Care and Quality of Life in the Dying Phase: The contribution of the Liverpool Care Pathway for the Dying Patient

This thesis concerns the professional care and the quality of life for dying patients and their relatives in the hospital, the nursing home and the primary care setting. The effect of introducing the Liverpool Care Pathway for the Dying Patient (LCP) on the content of care and the quality of life of the dying patient was studied. The Liverpool Care Pathway for the Dying Patient (LCP) provides care goals to ensure that dying patients and their family receive the best possible comfort care. The LCP has been developed and used in the Marie Curie Hospice, Liverpool since the early 90ties. We applied a pre- and post intervention study in which patient and care characteristics were compared before and after implementation of the LCP. Data were collected after the death of patients. For each deceased patient we asked a nurse, a physician and a bereaved relative to fill in a questionnaire. The patients’ physical symptoms, the content of care to patients and families, as well as some subjective aspects, such as the patients’ psychological symptoms, and spirituality were assessed. Besides, relatives reported on aspects of their own bereavement. The questionnaires were partly based upon existing questionnaires, namely the EORTC QLQ-C30, the Views Of Informal Carers Evaluation of Services questionnaire (VOICES), the Palliative Outcome Scale (POS), and the Leiden Detachment Scale (LDS). Additional questions were developed based upon insights that were gained from former research concerning medical care and decision making in the last phase of life. The research questions concerned the effect of LCP use on 1. the quality of life of patients in the last three days of life, 2. the content of care for patients in the last three days of life, 3. the communication in the last three days of life and the level of bereavement of relatives

Does recognition of the dying phase have an effect on the use of medical interventions?

During the dying phase, patients often receive interventions that are not aimed at promoting their comfort. We investigated how recognition of the dying phase affects the use of interventions by comparing patients for whom the dying phase had been recognized with patients for whom it had not been recognized. We included 489 of 613 patients (80%) who died either in a hospital, nursing home, or primary care setting between November 2003 and February 2006. After the death of patients, nurses filled in questionnaires, and patient records were searched for information about therapeutic and diagnostic interventions applied during the dying phase. Caregivers had recognized the dying phase of 380 patients (78%). The number of patients who had received diagnostic interventions during the last three days of life was significantly lower when the dying phase had been recognized (39% vs. 57%) (p=0.00). Therapeutic interventions were used in similar frequencies in both groups. We conclude that recognition of the dying phase reduces the number of undesirable diagnostic interventions

Awareness of dying: it needs words

The purpose of this research is to study to what extent dying patients are aware of the imminence of death, whether such awareness is associated with patient characteristics, symptoms and acceptance of dying, and whether medical records and nurses' and family caregivers' views on patients' awareness of dying agree. Nurses and family caregivers of 475 deceased patients from three different care settings in the southwest Netherlands were requested to fill out questionnaires. The two groups were asked whether a patient had been aware of the imminence of death. Also, medical records were screened for statements indicating that the patient had been informed of the imminence of death. Nurses completed questionnaires about 472 patients, family caregivers about 280 patients (response 59%). According to the medical records, 51% of patients had been aware of the imminence of death; according to nurses, 58%; according to family caregivers, 62%. Patients who, according to their family caregiver, had been aware of the imminence of death were significantly more often in peace with dying and felt more often that life had been worth living. Inter-rater agreement on patients' awareness Being aware of dying is associated with acceptance of dying, which supports the idea that open communication in the dying phase can contribute to the quality of the dying process. However, views on whether or not patients are aware of the imminence of death diverge between different caregivers. This suggests that communication in the dying phase of patients is open for improvement

End-of-Life Decision Making for Cancer Patients in Different Clinical Settings and the Impact of the LCP

Differences in the general focus of care among hospitals, nursing homes, and homer may affect the adequacy of end-of-lye decision making for the dying. We studied end-of-life decision-making practices for cancer patients who died in each. of these settings and assessed the impact of the Liverpool Care Pathway for the Dying Patient (LCP), a template Jar care in the dying phase. Physicians and relatives of 311 deceased cancer patients completed questionnaires. The LCP was introduced halfway through the study period. During the last three months of life, patients who died in hospital received anticancer therapy and medication to relieve symptoms more often than. those in both other settings. During the last three days of life, patients who died in the hospital or nursing home received more medication than those who died at home. The LCP reduced the extent to which physicians used medication that might have hastened death. Relatives of patients who died in the hospital tended to be least positive about the patient's and their own participation in the decision making. We conclude that cancer patients who die in the hospital are more intensively treated during the last phase of life than. those who die elsewhere. The LCP has an impact on the use of potentially life-shortening medication during the dying phase. Communication about medical decision making tends to be better in the nursing home and at home. J Pain Symptom Manage 2010;39:33-43. (C) 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved