What investigations and procedures do patients in hospices want? Interview based survey of patients and their nurses

Abstract

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 resultsRandomly 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 (figure). 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 (r s = − 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 (r s = − 0.55, P < 0.01), indicating decreasing quality of life with increasing disability. Patients' and nurses' scores on the performance scale agreed strongly ( (unweighted) = 0.81, 95% confidence interval 0.61 to 1.01).

Variations Among Physicians in Hospice Referrals of Patients With Advanced Cancer

“…Teno, personal communication, August 2015). [41][42][43][44][45] This disparity is likely a result of several factors, but may be explained in part by the use of palliative chemotherapy and blood transfusions late in the disease course, a practice that is shown to be effective 46 and desired, 47 but also cost prohibitive for hospice facilities. 48 Further work is required to identify cost-effective solutions to provide quality end-of-life care to these patients.…”

Integrating Palliative Care: A Postmodern Perspective

“…While such advances do represent the medicalization of hospice, 13 this need not be seen as a detriment but as an indication that the ideals of hospice are being incorporated into conventional clinical care. The finding in one survey that hospice patients were more likely to accept medical interventions than their nurses 14 should caution us to keep in mind interventions that could help terminally ill patients and to discuss these openly with patients so that they understand potential benefits and harms.…”

A Staff Dialogue on Do Not Resuscitate Orders: Psychosocial Issues Faced by Patients, Their Families, and Caregivers

“…It is important for the physician to ask the patient his or her wishes and to listen to nurses and social workers, with whom the patient may have established important relationships. One interviewbased study of 23 patients with advanced cancer in hospice care reported that 52% of patients, but no nurses, were in favor of resuscitation [8]. Although opinions can be divergent, most decisions are made by consensus between physicians and the patient, the family or surrogates; major conflicts occur in only 1% of decisions to withhold life-sustaining treatment in incompetent patients [9].…”