“South Dakota's Dying to Know”: Personal Experiences with End-of-Life Care

Nelson, Margot L.; Schrader, Susan L.; Eidsness, LuAnn M

doi:10.1089/jpm.2009.0062

Cited by 8 publications

(10 citation statements)

References 17 publications

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“…These contribute to the EOL experience, which then is labeled as good or bad. The EOL experience does not end there however, as it extends into after-death experiences and shapes the bereavement process [45,48,50,54]. The results presented here compose a conceptual model that integrates diverse experiences throughout the EOL process.…”

Section: Resultsmentioning

confidence: 99%

“…For family members, that role could extend into healthcare provider or patient advocate. Some fulfilled this specific role because it was the morally appropriate thing to do [45,52,54]. There were also community members and religious or spiritual care providers who offered a certain type of care at EOL [19,49].…”

Section: Resultsmentioning

confidence: 99%

“…For example, “if care was viewed as high quality, participants described a willingness to entrust the dying person’s care to professional caregivers. If they were insecure about the quality of care, trust was lacking and they reported a need to be on guard as the dying person’s advocate” [54] (p. 910). Role clarity was complicated by blurred lines between professional clinical caregiver roles and family caregiver roles, especially when the clinical staff had an expectation/assumption that the family caregiver knew and understood the biomedical nature of EOL processes.…”

Section: Resultsmentioning

confidence: 99%

“…The studies indicate a wide array of communication exchanges and experiences, and what we observed was that with the instances where the family caregiver perceived to be listened to, received kindness, social support and engaged in decision-making with other healthcare participants, the EOL process at that moment was positive [19,48,51,55]. When descriptions of healthcare encounters included a lack of involvement in decision-making, lack of listening, no kindness or empathy, family caregivers were frustrated, upset and had a negative perception of that EOL experience [47,50,52,54,56]. We argue here again that the negative examples due to communication were missed opportunities for a positive experience that can be addressed.…”

Section: Resultsmentioning

confidence: 99%

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Still Searching: A Meta-Synthesis of a Good Death from the Bereaved Family Member Perspective

Tenzek

Depner

2017

Behavioral Sciences

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The concept of a good death continues to receive attention in end-of-life (EOL) scholarship. We sought to continue this line of inquiry related to a good death by conducting a meta-synthesis of published qualitative research studies that examined a good death from the bereaved family member’s perspective. Results of the meta-synthesis included 14 articles with 368 participants. Based on analysis, we present a conceptual model called The Opportunity Model for Presence during the EOL Process. The model is framed in socio-cultural factors, and major themes include EOL process engagement with categories of healthcare participants, communication and practical issues. The second theme, (dis)continuity of care, includes categories of place of care, knowledge of family member dying and moment of death. Both of these themes lead to perceptions of either a good or bad death, which influences the bereavement process. We argue the main contribution of the model is the ability to identify moments throughout the interaction where family members can be present to the EOL process. Recommendations for healthcare participants, including patients, family members and clinical care providers are offered to improve the quality of experience throughout the EOL process and limitations of the study are discussed.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Still Searching: A Meta-Synthesis of a Good Death from the Bereaved Family Member Perspective

Tenzek

Depner

2017

Behavioral Sciences

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“…What do they describe as appropriate care in the last phase of life, and when do they speak of inappropriate care? Studies on patients’ and relatives’ perceptions of care at the end of life have mostly been limited to quality of palliative (cancer) care, identifying important elements of care such as communication, decision making, accessibility of care, symptom control and attention for psychological and social needs [3, 16]. A review showed that patients with and without cancer seem to suffer from similar problems in the last phase of life, [17] even though the trajectories of decline differ [18].…”

Section: Introductionmentioning

confidence: 99%

Appropriate and inappropriate care in the last phase of life: an explorative study among patients and relatives

Bolt¹,

Pasman²,

Willems³

2016

BMC Health Serv Res

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BackgroundMany people are in need of care in the last phase of life. However, the care they receive is not always appropriate. For instance, people can receive overly aggressive treatment or can have limited access to palliative care. The term appropriate care is often used by policy makers, while it is unclear what care recipients consider as appropriate care. This study aims to identify what care patients and relatives perceive as appropriate and as inappropriate in the last phase of life, for patients suffering from different conditions.MethodsWe designed an online survey with open questions. Participants were recruited through organizations for patients, older people and medical professionals. Answers were analysed after data-driven coding. Forty-five patients and 547 relatives described the care they received and described why this care was appropriate or inappropriate.ResultsParticipants described more cases of appropriate care than inappropriate care. The cases of appropriate care were diverse, but all involved care in (one or more of) five dimensions; supportive care, treatment decisions, location, the role of the patient’s wish and communication. Each of these dimensions was frequently described (39-62 %). When care was inappropriate, this mostly involved inappropriate treatment decisions (69 %; especially overtreatment was frequently mentioned), and poor communication (50 %). There was considerable consistency in what was seen as (in)appropriate care across different conditions. However, especially patients suffering from other physical diseases than cancer more often received inappropriate care.ConclusionFrom the perspective of patients and relatives, appropriate care in the last phase of life is a broad concept. Caregivers should be aware of the diversity of care needs in the last phase of life. Especially treatment decisions and communication can be improved.

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