Palliative Care



# Introduction
Palliative care is the active total care of patients whose disease is incurable. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families.
Palliative care is a multidisciplinary activity taking place in Britain in a variety of settings?hospital wards under the aegis of symptom control teams, palliative care units, or at home with a specialised team advising the general practitioner and the domiciliary nursing service.
Palliative medicine has recently been recognised as a specialty in the United Kingdom. Specialist medical training is available in centres which are approved for the purpose by the Joint Committee on Higher Medical Training. A requirement of such training is that audit measures are in place. This applies also to specialist nurse training. Since palliative care is a multiprofessional activity, audit must also be multi-professional [bib_ref] Constructive audit, Ford [/bib_ref].
In order to develop and test constructive forms of audit, the Research Unit of the Royal College of Physicians in association with the Association for Palliative Medicine invited a multi-professional group to propose guidelines for good practice in palliative care in specialised inpatient units, and to propose audit measures whereby it might be seen whether that good practice was regularly achieved. The Working Group included representatives from medicine, nursing, social work, psychology, sociology, and a quality assurance consultant. Six background papers had been commissioned before the meeting on particular areas of interest and concern, as indicated by the headings in the text.* Circulation of these before the meeting allowed plenty of time for discussion, during which these guidelines were agreed.

# Background
The characteristics of palliative care have been identified as attention to the whole needs of the individual, and the relief of symptoms whether physical, mental, spiritual or psychosocial. Care extends beyond patients to their families. Common features are bereavement support, and the continuing education and training of professionals and those volunteers who are also deployed in meeting the needs of the patient and his or her family. Emphasis on the quality of life remaining for the individual, good communication between and among patients, families and staff, and strong multi-professional teamwork are also features of palliative care.
Some of the endpoints of palliative care may be difficult to assess in the context of audit. A peaceful or dignified death may mean one thing to patients and families, and yet another to staff. The way in which bad news is conveyed may have a crucial effect not only on the feelings of patients and families, but also on how they cope with dying and death. The Research Unit of the Royal College of Physicians has previously tried to ensure that published guidelines for good practice (egare supported by published scientific evidence of effectiveness. In the case of palliative care, such scientific evidence is harder to find. The guidelines are the product of the experience of a number of colleagues coming from different disciplines concerned with the care of the dying, and reflect the emotional, ethical and practical needs of the patients, their family and of those who work in palliative care units.
These guidelines are to help doctors by providing an analytical framework for the evaluation and treatment of some common clinical problems. They are not intended to replace a doctor's clinical judgement, and are not necessarily the only way in which a particular condition can be managed. They do, however, provide a framework within which audit and review of clinical practice can take place. The guidelines reflect the views of the individual clinicians who attended the workshops.

## Guidelines
Admission to a palliative care unit: the first 24 hours Before admission ? Whenever possible, contact should be made with the patient and/or relatives before admission to reduce fears. The reason for admission should be clearly stated in the case notes. The admission procedure should be documented in a nursing standard and should be explained to new team members.
On admission ? The patient should be examined by a doctor within two hours of arrival.
? After a brief initial assessment of symptoms [bib_ref] Survey of distressing symptoms in dying patients and their families in hospital..., Hockley [/bib_ref] , a medical, nursing and other care plan should be completed, preferably with a doctor and nurse working together for some of the admission procedure. The plan should be recorded in the case records.
After admission ? It is essential that the patient and family have opportunities to express their feelings and needs, and to seek information. The family should be offered a meeting with one or two of the team members.
? The patient will need to be orientated to his or her new environment. He or she should be introduced to the other patients, shown the facilities, and have the routines of the palliative care unit explained. ? The first meal is an opportunity to demonstrate individualised care, and the patient should be asked about his or her special dietary requirements.
?
On the first evening he or she should be introduced personally to the night staff.
?
The patient's symptoms and problems should be reassessed the day after admission. He or she may need to be introduced to other team members.
Quality of the environment in a palliative care unit The Working Group did not consider basic administrative aspects such as the security with which drugs are stored and dispensed, and precautions against fire. The physical environment needs regular assessment by a small group of lay people with a special interest in hospice care, as well as by senior staff working in the hospice. The assessment should include: practical aspects such as the promptness with which the telephone is answered. The staff establishment should be adequate to fulfil the care outlined in these guidelines. A Delphi exercise was conducted between 1986 and 1988 and some standards and guidelines for inpatient units were produced.
The psychosocial environment is also important. Staff should be friendly and efficient and accessible to patients and relatives. They should respond quickly to questions that worry patients or relatives.

## Expectations of the patients receiving care
The clinical and ethical value of including the expectations of patients and caring relatives in auditing palliative care outweighs the disadvantages of imprecise assessment. Recording patients' expectations encourages and indicates clinical perceptiveness. The expectations of patients and their relatives may be inconsistent and affected by emotions and inexperience, but they are often rational and pertinent.
The clinical records relating to identified problems should include the expectations of patients and their relatives and the proposed professional action. Realistic expectations may reinforce or modify management. Expectations causing or threatening distress merit the record of a plan to help the patient or relative to adjust. Unfounded expectations that comfort the patient or his carer should be noted, with proposed actions or inaction. Subsequent records should state if the plans were enacted, and if not, why not. They should also record subsequent cha/iges in expectations.
Communication to the patient and his or her relatives [bib_ref] How to do it: improve the counselling skills of doctors and nurses..., Maguire [/bib_ref] A palliative care unit should have a policy for communicating facts and opinions between professionals.
Traditional measures of successful communication in health care have been concerned with outcomes following information given to the patient, and with patient compliance. Neither of these is appropriate in palliative care as not all patients wish for information. Denial is one mechanism for coping. Informed choice is more important than compliance.
Research concerned with measuring the communication skills of health professionals suggests that much work is needed in this area to improve health care. Effective assessment of the problems of patients and their relatives will lead to care being based on their actual needs rather than those assumed. Patients should be asked whether they feel able to communicate their changing needs.
Successfully addressing the problems identified on admission A recent study has shown that the most severe problems on admission are control of symptoms and family anxiety. Significant improvements in relief of patient symptoms after intervention by a hospice team can be demonstrated by the Support Team Assessment Schedule [bib_ref] Clinical Audit by a palliative care team, Mccarthy [/bib_ref] , but this study showed that family anxiety proved difficult to relieve, and although ratings improved initially, anxiety and other problems recurred at death. The Support Team Assessment Report of a working group Schedule enables team members to examine their Work in more detail and to demonstrate the effectiveness of care.
Are those working in palliative care units able to deliver good care? A palliative care unit should have written policies and procedures which ensure that access is not inadvertently denied to particular groups, eg those requiring admission within 24 hours of referral, or those of lower socio-economic status. A palliative care unit should use some broad measures of patient dependency. Such measures are being piloted in some areas, and are likely to prove to be a helpful tool.
Each palliative care unit should encourage and record the extent of formal and informal staff support and training, the rate of turnover of staff and sickness absence.

## Audit measures
Admission policy 1. Are the different social groups in the catchment area of the hospice or specialised unit reflected proportionately in those admitted?

## 2.
Is there a written policy about admissions, particularly in regard to those requiring urgent admission?
3. Is there a record of the reason for admission? 4.
Is there a record of the waiting time before admission? 5.
Is there a record of the main problems on admission? Clinical management Is there a record of previous problems and how they were treated? 7. Is there a record about the patient's pain, or was a pain chart completed at first assessment?

## 8.
Is there a record of the patient's aims, expectations and objectives for each of his or her main problems? 9. Is there a record of an action plan and its outcome for each of the patient's main problems? [bib_ref] Effectiveness of two palliative support teams, Higginson [/bib_ref] How do we measure whether we have successfully addressed the problems identified on admission? By Irene Higginson f. Are those working in palliative medicine able to deliver good care? By Anne Naysmith