The care experiences of patients who die in residential hospice: A qualitative analysis of the last three months of life from the views of bereaved caregivers

Abstract

Objective: Despite the increasing prominence of residential hospices as a place of death and that, in many regards, this specialized care represents a gold standard, little is known about the care experience in this setting. Using qualitative survey data, we examined the positive and negative perceptions of care in hospices and in other prior settings.Method: Qualitative comments were extracted from the CaregiverVoice survey completed by bereaved caregivers of decedents who had died in 16 residential hospices in Ontario, Canada. On this survey, caregivers reported what was good and bad about the services provided during the last three months of life as separate open-text questions. A constant-comparison method was employed to derive themes from the responses.Results: A total of 550 caregivers completed the survey, 94% (517) of whom commented on either something good (84%) and/or bad (49%) about the care experience. In addition to residential hospice, the majority of patients represented also received palliative care in the home (69%) or hospital (59%). Overall, most positive statements were about care in hospice (71%), whereas the negative statements tended to refer to other settings (81%). The hospice experience was found to exemplify care that was compassionate and holistic, in a comforting environment, offered by providers who were personable, dedicated, and informative. These humanistic qualities of care and the extent of support were generally seen to be lacking from the other settings.Significance of results: Our examination of the good and bad aspects of palliative care received is unique in qualitatively exploring palliative care experiences across multiple settings, and specifically that in hospices. Investigation of these perspectives affirmed the elements of care that dying patients and their family caregivers most value and that the hospices were largely effective at addressing. These findings highlight the need for reinforcing these qualities in other end-of-life settings to create comforting and supportive environments.

A Review of the Essential Components of Quality Palliative Care in the Home

“…Furthermore, four of the studies represent either perceptions or interventions from Canada that may not have broad applicability to different healthcare systems. 33,[35][36][37][38] However, the themes in the original studies were found to correspond to similar studies from other countries, which also share similarities with the systematic review of international programs included in the synthesis. 28,41,42 For example, a multisetting study in France of the specified elements of palliative care important to patients, caregivers, and providers, found four broad critical dimensions that largely correspond to our essential elements: comprehensive support; management of pain and other symptoms; involvement of families, including clear communication; and the care provided to the imminently dying person, including respecting patient preferences.…”

“…47 Finally, each of the studies we reviewed has its own inherent limitations, previously described in its respective publication. 28,33,[35][36][37][38]…”

“…Qualitative comments were extracted from the Car-egiverVoice Survey completed by 628 bereaved caregivers of decedents who received homecare in Ontario. 35,36 On this survey, caregivers reported what was good and bad about the care provided in the last three months of life, as well as what they would maintain or change about these services. Data were collected between September 2012 and October 2015.…”

A gap between the philosophy and the practice of palliative healthcare: sociological perspectives on the practice of nurses in specialised palliative homecare

“…They show that palliative care in the community gives patients and their families higher quality of life and care. In addition, it is less expensive than the traditional combination of homecare and hospital care as a result of decreasing the number of hospital admissions, shortening the length of hospital stays, and decreasing the frequency of emergency room consultations (Bainbridge et al 2017;Brereton et al 2017;Gomes et al 2013;Seow et al 2019). This article focuses on nurses and their work in specialised palliative homecare in respect of the philosophy of palliative care.…”

"Jeg gråter noen tårer hver dag". En fenomenologisk studie av hjemmeboende kreftpasienters beskrivelse av deres livvsituasjon i palliativ fase

“…Tidligere studier har også vist at religion kan spille en viktig rolle for mennesker i den palliative fasen (Willig & Wirth, 2018). Den psykososiale omsorgen har vist seg å vaere viktig (Bainbridge, Giruparajah, Zou & Seow, 2017). Omsorgsfulle og støttende omgivelser for pasienten og pårørende er viktig i hjemmebasert palliativ omsorg og betydningsfullt både for samfunnet, for helsepersonell, for pårørende og for pasienten (Akiyama, Hirai, Takebayashi, Morita, Miyashita, Takeuchi, Yamagishi, Kinoshita, Shirahige & Eguchi, 2016).…”