What investigations and procedures do patients in hospices want? Interview based survey of patients and their nursesBMJ 1997; 315 doi: https://doi.org/10.1136/bmj.315.7117.1202 (Published 08 November 1997) Cite this as: BMJ 1997;315:1202
- Chantal J N Meystre, senior registrara,
- Neil M J Burley, medical studenta,
- Sam Ahmedzai, professor of palliative medicineb
- a Leicestershire Hospice, Leicester LE3 9QE
- b Section of Palliative Medicine, Department of Surgical and Anaesthetic Sciences, University of Sheffield, Floor K, Royal Hallamshire Hospital, Sheffield S10 2JF
- Correspondence to: Dr Meystre
- Accepted 27 February 1997
Slevin et al reported that patients with cancer were much more likely to opt for chemotherapy with minimal chance of benefit than were their professional carers and people without cancer.1 They also said that attitudes changed dramatically once cancer had been diagnosed. We investigated the attitudes of terminally ill patients in our hospice towards investigations and invasive procedures and compared these with the attitudes of their nurses.
Subjects, methods, and results
Randomly selected inpatients with advanced cancer at our hospice and their key nurses took part in an interview based survey. Patients were asked about 14 procedures of increasing invasiveness. Travelling was mentioned when necessary. The questions were prefaced by: “If we thought it would help us improve your care would you want…?” Procedures ranged from having temperatures taken to having an operation, and the survey culminated in the question, “If your heart stopped unexpectedly would you want to be resuscitated?” Standard descriptions of all the tests and procedures were available.
Responses were rated 0–10 (0=no, definitely not; 5=don't mind; 10=yes, definitely). The European Organisation for Research and Treatment of Cancer's questionnaire was administered to obtain concurrent quality of life data,2 and patients were asked to assess their status on the World Health Organisation performance scale.3 The nurses were asked how appropriate it would be to carry out these 14 investigations or procedures if they were thought necessary for the medical management of their patient. Responses were graded 0–10 (0=inappropriate, 5=no strong feeling either way, and 10=appropriate). They were also asked to assess the patient's status on the WHO performance scale. Non-parametric statistics were used.
Twenty three patients (15 women; median age 67 (range 47-81) years) and 18 nurses completed the questionnaire. No nurse was interviewed more than twice. One patient became distressed during the interview. Patients were consistently more likely to accept investigations and invasive procedures than were nurses (1). The greatest divergence of opinion was in relation to resuscitation: 12 patients but no nurses were in favour of the procedure. Patients' responses about intervention were unrelated to age, quality of life, disease stage, or self rated status on the WHO performance scale. Patients with a worse status on the performance scale were more reluctant to accept blood transfusions (rs=-0.44, P<0.05). The responses about resuscitation were independent of subscale scores for pain and for emotional, cognitive, and physical functioning on the European organisation's questionnaire.2 Patients self assessed status on the performance scale and their score for global quality of life were significantly correlated (rs=-0.55, P<0.01), indicating decreasing quality of life with increasing disability. Patients' and nurses' scores on the performance scale agreed strongly (κ (unweighted)=0.81, 95% confidence interval 0.61 to 1.01).
Even patients who are terminally ill are prepared to accept invasive procedures and treatments more readily than are their nurses. That this is not because nurses misinterpret the clinical state of patients is shown by the agreement in nurses' and patients' scores on the performance scale.
Hill et al found that patients' requests for resuscitation declined with increasing age,4 but in our study acceptance of resuscitation was not related to age, quality of life, or score on the performance scale. Legal advice suggests that if patients request resuscitation it should be provided,5 but whether patients in hospices would benefit from this is doubtful.
Our most important findings are those relating to patients' acceptance of procedures less dramatic than resuscitation. Care must be taken to ensure that the judgments and attitudes of staff are not denying patients the opportunity of simple tests or therapeutic interventions from which they may obtain clinical benefit.
The National Council for Hospice and Specialist Palliative Care Services with the Association for Palliative Medicine of Great Britain and Ireland has recently published guidelines on artificial hydration and cardiopulmonary resuscitation for people who are terminally ill (European Journal of Palliative Care 1997;4(4):124, 125, 126–8 (discussion of guidelines)).
Conflict of interest: None.