4 results
“I want to go home”: How location at death influences caregiver well-being in bereavement
- Deborah P. Waldrop, Jacqueline M. McGinley
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- Journal:
- Palliative & Supportive Care / Volume 18 / Issue 6 / December 2020
- Published online by Cambridge University Press:
- 16 March 2020, pp. 691-698
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Objectives
Goal concordant or congruent care involves having expressed wishes upheld. Yet, the preferred location for end-of-life care may be unaddressed. Caregiver–patient congruence between preferred and actual locations of care may influence the quality of life in bereavement. The study aimed to explore how the congruence between caregiver–patient preferred and actual locations of death influenced well-being in bereavement.
MethodsMixed methods were employed. In-depth in-person interviews were conducted with 108 bereaved caregivers of a hospice patient about 4 months after the death. An interview guide was used to collect quantitative and qualitative data: demographics, decision-making, Core Bereavement Items (CBI), Health Related Quality of Life, and perspectives on the end-of-life experiences. Data were analyzed with a convergent mixed methods one-phase process.
ResultsPatient preference–actual location congruence occurred for 53%; caregiver preference–actual location congruence occurred for 74%; caregiver–patient preference and location of death occurred for 48%. Participants who reported some type of incongruence demonstrated higher levels of distress, including more days of being physically and emotionally unwell and more intense bereavement symptoms. The Acute Separation subscale and CBI total scores demonstrated significant differences for participants who experienced incongruence compared with those who did not. Preference location congruence themes emerged: (1) caregiver–patient location congruence, (2) caregiver–patient location incongruence, and (3) location informed bereavement.
ConclusionsCongruence between a dying person's preferred and actual locations at death has been considered good care. There has been little focus on the reciprocity between caregiver–patient wishes. Discussing preferences about the place of end-stage care may not make location congruence possible, but it can foster shared understanding and support for caregivers’ sense of coherence and well-being in bereavement.
Examining family meetings at end of life: The model of practice in a hospice inpatient unit
- Mary Ann Meeker, Deborah P. Waldrop, Jin Young Seo
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- Journal:
- Palliative & Supportive Care / Volume 13 / Issue 5 / October 2015
- Published online by Cambridge University Press:
- 31 October 2014, pp. 1283-1291
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Objective:
Our purpose was to rigorously examine the nature of family meetings as conducted in an inpatient hospice care unit in order to generate an inductive theoretical model.
Method:In this two-phase project, we first interviewed eight members of the interdisciplinary care team who participated in multiple family meetings each week. Interview questions explored why and how they conducted family meetings. Using an observation template created from these interview data, we subsequently conducted ethnographic observations during family meetings. Using the methods of grounded theory, our findings were synthesized into a theoretical model depicting the structure and process of formal family meetings within this setting.
Results:The core of the family meeting was characterized by cognitive and affective elements aimed at supporting the family and facilitating quality care by clarifying the past, easing the present, and protecting the future. This inductive model was subsequently found to be highly aligned with a sense of coherence, an important influence on coping, and adaptation to the stress of a life-limiting illness.
Significance of Results:Provider communication with family members is particularly critical during advanced illness and end-of-life care. The National Consensus Project clinical practice guidelines for quality palliative care list regular family meetings among the recommended practices for excellent communication during end-of-life care, but do not provide specific guidance on how and when to provide such meetings. Our findings provide a theoretical model that can inform the design of a family meeting to address family members' needs for meaningful and contextualized information, validation of their important contributions to care, and preparation for the patient's death.
Final decisions: How hospice enrollment prompts meaningful choices about life closure
- Deborah P. Waldrop, Mary Ann Meeker
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- Journal:
- Palliative & Supportive Care / Volume 12 / Issue 3 / June 2014
- Published online by Cambridge University Press:
- 13 August 2013, pp. 211-221
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Objective:
The purpose of this study was to explore and describe decisions that faced newly enrolled hospice patients and their caregivers after hospice enrollment.
Method:An exploratory, descriptive, cross-sectional design was employed using qualitative methods. In-depth in-person interviews were conducted with current hospice patients (n = 35) and caregivers (n = 45) from 53 families.
Results:The decision to enroll in hospice was a critical juncture on the trajectory of a terminal illness that allowed patients and their families an opportunity to consider subsequent tasks that were important for life closure. A typology of five decisions is presented: (1) operationalized advance care planning (ACP): a renewed focus on decisions about care at life's end; (2) surrogate decision-making: caregivers begin making both informal and formal decisions for the dying person; (3) meaning-making: the foreshortened time brings into focus decisions about seeing special people, attending events, and creating memories; (4) Location of death: decisions about whether the person wants to and can remain at home to die; and (5) final acts: decisions about funeral arrangements, wills, and leaving a legacy become central. ACP was found to exist on a continuum that ranged from absent ACP, dormant ACP, simplified ACP to activated ACP. Hospice enrollment became a catalyst for reactivating discussion of end-of-life choices.
Significance of results:Hospice enrollment prompts the need to consider subsequent important choices that contribute to meaningful life closure, are central to the completion of a family relationship, and may influence adaptation in bereaved caregivers. It is important for clinicians to recognize that well-timed encouragement to consider and explore the use of hospice services, although it may indeed diminish hope for cure or recovery, simultaneously offers an opportunity to engage with important and time-sensitive developmental tasks.
Can short hospice enrollment be long enough? Comparing the perspectives of hospice professionals and family caregivers
- Deborah P. Waldrop, Elaine S. Rinfrette
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- Journal:
- Palliative & Supportive Care / Volume 7 / Issue 1 / March 2009
- Published online by Cambridge University Press:
- 13 February 2009, pp. 37-47
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Objective:
Hospice utilization lasting for 2 weeks or less before death is considered “short.” Short, late-stage hospice admissions have been viewed as inadequate for providing end-stage symptom management, maximal comfort, and a comprehensive focus on life closure and as an underutilization of the Medicare Hospice Benefit. The purpose of this study was to explore psychosocial dynamics during late-stage hospice admissions by comparing the perspectives of hospice professionals and family caregivers. Salutogenic principles and concepts from Antonovsky's Sense of Coherence Theory (SOC) guided the inquiry.
Methods:This exploratory, descriptive study involved a developmental design. First, hospice professionals' perspectives about psychosocial dynamics commonly observed in late-stage admissions were gathered. Themes were distilled into a Psychosocial Factors Checklist (PFC). Second, interviews that incorporated open-ended questions and the PFC were conducted with 56 family caregivers of hospice patients who died from cancer within 2 weeks of admission. Participant responses were transcribed and entered into Atlas ti software for data management and coding. Responses to the PFC were clustered around the SOC constructs (manageability, comprehensibility, meaningfulness) to create corresponding subscales. Interitem correlations were conducted to explore the associations among items.
Results:Late-stage admissions were a crisis (54%), chaotic (43%), emotional (80%), and a time of open communication (80%) and meaningful conversations (73%). Hospice utilization was “just long enough” (49%) and “too short” (49%). The Manageability subscale (M = 4.09) suggested that caregivers experienced moderate difficulty. Manageability included physical challenges, emotional responses, informational needs, and benefits/resources. Comprehensibility emerged from medical results, visual signs, and hospice guidance. Meaningfulness was personal-individual, family-shared, and spiritual-existential.
Significance of results:Hospice professionals and caregivers view late-stage admissions differently; they are a crisis for some but not all families. The development of a quick assessment tool for late-stage admissions has the potential for meaningful and effective intervention when time is of the essence.