Browsing by Subject "End of life care"

Now showing 1 - 4 of 4
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    Evaluation of the burdens and benefits of participation in research by parents of children with life-limiting illnesses
    (RCN Publishing, 2019-09-16) Hopper, Audrey; School of Nursing
    BACKGROUND: Research is needed to improve care and diminish suffering for children with life-limiting illnesses and their parents. However, there are doubts about whether it is possible to conduct paediatric end of life research safely and ethically, as it may unduly burden or inadvertently harm participants. AIM: To compare and evaluate responses from participants to the assessments of burdens and benefits that were conducted at two timepoints during a phenomenological study that investigated parents' experiences of having a child with life-limiting cancer participate in a Phase I clinical trial. DISCUSSION: Parents reported that participating in the study was beneficial and resulted in minimal burden or distress. The assessment of benefits and burdens at the first timepoint appeared sufficient to understand participants' experiences. CONCLUSION: This study adds to the evidence that research may be safely and effectively conducted with parents of children who are deceased or have life-limiting illnesses. Further research is needed to evaluate the most effective timing of assessments of the burdens and benefits of their participation in research. IMPLICATIONS FOR PRACTICE: It is important when conducting research with people with life-limiting illnesses or their family members to assess the burdens and benefits of their participation, to understand their experiences and assist in its conduct.
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    MAID ready for primetime?: A survey of SGO members regarding medical aid in dying (MAID)
    (Elsevier, 2021-07-05) Brown, Alaina J.; duPont, Nefertiti; Alvarez, Ronald D.; Spillman, Monique A.; Landrum, Lisa; Lefkowits, Carolyn; Obstetrics and Gynecology, School of Medicine
    Objectives: To assess SGO members' knowledge, attitudes, and practice patterns regarding Medical Aid In Dying (MAID). Methods: SGO members were surveyed via online survey. The survey included questions regarding demographics, knowledge, attitudes, and practice patterns relating to MAID. Descriptive statistics were calculated. Associations between sociodemographic factors and attitudes related to MAID were analyzed utilizing logistic regression. Results: Of 1,337 invited members, 225 (17%) responded. Median age was 46. Most were female (58%), white (81%), and in academic practice (64%). Over 50% had heard the term MAID and have had a patient ask about it. Few (20%) reported living in a state where MAID is legal and 61% of these respondents provided MAID. Sixty percent lived in a state that had not legalized MAID and 18% did not know if MAID was legal in their state. 36% of respondents living in a state where MAID was illegal/unknown legality indicated they would provide MAID if it were legal in their state, 30% would not, and 34% were uncertain. The majority (69%) of respondents believed MAID should be legal. Female respondents were more likely to support legalization of MAID (OR 2.44, p=<0.05). Respondents practicing in the southern U.S. were less likely to support legalization of MAID (OR 0.42, p=<0.05). Over 75% of respondents stated an SGO position statement on MAID would be helpful. Conclusions: MAID is a highly relevant topic for gynecologic oncologists. Gaps in MAID-related knowledge exist among SGO members and there is a desire for additional education and guidance regarding MAID.
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    Palliative Care For Nursing Home Residents: Applying Lessons Learned From Covid-19
    (Oxford University Press, 2022) Unroe, Kathleen; Medicine, School of Medicine
    Many people receive care near or at the end of life in nursing homes, including 70% of people with Alzheimer’s Disease and Related Dementias (ADRD). Studies have documented unmet needs for symptom management and frequent transitions of care for nursing home residents. Despite this, access to palliative care for nursing home residents is inconsistent. The COVID-19 pandemic both highlighted and exacerbated inequities in access to care, including in US-based nursing homes, as well as globally. COVID-19 specific guidance for nursing homes at state and federal levels, while designed to protect residents, contributed to increased social isolation and functional decline. Drawing upon data from an ongoing study to advance palliative care for residents living with ADRD, this presentation will highlight promising practices and opportunities to deliver palliative care in this setting.
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    The design and conduct of a pragmatic cluster randomized trial of an advance care planning program for nursing home residents with dementia
    (Sage, 2022) Hickman, Susan E.; Mitchell, Susan L.; Hanson, Laura C.; Tu, Wanzhu; Stump, Timothy E.; Unroe, Kathleen T.; School of Nursing
    Background/aims: A significant number of people with Alzheimer's disease or related dementia diagnoses will be cared for in nursing homes near the end of life. Advance care planning (ACP), the process of eliciting and documenting patient-centered preferences for care, is considered essential to providing high quality care for this population. Nursing homes are currently required by regulations to offer ACP to residents and families, but no training requirements exist for nursing home staff, and approaches to fulfilling this regulatory and ethical responsibility vary. As a result, residents may receive care inconsistent with their goals, such as unwanted hospitalizations. Pragmatic trials offer a way to develop and test ACP in real-world settings to increase the likelihood of adoption of sustainable best practices. Methods: The "Aligning Patient Preferences-a Role Offering Alzheimer's patients, Caregivers, and Healthcare Providers Education and Support (APPROACHES)" project is designed to pragmatically test and evaluate a staff-led program in 137 nursing homes (68 = intervention, 69 = control) owned by two nursing home corporations. Existing nursing home staff receive standardized training and implement the ACP Specialist program under the supervision of a corporate lead. The primary trial outcome is the annual rate of hospital transfers (admissions and emergency department visits). Consistent with the spirit of a pragmatic trial, study outcomes rely on data already collected for quality improvement, clinical, or billing purposes. Configurational analysis will also be performed to identify conditions associated with implementation. Results: Partnerships with large corporate companies enable the APPROACHES trial to rely on corporate infrastructure to roll out the intervention, with support for a corporate implementation lead who is charged with the initial introduction and ongoing support for nursing home-based ACP Specialists. These internal champions connect the project with other company priorities and use strategies familiar to nursing home leaders for the initiation of other programs. Standardized data collection across nursing homes also supports the conduct of pragmatic trials in this setting. Discussion: Many interventions to improve care in nursing homes have failed to demonstrate an impact or, if successful, maintain an impact over time. Pragmatic trials, designed to test interventions in real-world contexts that are evaluated through existing data sources collected routinely as part of clinical care, are well suited for the nursing home environment. A robust program that increases access to ACP for nursing home residents has the potential to increase goal-concordant care and is expected to reduce hospital transfers. If successful, the ACP Specialist Program will be primed for rapid translation into nursing home practice to reduce unwanted, burdensome hospitalizations and improve the quality of care for residents with dementia.