The quality of death and dying of patients under at home palliative care, evaluated by family and friends of the patient

Abstract

INTRODUCTION: In Poland, there are no studies on the quality of dying and the moment of death. Studies described in the literature involve mostly the quality of life, care and treatment. Results of public surveys show that people have a lot of expectations of both the process and the moment of death. People pay attention to more and more widely known phenomenon of “good death and quality of dying”, especially in patients whose prognosis is not positive and the causative treatment process was terminated. The main objective of the work was to research the quality of the process of dying, and the moment of death within patients in terminal state, that were under free, at-home palliative care.

MATERIAL AND METHODS: Study material was gathered with a validated, translated into polish language, anonymous sheet QODD — The Quality of Dying and Death. The group of recipients are families and friends who took care of a dying patient, who was taken care of by a Home Hospice Centre of the Congregation of Marian Fathers in Warsaw. Research material was being gathered since the beginning of 2016–2018. The original QODD questionnaire consists of 31 questions, although modified versions with 17 questions exist. The questionnaire with 31 questions was used in the research.

RESULTS: 150 questionnaires were collected (150 deceased people). The vast majority, i.e. 78 (52%) of the group were women, the remaining percentage of 72 (48%) were men. The patients very often controlled the situation they were in, were able to independently consume a meal. In most cases they did not feel dyspnoea, which is a measurable indicator of symptom control and improves the quality of life. Very frequently the patients were not at peace with death, but in most cases, they did not feel fear. Very frequently spent time with spouses, close ones and children. In most cases, the patients did not want to talk about the funeral ceremony but mostly they got to say goodbye to their loved ones. In most cases the patients never felt the need to hurry the process of death, but they also did not want to use life-supporting options. Regardless of their awareness of death the patients still had a purpose in life.

CONCLUSIONS: There are a lot of advantages coming from the research. They can be separated into two areas: Medical: improving the quality of life, ability to contract benefits as a result of an evaluation of the care process in at-home palliative care. Research: comparison of the quality of dying in patients of at-home palliative care with stationary care, comparison of individual providers among each other, researching the quality of death within various illnesses, researching the quality of death and dying in children.