ABSTRACT
CONTEXT: Relatives of patients receiving palliative care are at risk for psychological and physical distress, and their perception of quality of care can influence patients' quality of life. OBJECTIVES: The purpose of this study was to develop and validate the QUALI-PALLI-FAM questionnaire (QUAlity of PALLIative car from FAMilies' perspective) to measure families' perception of and satisfaction with palliative care. METHODS: An exploratory factor analysis was conducted, and we evaluated the questionnaire's internal consistency using Cronbach's alpha, its stability across various strata, and the correlation between the QUALI-PALLI-FAM (factors, total score, and global satisfaction) and the total score of the FAMCARE (FAMily satisfaction with CARE) questionnaire. RESULTS: This multicentric prospective cross-sectional survey was conducted in seven French hospitals, namely, three palliative care units and four standard medical units with a mobile palliative care team. The questionnaire was completed by 170 relatives of patients (more than 90% of patients had advanced cancer). The final questionnaire included 14 items across three domains: organization of care and availability of caregivers, medical information provision, and confidence and involvement of relatives. Internal consistency was good for all subscales (Cronbach's α = 0.74-0.86). Our questionnaire was stable across various strata: age and gender (patients and relatives), Palliative Performance Scale scores, and care settings. The QUALI-PALLI-FAM total score was correlated with the total FAMCARE score. CONCLUSION: The QUALI-PALLI-FAM appears to be a valid, reliable, and well-accepted tool to explore relatives' perception of quality of inpatient palliative care and complements the QUALI-PALLI-PAT questionnaire. Further testing is required in various settings and countries.
Subject(s)
Palliative Care , Quality of Life , Cross-Sectional Studies , Humans , Inpatients , Perception , Prospective Studies , Psychometrics , Reproducibility of Results , Surveys and QuestionnairesABSTRACT
BACKGROUND: Indicators for the quality of palliative care are a priority of caregivers and managers to allow improvement of various care settings and their comparison. The involvement of patients and families is of paramount, although this is rarely achieved in practice. No validated assessment tools are available in French. Simple cultural adaption of existing questionnaires may be insufficient, due to the varying organization of care in different countries. The purpose of this study was to develop and validate a new instrument to measure the quality of palliative care and satisfaction from the patient point of view. METHODS: Results from a qualitative study were used by a multi-professional workgroup to construct an initial set of 42 items exploring six domains. A cross-sectional survey was conducted in seven hospitals, encompassing three care settings: two palliative care units, one palliative care hospital, and four standard medical units with a mobile palliative care team. All items were assessed for acceptability. We conducted exploratory structural analysis using Principal Component Analysis (PCA), and evaluated external validity by comparison against global rating of satisfaction and the MD Anderson Symptom Inventory (MDASI) questionnaire. RESULTS: A total of 214 patients completed the questionnaire. After removing 7 items from the response distribution, PCA identified eight interpretable domains from the 35 final items: availability of caregivers, serenity, quality of information, pain management, caregivers' listening skills, psychosocial and spiritual aspects, possibility to refuse (care or volunteers), and respect for the patient. Internal consistency was good or acceptable for all subscales (Cronbach's α 0.5-0.84), except the last one (0.15). Factorial structure was found globally maintained across subgroups defined by age, sex, Palliative Performance Scale (PPS ≥ 60%, 40-50% and ≤ 30%), and care settings. General satisfaction was inversely correlated with the 2 scores of the MDASI questionnaire: symptoms' severity and impact on life. Each subscale, except "possibility to refuse", correlated with general satisfaction. CONCLUSIONS: Quali-Palli-Pat appears to be a valid, reliable, and well-accepted French tool to explore the quality of care and the satisfaction of palliative care patients. It should be confirmed in a wider sample of care settings. TRIAL REGISTRATION: clinicaltrials.gov NCT02814682 , registration date 28.6.2016.
Subject(s)
Palliative Care/standards , Quality of Health Care , Surveys and Questionnaires/standards , Adolescent , Adult , Aged , Aged, 80 and over , Cross-Sectional Studies , Female , France , Humans , Male , Middle Aged , Outcome Assessment, Health Care , Patient Reported Outcome Measures , Patient Satisfaction , Pilot Projects , Young AdultABSTRACT
New French 2016' Act recognizes 3 new rights for patients at the end of their life: right to dead without futilities, right to have their wishes respected and right to be comfortable in all circumstances. Medical acts must not be continued in an unreasonable way. Futility is defined by useless, disproportionate or without another aim that an artificial life sustaining acts. For patients who cannot tell their wishes, a withdrawing or withholding decision of life sustaining treatments can be taken with a collegiate process. Doctors must always care about patient comfort with palliative care. Artificial hydration and nutrition can be considered as futile. Patients can write advanced directives or design confidence person to attest their wishes if they should be unable to do it. Doctors must respect advanced directives, except in emergency cases or if there are inappropriate. In such cases, the decision not to respect advanced directives must be taken collegially. Sedation is a therapeutic solution to alleviate refractory suffering for patients at the end of life, even if there is a risk to shorten their life, if the aim is to make patient comfortable and if it is the only way to achieve this goal. A specific right to deep and continuous sedation until death is created, only for patients with a short life prognosis (forhours to days). It is an exceptional practice with very strict conditions including a collegiate deliberation including non-medical team members. If they wish, patients at the end of life should be cared at home with comfort treatments if needed. Referent doctor must inform patients about their rights. An initial and continuous formation on this field is required. For every decision, it is important to keep a record in the patient chart. If not, it will be a fault.
Subject(s)
Right to Die/legislation & jurisprudence , Terminal Care/legislation & jurisprudence , France , HumansABSTRACT
At the end of life the pleasure function of alimentation is to be preferred to its nutritive function. Artificial nutrition and hydration in an enteral or parenteral way are artificial life support techniques. Artificial nutrition and hydration are systematically justified for patients in curative phase that require it but not for patients in a terminal or agonal phase. The fear of death from hunger and thirst is not justified. It is more relevant of a symbolic and phantasmic dimension than of an objective reality. The practice of oral care is much more effective than installing an artificial hydration to improve the comfort of a patient at the very end of life. Withdrawing or withholding an artificial nutrition and hydration can prevent an unreasonable obstinacy prohibited by law.
