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.

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