordinate services for their benefit.
The GP is the natural leader for the diverse group of professionals involved in home care, using the NICE guidelines10 and the Gold Standards Framework.11 GPs should find that using this framework, which lists seven key tasks (see Box 1) improves quality of care, as well as increasing the proportion of people who die in their preferred place.12 At the last, the Liverpool Care Pathway comes into use.13 Originally designed for cancer cases, this pathway has been adapted for other terminal illnesses.
Resources available to support home care
The patient may live in a location with good public utilities, comprehensive social services and access to excellent medical facilities. The home environment may be conducive to the organisation of nursing care without unacceptable disturbance to other people who live there.
The patient may have capable and willing friends or relatives nearby, with time to spend on caring, and may have the mental resources to marshal facts, face the truth, weigh up pros and cons, communicate a decision and accept compromises if necessary. But this is an ideal scenario and nothing can be taken for granted. For example, some support services are only open during the day on weekdays, while in rural areas, distance may preclude frequent visits from nurses.