Community Palliative Care Service

Community care is one area of health care where there are wide variations between one country and another, and even within a country. Some countries have well established primary care services staffed by general practitioners / family physicians supported by community nurses /”district nurses” and even nurses registered as specialists in paediatrics, palliative care, cardiology, renal medicine, chest medicine, diabetes, psychiatry and stoma care. In contrast there are others where patients must travel to clinics many miles from their homes or wait for a travelling clinic which serves their village every few weeks at best, any acute illness necessitating them being taken to a distant hospital’s Accident and Emergency Department.

In some cultures everything possible is done to care for terminally ill people at home and to enable them to die there.  In many countries, however, death at home is becoming unusual though, as many studies have shown, the patient may be keen to remain at home as long as possible, and the relatives a little less enthusiastic about that.

If the doctors who care for people at home seldom make house visits, or have no training in modern palliative care, or cannot readily access and prescribe opioids, then terminal care can often be unsatisfactory. Similarly if family carers have not be taught how to care for someone so gravely ill, or there are no home-visiting nurses trained in palliative care, it can be difficult to ensure that dying is peaceful and dignified.

This section addresses some of the issues of caring for the terminally ill in their homes in the hope that readers will adapt its contents to their local or national situation. There are many models of care.  None is perfect for all situations.

Models of Community Palliative Care Services

There are three models in common use and many modifications of each

This assists GPs and community nurses who invite the advisory team to visit and advice on the care of patients at home.  The advisory team consists of a palliative medicine physician and a palliative care community nurse (and can usually call on the services of a social worker, and allied health professionals in the hospice / palliative care service).  Their role is entirely advisory, prescriptions being written by the GP, the practical nursing being done by the community nurse.

The benefits of such a service are that the patient (and often some relatives) remains under the care of doctors and nurses they know well; there is no threat to the authority or autonomy of the GP and community nurses who may be encouraged and enabled to provide better palliative care for future patients. The advisory team, usually based in a palliative care unit, facilitate admission there if needs be, and coordinate consultations and investigations in other units. There is evidence that such services enable more patients to remain at home longer and they may enable more to die at home (if they are called in early enough)

If, as is recommended, the service operates within a clearly defined area with modest distances to travel a single nurse can usually be involved with 16-20 patients at any one time, seeing each 2-3 times / week and often telephoning frequently and regularly. The average time each patient is under care averages 2-3 months for cancer patients but double that for cardiac, respiratory and some patients with neurological disorders.

The “success” or “effectiveness” of such a service largely depends on:

This is most appropriate where there are no other nurses working with patients in their own homes.  Nurses, specially trained in palliative as well as community nursing, provide all the day-to-day, round-the-clock nursing a terminally ill patient needs, and demonstrate basic nursing care to the relatives. They may visit once or many times each day, depending on needs; often supplying equipment on loan from the palliative care service.

Excellent as this service can be it is expensive to operate (salaries, equipment and transport costs), and dependent on the cooperation and understanding of sympathetic GPs who may not know much about palliative care and the nursing needs of their patients. Without the cooperation of a knowledgeable GP this can be a lonely and stressful job for the nurse.

Operating in few places in the world this service provides a team of specially trained palliative medicine physicians and nurses who provide all care for the terminally patient in his home. – all diagnosing, further investigations, prescribing, nursing care, family support and even such procedures as blood transfusion, paracenteses, some chemotherapy and physiotherapy. Any necessary equipment is loaned from the palliative care service base (which need not have its own in-patient beds).

The benefits are that the patient is guaranteed high quality specialist medical and nursing care round-the-clock in his own home, with his well-supported family around him. Such as service is thought to enable more to die at home if that is what they wish. The disadvantages are the very high cost, the possibility that GPs and community nurses will either be deskilled or not given the opportunity to practice better palliative care. Since they have not been involved in this critical time in the patient’s care they might be less able to give appropriate bereavement care after the death.

Such a service can only be expected to operate successfully and amicably when its involvement does not financially disadvantage the GP when he/she “ hands over” a patient to the service.

Modifications of the above

The palliative care nurse working alone  In places where there are no nursing visiting patients at home this may be the only way to help the terminally ill. However it is far from desirable. The professional loneliness can be very stressful; the nurse may have to work without sympathetic or informed medical support, essential medications or nursing equipment; distances to travel may be great and transport and roads poor. In poorly developed communities there may even be suspicion about the nurse’s work with blame attached when a patient dies.

The palliative care nurse(s) working without any medical support or back-up palliative care beds and professional colleagues   This is seen in many countries where palliative care is in its infancy. The reasons are obvious – there are more nurses available than doctors, they are usually more willing to work in the community, their salaries are lower than those of doctors, they are well received and better understood by unsophisticated villagers than doctors might be.

However, it should be regarded as a short-term model of care provision to be replaced as soon as possible by one of the models described above. The reasons are that

The Community Care Team being expected to provide palliative care to terminally ill patients as well as routine nursing care to patients who do not need palliative care.  This is almost impossible and is to be discouraged for the following reasons:

When nurses are asked to work in this way it usually means that their managers know nothing about palliative care.

Emergencies encountered in community palliative care

Equipment useful ( but not necessarily essential) for community palliative care

What might be regarded as essential in one country might not even be used or available in another. The more sophisticated and affluent a country the more patients and their relatives will expect ‘special’ equipment. In other cultures they will improvise and manage to make a patient feel comfortable and safe in conditions that might seem Spartan and inadequate in the West.

Auditing a Community Palliative Care Service

As with every aspect of a palliative care service it is essential to audit it regularly.  The audit should be a community team responsibility with time  set aside for it, accurate records kept of all discussion at audit meetings.  Theses might be chaired by a senior doctor or nurse or, preferably, by different members of the team in turn

Topics that might usefully be audited include: