Communication between Physicians and Family Caregivers about Care at the End of Life: When Do Discussions Occur and What Is Said?

Cherlin, Emily; Fried, Terri R.; Prigerson, Holly G.; Schulman‐Green, Dena; Johnson-Hürzeler, Rosemary; Bradley, Elizabeth H.

doi:10.1089/jpm.2005.8.1176

Cited by 219 publications

(198 citation statements)

References 21 publications

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“…This finding is aligned with previous research linking family caregiving experiences to adjustment (28). Research supports the need for improvements in caregiver-health professional communication to better prepare caregivers for the death (29)(30)(31)(32). Herbert and colleagues(1) proposed a framework for end-of-life conversations that argues for preparedness for the death of a loved as an important contributor to caregiver well-being and bereavement outcomes.…”

Section: Implications For Health Professionals and Servicessupporting

confidence: 78%

Transitioning From Caregiving to Widowhood

DiGiacomo

Lewis

Nolan

et al. 2013

Journal of Pain and Symptom Management

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ContextOlder women commonly assume a caregiving role for their husbands at end-of-life and are more vulnerable to poorer health, wellbeing, and social and economic challenges. ObjectivesThe aim of this study was to ascertain older women's experiences of spousal caregiving at endof-life and the ways in which this experience impacts on the transition to widowhood. Methods:Longitudinal in-depth semi-structured interviews were conducted with older women three times over a one year period following the death of their husbands. This report focuses on the initial interviews that examined the transition from caregiving to widowhood. Transcripts were analysed using Interpretive Phenomenological Analysis methods. Participants were community-dwelling women over the age of 65 who had recently been caregivers for their husbands who died within the past two years.Results: Older women caregivers described their caregiver role as taxing, particularly in light of their own chronic conditions, which they failed to prioritise and address. They did not ask for help in managing their roles and health problems, but quietly endured. Hence, they did not communicate their needs or strains explicitly. The degree of perceived adequacy of communication and interaction with health professionals were important factors impacting on their bereavement. Conclusion:It is imperative for health professionals to appreciate that older women caregivers may need more supportive interaction and information during end-of-life caregiving, they may have expectations of communication, and they may deny or fail to focus on their own health issues. A patient/family/carer-centred approach could negate this oversight and improve outcomes for these women as they transition into widowhood.3

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Section: Implications For Health Professionals and Servicessupporting

confidence: 78%

Transitioning From Caregiving to Widowhood

DiGiacomo

Lewis

Nolan

et al. 2013

Journal of Pain and Symptom Management

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“…Clinicians' discussion of hospice independently increased the likelihood of hospice use (OR=5.3, 95% CI=2. [3][4][5][6][7][8][9][10][11][12][13].…”

Section: Resultsmentioning

confidence: 99%

“…2,[5][6][7] Lack of clinicians' discussion about hospice with the patient and family has been identified as a barrier to hospice use, 8,9 supported by retrospective studies, in which caregivers, asked to recall their conversations with clinicians, frequently report an absence of communication about hospice or treatment options. 4,10,11 Although one small study retrospectively estimated that the majority of persons offered hospice by their clinicians utilized this service, there has been no prospective evaluation of the relationship between hospice discussion and use. Regardless of its effects on utilization, the discussion about the availability of hospice services itself is important as a means of communicating end-of-life options and guiding the patient's transition from being seriously ill to dying.…”

Section: Introductionmentioning

confidence: 99%

Understanding their Options: Determinants of Hospice Discussion for Older Persons with Advanced Illness

2009

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“…The variability in desire for information about disease and prognosis, along with the ambivalence of some patients and caregivers, is consistent with prior quantitative research. [23][24][25] Caregivers' observations about their lack of readiness to hear certain information may help to account, at least in part, for prior findings of discrepancies in perceived communication between physicians and patients or caregivers. 24 The strongly expressed desire of certain caregivers and patients not to receive prognostic information highlights the challenge of doing advance care planning among those who are not ready to accept a patient's terminal diagnosis, and it supports the conception of advance care planning as a behavior for which patients and caregivers can be in different stages of change.…”

Section: Discussionmentioning

confidence: 99%

Using the Experiences of Bereaved Caregivers to Inform Patient- and Caregiver-centered Advance Care Planning

2008

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BACKGROUND: Traditional approaches to advance care planning (ACP) have many limitations; new approaches are being developed with the goal of improving end-of-life care. OBJECTIVE:To understand how the end-of-life care experiences of older patients and their caregivers can inform the development of new approaches to ACP. DESIGN:Qualitative cross-sectional study. PARTICIPANTS:Caregivers of community-dwelling persons age ≥ 60 years who died with advanced cancer, chronic obstructive pulmonary disease, or heart failure during follow-up in a longitudinal study. APPROACH:In-depth interviews were conducted 6 months after the patient's death with 64 caregivers.Interviews began with open-ended questions to encourage the caregiver to tell the story of the patient's experiences at the end of life. Additional questions asked about how decisions were made, patient-caregiver, patient-clinician, and caregiver-clinician communication. MAIN RESULTS:Although the experiences recounted by caregivers were highly individual, several common themes emerged from the interviews. These included the following: 1) the lack of availability of treatment options for certain patients, prompting patients and caregivers to consider broader end-of-life issues, 2) changes in preferences at the very end of an illness, 3) variability in patient and caregiver desire for and readiness to hear information about the patient's illness, and 4) difficulties with patientcaregiver communication. DISCUSSION:The experiences of older patients at the end of life and their caregivers support a form of ACP that includes a broader set of issues than treatment decision-making alone, recognizes the dynamic nature of preferences, and focuses on addressing barriers to patient-caregiver communication.KEY WORDS: end-of-life care; caregivers; advance care planning.

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Communication between Physicians and Family Caregivers about Care at the End of Life: When Do Discussions Occur and What Is Said?

Cited by 219 publications

References 21 publications

Transitioning From Caregiving to Widowhood

Transitioning From Caregiving to Widowhood

Understanding their Options: Determinants of Hospice Discussion for Older Persons with Advanced Illness

Using the Experiences of Bereaved Caregivers to Inform Patient- and Caregiver-centered Advance Care Planning

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