Presence, communication and treatment of fatigue and pain complaints in incurable cancer patients.

OBJECTIVE: This study describes the experiences of fatigue and pain in incurable cancer patients and the treatment they receive. METHODS: Patients were recruited via medical specialists from hospitals in the South and Southwest of the Netherlands. Hundred and twenty-five incurable cancer patients filled out a written questionnaire and were also interviewed at home. RESULTS: Ninety percent reported to suffer from fatigue and 48% had pain. Forty-five percent had discussed fatigue with a healthcare professional and 55% had discussed pain. Fifteen percent reported to receive medical treatment for their fatigue and 29% received pain treatment. Treatment for fatigue and pain treatment had been recently adjusted in 4% of the patients with fatigue complaints and 21% of the patients with pain complaints. CONCLUSION: Although fatigue is a more common problem than pain in patients with incurable cancer, less attention in the care is paid to fatigue and its treatment than to pain. PRACTICE IMPLICATIONS: Fatigue deserves more attention in the care policy for incurable cancer patients and more research should be focused on interventions to address fatigue in this group of cancer patients.

Using the LCP: bereaved relatives' assessments of communication and bereavement.

The Liverpool Care Pathway (LCP) is aimed at improving care and communication in the dying phase. The authors studied whether use of the LCP affects relatives' retrospective evaluation of communication and their level of bereavement. An intervention study was conducted. During the baseline period, usual care was provided to dying patients. During the intervention period, the LCP was used for 79% of the patients. In total, bereaved relatives filled in a questionnaire for 57% of the patients, on average 4 months after death. In the intervention period, relatives had lower bereavement levels when compared with relatives in the baseline period (P = .01). Communication was evaluated similarly for both periods. We conclude that LCP use during the dying phase seems to moderately contribute to lower levels of bereavement in relatives.

The effect of the Liverpool Care Pathway for the dying: a multi-centre study.

We studied the effect of the Liverpool Care Pathway (LCP) on the documentation of care, symptom burden and communication in three health care settings. Between November 2003 and February 2005 (baseline period), the care was provided as usual. Between February 2005 and February 2006 (intervention period), the LCP was used for all patients for whom the dying phase had started. After death of the patient, a nurse and a relative filled in a questionnaire. In the baseline period, 219 nurses and 130 relatives filled in a questionnaire for 220 deceased patients. In the intervention period, 253 nurses and 139 relatives filled in a questionnaire for 255 deceased patients. The LCP was used for 197 of them. In the intervention period, the documentation of care was significantly more comprehensive compared with the baseline period, whereas the average total symptom burden was significantly lower in the intervention period. LCP use contributes to the quality of documentation and symptom control.

Health state utilities: a framework for studying the gap between the imagined and the real.

OBJECTIVES: Health state utilities play an important role in decision analysis and cost-utility analysis. The question whose utilities to use at various levels of health-care decision-making has been subject of considerable debate. The observation that patients often value their own health, but also other health states, higher than members of the general public raises the question what underlies such differences? Is it an artifact of the valuation methods? Is it adaptation versus poor anticipated adaptation? This article describes a framework for the understanding and study of potential mechanisms that play a role in health state valuation. It aims at connecting research from within different fields so that cross-fertilization of ideas may occur. METHODS: The framework is based on stimulus response models from social judgment theory. For each phase, from stimulus, through information interpretation and integration, to judgment, and, finally, to response, we provide evidence of factors and processes that may lead to different utilities in patients and healthy subjects. RESULTS: Examples of factors and processes described are the lack of scope of scenarios in the stimulus phase, and appraisal processes and framing effects in the information interpretation phase. Factors that play a role in the judgment phase are, for example, heuristics and biases, adaptation, and comparison processes. Some mechanisms related to the response phase are end aversion bias, probability distortion, and noncompensatory decision-making. CONCLUSIONS: The framework serves to explain many of the differences in valuations between respondent groups. We discuss some of the findings as they relate to the field of response shift research. We propose issues for discussion in the field, and suggestions for improvement of the process of utility assessment.

Patient evaluation of end-of-life care.

The Dutch health care system is characterized by a strong emphasis on primary care. To get insight into the strengths and gaps in end-of-life care in the Netherlands, data are needed about use and patient evaluation of end-of-life care. We assessed the experiences of patients with end-of-life care during the last months of life. We followed 128 patients with incurable lung, breast, ovarian, colorectal or prostate cancer. At inclusion they were interviewed personally at home. During follow-up, every 6 months, we asked them to fill out a questionnaire on the end-of-life care they had received. One-hundred of them died during the research period. Eighty-seven of the deceased patients were able to fill out a questionnaire in the last 6 months of their lives. They reported that, on average, 4.2 disciplines were involved in their care. Most patients indicated to be satisfied with the care offered by their caregivers. Problems in end-of-life care concerned communication, difficulties in coordination, accessibility of end-of-life care and responding quickly to acute problems. We conclude that comprehensive and interdisciplinary end-of-life care may address patients' needs, but that it simultaneously is a challenge to optimal communication among disciplines and between caregivers and the patient.

Dying at home or in an institution: perspectives of Dutch physicians and bereaved relatives.

INTRODUCTION: Previous studies have shown that most people prefer to die at their own home. We investigated whether physicians or bereaved relatives in retrospect differently appreciate the dying of patients in an institution or at home. MATERIALS AND METHODS: Of 128 patients with incurable cancer who were followed in the last phase of their lives, 103 passed away during follow-up. After death, physicians filled out a written questionnaire for 102 of these patients, and 63 bereaved relatives were personally interviewed. RESULTS: Of 103 patients, 49 died in an institution (mostly a hospital), and 54 died at home (or in two cases in a home-like situation). Patients who had been living with a partner relatively often died at home. Bereaved relatives knew of the patient's wish to die at home in 25 out of 63 cases; 20 of these patients actually died at home. Thirty-one patients had no known preference concerning their place of dying. Most symptoms and the care provided to address them were equally prevalent in patients dying in an institution and patients dying at home. Bereaved relatives were in general quite satisfied about the provision of medical and nursing care in both settings. CONCLUSION: We conclude that most patients' preferences concerning the place of dying can be met. In about half of all cases, patients do not seem to have a clear preference concerning their place of dying, which is apparently not a major concern for many people. We found no indication that dying in an institution or at home involves major differences in the process and quality of dying.