Family Perceptions of End-of-Life Care in Long-Term Care Facilities

Abstract

The study examined the utility of the Family Perception of Care Scale (FPCS), which consists of four subscales: resident care, family support, communication, and rooming. This instrument was developed for the purposes of this study. Overall, family members were satisfied with end-of-life care. Satisfaction did not have a statistically significant relationship to family and resident characteristics. Survey questions with the highest number of low satisfaction ratings included staffing levels, updating families and involving them in care planning, and decision making. Family members considered pain control an important priority, followed by comfort care that included caring for a family member with dignity and sensitivity. Family members also valued it when staff were able to inform them that the death of their family member was near. Place of death was significantly associated with satisfaction, family members being more satisfied with end-of-life care when their family member died in the LTC facility as opposed to in hospital. Resume I Cette etude avait pour objectif d'evaluer I'utilite de l'Echelle de perception des soins de la famille laquelle comprend quatre sous-echetles portant sur les soins en institution de longue duree, Ie soutien de la famille, les communications et Ie lieu ou Ie patient etalt soigne. Cette echelle a ete developpee uniquement aux fins de cette etude. Dans I'ensemble les families etalent satisfaites des solns de fin de vie qui avaient ete procures aux leurs. Ce degre de satisfaction n'avait aucun lien statistiquement significatif avec les caracteristlques propres ala famille et au resident. Dans cette etude, les questions ayant obtenu Ie plus grand nombre de reponses peu satisfaisantes avaient trait aux differents membres du personnel, a I'information transmise aux families, a la participation de la famille aux soins et a la prise de decisions. Les membres des families conslderaient Ie controls de la douleur comme etant la plus importante prlorite, suivi par la suita du confort du malade, et enfin de la dignite et de la senslblllte a apporter dans les relations avec les membres de la famille. Egalement d'importance l:1tait Ie fait que Ie personnel soignant puisse etre capable de prevonlr la famille lorsque la mort etait proche. L'endroit ou la personne est decedee etait un autre facteur de satisfaction, puisque les families etaient plus satisfaites lorsque leurs proches etalent morts dans une institution de soins prolonqes que dans un h6pital.

Autonomy at the end of life: life-prolonging treatment in nursing homes—relatives’ role in the decision-making process

“…An admission conversation includes an initial assessment of the patient’s competence to give consent, and documentation of preferences regarding any hospitalisation, life-prolonging medical treatment and different nutritional measures 24 25 26. Furthermore, this conversation can be viewed as part of the care for relatives, when their requirements for knowledge and information about the end of life are charted and met 27 28 29 30 31…”

“…Healthcare staff’s lack of concern about the patient’s wishes and the relatives’ role in this context represents a threat to proper treatment and care. When relatives are unprepared for approaching death, conflicts and intense demands for active life-prolonging treatment arise 28 36. In this process the patient is not the objective of the treatment but becomes a medium in inappropriate communication and is forced to undergo undesired treatment; ie, more than half the dying patients in the study were hospitalised—several as a result of disagreement between relatives and the physician 9 37 38…”

Japan's policy of promoting end-of-life care in nursing homes: Impact on facility and resident characteristics associated with the site of death

“…Among bereaved family members, transfers to hospitals at EOL have been reported to result in less satisfaction [27]. This tendency is likely to be more so in Japan because the quality of nursing home care is generally perceived to be of high [28].…”

The last phase of life with dementia in Swiss nursing homes: the study protocol of the longitudinal and prospective ZULIDAD study

“…Wellbeing PN = Health status, wellbeing (WHO-5), quality of life. Work = Work satisfaction, work load, work experiences, qualification Abbreviations : RAD resident with advanced dementia, RAI-MDS resident assessment instrument – minimum data set, REL relative, BL baseline questionnaire, 3 M three-monthly questionnaire, 6 M six-monthly RAI-MDS, PM post mortem questionnaire, QUALID quality of life in late-stage dementia scale [24], BISAD Observational instrument to assess pain in dementia [23], MSSE mini suffering state examination [22], EOLD-SM/ -SWC/ -CAD end-of-life care in dementia – symptom management/ -satisfaction with care/ -comfort assessment in dying [21], QOD-LTC quality of dying in long-term care [38], PADD preferences about dying and death [39], QODD quality of dying and death (corresponds with PADD) [40], FPCS family perception of care scale [41], DSI decision satisfaction inventory [33], WHO-5 the WHO-five well-being index [42] a newly translated into German, b applied in CASCADE study, c applied in DEOLD study, d applied in the “Dying Well” study…”