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Maintaining false hope may result in prolonged curative aggressive treatments until the very last stage of life. In this study, we sought to explore how people think that realistic and hopeful information should best be combined in physician–patient communications at the end of life.
During a period of 15 days, participants of five online focus groups (OFGs) could log in onto a closed discussion site and offer responses to several topics. A variety of people participated: patients, older people, relatives, and healthcare professionals with and without a Muslim background. Participants with a Muslim background constituted a separate group, because previous research indicated that they might have distinct views on good end-of-life care and communication. Transcripts were analyzed following the principles of thematic analysis.
Participants from all focus groups preferred that physicians provide realistic information in an empathic way, stating that the patient would never be left on his own and that withholding curative treatment was not equal to withholding care, explicitly asking how the patient could be helped during the time remaining, and involving other professionals in the care process and communications. As such, physicians could support patients' transition from “hope for a cure” to “hope for a good death.” Muslims specified the way they wished to receive realistic information: first from a relative, and not by using the term “incurable illness,” but rather by informing the patient that they had no remaining curative treatments available.
Significance of results:
Realism and hope are not necessarily mutually exclusive and can be combined when providing realistic information in a delicate and culturally sensitive way. This study provides suggestions on how physicians can do so. Communication skills training as well as anchoring knowledge of the diversity of cultural and religious views into physicians' education could improve end-of-life communication.
People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision.
To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations.
Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable.
Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a “palliative” label versus the benefits of applying palliative care early.
Introduction: Although in most developed countries the use of restraints is regulated and restricted by law, the concept of restraint in nursing home care remains ambiguous. This study aims to explore how care professionals and family members of nursing home residents with dementia in the Netherlands experience and define the concept of restraint.
Methods: Individual interviews were held with relatives (n = 7) and key persons (n = 9) in seven nursing homes. We also conducted eight focus group discussions with nursing home staff. In addition, a structured questionnaire was administered to the nurses of participating nursing homes.
Results: In the questionnaire, over 80% of the respondents indicated considering “fixation” (e.g. use of belts) as a restraint and 50 to 70% of the respondents regarded other physical interventions, such as geriatric chairs and bedrails, as restraints. The interviews and focus group discussions show that the residents' perception of the intervention, the staff's intention behind the intervention and concerns of privacy are the criteria used by the respondents in defining an intervention as a restraint.
Conclusions: When trying to diminish restraint use, it is important to be aware of the “local logic” of care practice and to take into account the fact that, for staff and relatives, an intervention is only regarded as a restraint when it is bothering a resident or when an intervention is used for the sole purpose of restricting freedom and/or when interventions invade the privacy of a resident.
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