The Last Word: Family Members’ Descriptions of End-of-Life Care in Long-Term Care Facilities

Abstract

I A postal survey was used to collect data from family members of deceased residents of six long-term care (lTC) facilities in order to explore endof-life (EOl) care using the Family Perception of Care Scale. This article reports on the results of thematic analysis of family member comments provided while completing the survey. Family comments fell into two themes: 1) appreciation for Care and 2) concerns with care. The appreciation for care theme included the following subthemes: psychosocial support, family care, and spiritual care. The concerns with care theme included the subthemes: physical care, staffing levels, staff knowledge, physician availability, communication, and physical environment. This study identified the need for improvement in EOl care skills among LTC staff and attending physicians. As such, there is a need to implement continuing education to address these issues. Resume I Nous avons peste un questionnaire aux families dont un des membres decede etait heberge dans un des six hOpitaux de soins de longue duree, afin de connaitre leur opinion sur la quallte des soins de vie selon l'Echelle de Perception familiale des soins. Cet article rapporte les resultats de I'analyse thematlque des commentaires emis par les families dans Ie questionnaire. Ces commentaires tombaient sous deux categories: 1) evaluation des soins 2) la quaiite des soins. le premier theme comprenait les sous-cateqorles suivantes: aide psychosociale, besoins des families et pastorale et soins spirituels. le theme traitant de la qualite des soins avait pour soustheme: les soins physiques, Ie manque de personnel, les connaissances du personnel, la disponibilite des rnedeclns, les communications et I'environnement du malade. Cette etude a identifie la necesslte d'arnellorer les connaissances en soins de fin de vie chez Ie personnel et les rnedeclns dans une institution de soins de longue duree. En fait, iI ressort qu'il faudra instaurer des cours de formation continue pour repondre aces preoccupations.

End-of-life expectations and experiences among nursing home patients and their relatives—A synthesis of qualitative studies

“…When professionals failed to recognize symptoms, needs and illness trajectories, communication opportunities with patient and family were missed [32]. Insufficient staff or lack of trained staff made this more stressful [30]. The guardian of a 93-year-old woman with chronic obstructive pulmonary disease was frustrated by this experience:…”

“…Questions about hospitalization were sometimes accompanied by considerations on the nursing home's capability to facilitate the person's dying process [31]. Relatives expressed puzzlement and anger about the absence of the doctor and the lack of communication between the nursing staff and the doctor [27,30]. A family member talked about the following experience:…”

“…Assessing the risks and benefits of treatment options and considering the illness trajectory was difficult for the family, and making decisions ''in the heat of the moment'' was painful [20,24,31]. Nevertheless, they expected doctors and other staff to recognize their needs for guidance and to communicate information in a timely and compassionate manner [24,26,28,30]. When health personnel failed to share information, family members felt abandoned in the decision-making process.…”

“…Much time and energy was spent trying to summon (the physician).'' [30] Lack of information and understanding of the illness trajectory could cause uncertainty among relatives, and relatives could have difficulty understanding the dying process [30]. Caron et al [20] describe ''the uncertainty phase'', when the condition of the patient is not yet defined as dying but the quality of life is difficult to assess.…”

“…This meta-ethnography is based on findings from 14 primary studies undertaken in the United States (10), Canada (2), Sweden (1) and Norway (1) between 1999 and 2011 (Table 2) [20][21][22][23][24][25][26][27][28][29][30][31][32][33].…”