Evaluation and ethical review of a tool to explore patient preferences for information and involvement in decision making.

AIM: To improve clinical and ethical understanding of patient preferences for information and involvement in decision making. OBJECTIVES: To develop and evaluate a clinical tool to elicit these preferences and to consider the ethical issues raised. DESIGN: A before and after study. SETTING: Three UK hospices. PARTICIPANTS: Patients with advanced life-threatening illnesses and their doctors. INTERVENTION: Questionnaire on information and decision-making preferences. MAIN OUTCOME MEASURES: Patient-based outcome measures were satisfaction with the amount of information given, with the way information was given, with family or carer information, and confidence about future decision making. Doctor-based outcome measures were confidence in matching information to patient preference, matching family or carer communication to patient preference, knowing patient preferences and matching future decision making with patient preference. RESULTS: Of 336 admissions, 101 patients (mean age 67.3 years, 47.5% men) completed the study (control, n = 40; intervention, n = 61). Patient satisfaction with the way information was given (chi2 = 6.38, df = 2, p = 0.041) and family communication (chi2 = 14.65, df = 2, p < 0.001) improved after introduction of the tool. Doctor confidence improved across all outcome measures (all p values < 0.001). CONCLUSIONS: Patient satisfaction and doctor confidence were improved by administering the questionnaire, but complex ethical issues were raised by implementing and applying this research. The balance of ethical considerations were changed by advanced life-threatening illness, because there is increased risk of harm through delivery of information discordant with the patient's own preferences. The importance of truly understanding patient preferences towards the end of life is highlighted by this study.

Pruritus in cancer patients.

Pruritus is an uncommon symptom in cancer patients but can often be difficult to treat. The pathogenesis is complex and is not fully understood although there is evidence of involvement of a number of mediators from which treatment options are developing. In cancer patients pruritus may be directly related to the cancer, indirectly related (e.g. cholestasis) or associated with treatment. It is not always possible to treat the underlying cause of the pruritus in these patients, or desirable to stop treatments that may contribute and in these cases we must address the pruritus itself. The treatment of pruritus is a developing area, and helpful research is slowly emerging. The evidence base is not extensive but some high quality studies exist. This short paper briefly discusses the pathogenesis, causes, effects and treatment options for pruritus in cancer patients.

Opioid use in last week of life and implications for end-of-life decision-making.

This study was prompted by public and professional concern that the use of opioids for symptom control might shorten life. We retrospectively analysed the pattern of opioid use in the last week of life in 238 consecutive patients who died in a palliative care unit. Median doses of opioid were low (26.4 mg) in the last 24 h of life and patients who received opioid increases at the end of life did not show shorter survival than those who received no increases. The doctrine of double effect therefore need not be invoked to provide symptom control at the end of life.

A survey of nursing and medical staff views on the use of cardiopulmonary resuscitation in the hospice.

Research evidence suggests that cardiopulmonary resuscitation (CPR) would be indicated in very few hospice patients. However, with the increasing access and expansion of specialist palliative care services the question of CPR is becoming more important. In order to develop a policy in our unit we felt it was important to assess the understanding, attitudes and experience of the health care professionals involved. A semi-structured questionnaire regarding CPR issues, including case scenarios, was distributed to doctors and registered nurses in a palliative care unit. Thirty-seven (80%) of the questionnaires were returned. Ten per cent of respondents identified patients for whom they felt CPR would have been indicated in the event of an unexpected cardiac arrest. Thirty-two per cent could foresee the number of patients in this category increasing in the future. The majority of respondents indicated that CPR should be discussed in certain cases, however 86% had never done so. The success rate of CPR was frequently overestimated. Some respondents felt vulnerable as there was no existing written policy. Factors thought important in making decisions regarding CPR orders included: prognosis; patient's wishes; quality of life; and legal issues. CPR in palliative care units raises many practical and ethical concerns. Our survey shows that staff are aware of the small, but increasing, need for its consideration in certain cases. There was a wide range of views regarding the role of CPR with an overestimation of the chances of success and concerns regarding discussion of the issue with patients. When introducing a CPR policy in a palliative care unit, adequate education and a framework for decision making is required.