Care in the community

British Medical Journal, Jan 31, 1998 by Bill O'Neill, Ann Rodway

The physical complexities of progressive and life threatening disease, coupled with attendant emotional and psychological consequences, demand careful coordination between primary, secondary, and tertiary care. Across the whole range of health services, an increasing amount of care is being provided on an outpatient basis or independently of hospitals altogether: most terminally ill patients spend most of their time at home.

In the planning of care and agreeing a management plan, patients must be given an opportunity to express their wishes and these must be taken into account. Patients can make valid choices between treatment options only if they know what is happening, what help is available, what is likely to happen, and what help will be available in the future.

It is important to document accurately at each point what a patient's wishes are. Information must be tailored to patients to meet their need for knowledge and given at a pace with which they can cope. Rarely, patients may choose not to be informed. Some patients may wish to complete an advance statement, giving instructions about their wishes in the event of their losing the capacity to decide or to communicate.

Demands of home care

It can be much easier to care for patients in a hospital, hospice, or nursing home because of the infrastructure and immediate support available. Caring for a patient at home presents a challenge, and sometimes a burden, that is not as easily shared as in an institutional setting.

Although most patients wish to die at home, barely a quarter manage to do so. Over 90% of all patients with cancer spend some time in hospital during the last year of life, while 55% die in hospital and 17% die in a hospice. The desired place of death may change with altered circumstances, the most obvious being difficult symptoms and lack of practical help at home. Patients who are frightened, insecure, or lack confidence in their support network are more likely to seek urgent admission to hospital or hospice. Equally, if informal carers are physically or mentally tired they are more likely to seek admission, even when death is imminent.

Managing a patient at home requires not only an accurate assessment of the patient and his or her illness, concomitant physical and psychological symptoms, and support network but also an assessment of the patient's home. This may require a#. occupational therapist or physiotherapist to advise on the need for aids and, if necessary, modifications to the home. Forward planning is crucial, and much effort has to go into the general structure of care, which must be individualised for each patient. While primary care teams can systematically work through the aspects noted above, there is no automatic formula for all cases.

Stressed families caring for a dying patient are unlikely to have their thoughts well organised at the time of a first meeting. Primary care teams should help families and patients to evolve their thoughts, feelings, anxieties, and fears so that they can verbalise them, discuss what needs to be discussed, find answers to those problems that hat solutions, get reassurance when it is appropriate, and develop a plan of action for problems that have no easy solution and are likely to worsen.

Life threatening disease often exposes ambiguities in family relationships. General practitioners are in an excellent position to understand past and present relationships, but they can be surprised by old unresolved problems uncovered in the stress of a terminal illness. An understanding of past relationships and behaviours, coupled with discussion and explanation of what is happening, may ease the situation. More complex problems may require referral to a clinical psychologist or a professional trained in family therapy. However, do not expect to resolve 30 years of conflict in the three weeks before death.

Primary care teams must maintain a role as gatekeepers to care, not just for referrals to specialist centres but also for referrals to specialist teams in the community. General pr-actitioners should be consulted before hospital patients are referred to specialist community teams prior to discharge. Timing of referral is important, and, while referrals should be made early rather than late, there should be explicit agreement on the extent of involvement, including responsibility for counselling and emotional support for patient and family.

Coordination of professionals

Communication

If a patient is to be cared for at home, good communication from hospital or hospice to primary care team is essential. Practical difficulties make it harder to achieve high standards of communication in the community and between institutional and community staff than within institutions.

Some primary care teams allow specialist community teams access to records held at the practice. Others invite members of community teams to practice meetings when patient care is being discussed. There is an argument for patient held records, in which details of proposed treatment and any subsequent changes could be recorded. Community nursing notes are commonly kept in patients' homes, and it is important that others caring for patients should consult these notes and make entries in them in order to facilitate communication.