Derek Doyle, OBE, MD
This section will look at services caring for severe ill patients at the end of life in their own homes, the home of relatives, or care homes for the frail or aged.
Strong evidence from many countries suggests that with some exceptions, most people say that when they come to the end of their lives, they want to remain at home if 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.
Some countries have well established primary care services staffed by general practitioners or 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 visits their village every few weeks at best, any acute illness necessitating them being taken to a distant hospital’s Accident and Emergency Department.
If the doctors who care for people at home seldom make house visits, or have no training in palliative care, or cannot readily access and prescribe opioids, then end-of-life care is usually unsatisfactory.
Similarly, if family carers have not been 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 severe ill or dying 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 of Home Care/Community Palliative Care Services (CPCS) 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 patient (and often some relatives) remains under the care of doctors and nurses they know well but, at the same time, they are getting specialist advice. Additionally, there is no threat to the authority or autonomy of the GP and community nurses who, hopefully, will be encouraged and enabled to provide better palliative care for future patients.
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:
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 patient in his home. With following tasks: 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:
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.
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 care a palliative 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.
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:
In some countries The Community Palliative Care Team is expected to provide palliative care to serious 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 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:
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 a patient can stay at home and receive excellent palliative care there depends as much on the relatives as on all the professionals involved.