This section will look at services caring for terminally ill patients in their own homes or the home of relatives, or care homes for the frail or aged – patients not in a hospital or in-patient palliative care unit.
Strong evidence from many countries suggests that except where houses are too small for anyone with a mortal illness to be cared for there, almost everyone says that when they come to the end of their lives they want to remain at home as long as possible, though not necessarily to die there.
Community care is one area of health care where there are wide variations between one country and another, and even within a country.
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 a perfect model for all situations.
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 staff of the advisory service does not accept invitations to become involved from anyone except the family doctor and community nurse. The advisory team consists of a palliative medicine physician and a community palliative care nurse (and can usually call on the services of a social worker, an occupational therapist and other allied health professionals in the hospice / palliative care service). In many countries the usefulness of the occupational therapist can hardly be exaggerated. They visit homes, assess what modifications area needed, what equipment might help the patient and teach both patient and carers how to make best use of failing faculties.
Their role is entirely advisory, prescriptions being written by the GP and the practical nursing being done by the community nurse not the palliation nurse.
The benefits of such a service are that
The advisory team, usually based in a palliative care unit, facilitates admission there if needs be, and coordinates 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 geographical 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 practical 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 lending equipment from the palliative care service.
Useful 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 palliative care nurse.
This form of Community Palliative Care Service does not offer any form of palliative care education for doctors or nurses. This is a major weakness.
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 ill patient in his home. – confirming the diagnosis, ordering whatever further investigations are needed, prescribing medications, involving home nurses, organising family support and even performing 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 many:
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.
A modification of the above……..
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:
CAUTION - In some countries The Community Palliative Care Team is expected to provide palliative care to terminally ill patients alongside their general work with patients not in need of palliative care. This is almost impossible to do, does not help either group of patients and is to be discouraged because It is usually suggested by managers eager to save money, managers who know little or nothing about palliative care. It is exceedingly stressful for the team members, does not save money and usually results in poor quality palliative care
Much depends on whether or not those caring for a patient at home can deal with the following. If GPs and community nurses do not know how to deal with them, they need a Community Palliative Care Team:
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.
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. These might be chaired by a senior doctor or nurse or, preferably, by different members of the team in turn. Regular feed-back, critical appraisal from GPs and community nurses with whom the team works is essential.
One final observation: Whether or not a patient can stay at home and receive excellent palliative care there depends as much on the relatives as on all the professionals involved.
Recommended reading: Papers by Higginson and Gomes on issues related to palliative care in the community, patients’ wishes and modern trends.