The following characteristics are those traditionally used to refer to a community hospice setting, however, many may be applicable for care in other settings.
The comfort of the patient is the primary concern. Diagnosis and pathology are important but primarily for understanding the basis of symptoms and how to relieve them, and for assessing prognosis.
The patient is seen as an integral part of a larger unit, which is the network of family and friends. In crisis situations, family dynamics are often strained. One of the tasks of hospice team members is to distinguish between problems which are clearly those for the patient, and others which may stem from discomforts being experienced by other members of the family. Family conferences are often very valuable in clarifying such tensions.
Care attends to the physical, emotional and spiritual needs of the patient and family. It addresses fear and anger as well as pain, recognising the emotional associations of physical distress. It recognises the importance of the meaning and significance which the individual attaches to serious illness and death. The personalities of care providers and simple measures which enhance comfort are potentially as therapeutic as powerful medications.
Palliative care aims to attend to patient and family needs throughout the experience of terminal illness, wherever the care is delivered and right through into the bereavement period.
There are many individuals and agencies providing care for the terminally ill, now as they always have done. They include specialists, general practitioners, visiting nurses, domiciliary services, hospitals and nursing homes, self-help groups, clergy, charitable organisations, families and friends. A palliative care program aims to bring these valuable services into a coordinated network of care, so that there are minimal gaps and deficiencies in the care of the dying individual.
Because so many persons can be important in helping the resident who is dying, it is important for each to recognise their role, and the functions appropriate to the others. Effective communication among team members and respect for each other’s skills is basic.
7. Regular Review
The situation of a person who is dying may change quickly: a regime providing comfort today may be inadequate tomorrow. Assessment of comfort and of therapy should be carried out often and regularly. For example, as weight decreases or organ function deteriorates medications may need to be reviewed.
8. No Right Answer
It follows that there is no universally correct response to resident and family discomfort. Much depends on the expectations and hopes of those affected. Appropriate intervention may take many forms.
Palliative care tries to control the symptoms that have made dying unpleasant in the past. Dying is an inevitable part of being alive and is therefore to be accepted as part of the natural pattern of life. The process of dying, however, can be influenced by our care and our preparedness to involve the resident and ‘family’ in decisions and in the care.