scholarly journals Guiding the Decisions of Physicians and Families in End-of-Life Care: The Case of Long-Term Feeding Tube Placement

2004 ◽  
Vol 65 (4) ◽  
pp. 242-245
Author(s):  
2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 520-521
Author(s):  
Ruth Lopez ◽  
Ellen McCarthy ◽  
Meghan Hendricksen ◽  
Susan McLennon ◽  
Anita Rogers ◽  
...  

Abstract Over 5 million Americans have dementia, and the majority will die in nursing home (NHs). While comfort is the main goal of care for most NH residents with advanced dementia, they commonly receive burdensome and costly interventions such as hospital transfers and feeding tubes that are of little clinical benefit. Despite 20 years of research and numerous experts and associations advocating a palliative approach to care, quantitative studies continue to demonstrate striking and persistent regional, facility, and racial differences, including: greater intensity care among African American versus White residents; greater intensity of care in the Southeastern US; and wide variation in care among NHs in the same region of the country. The reasons for these differences are poorly understood. Assessment of Disparities and Variation for Alzheimer’s disease in Nursing home Care at End of life (ADVANCE) is a 3-year, NIA funded qualitative study of 16 NHs in 4 regions of the country which aims to explain regional and racial factors influencing feeding tube and hospital transfer rates. The purpose of this presentation is to present the methodology established in this study and to highlight factors challenging and enabling implementation of the study protocol. To date, data have been collected in 11 NHs, and include 135 staff interviews, 40 proxy interviews, and nearly 800 hours of observation. These findings demonstrate that although challenging, large qualitative research is possible and holds promise as an effective method to illuminate complex processes influencing end-of-life care for NH residents with advanced dementia.


2018 ◽  
Vol 13 (1) ◽  
pp. 40-47 ◽  
Author(s):  
Tomoko Terada ◽  
Keiko Nakamura ◽  
Kaoruko Seino ◽  
Masashi Kizuki ◽  
Naohiko Inase

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S669-S669
Author(s):  
Kelly Shryock ◽  
Jacinta Dickens ◽  
Anisha Thomas ◽  
Suzanne Meeks

Abstract Research on end-of-life care in nursing homes comes largely from the viewpoint of staff or family members. We examined patient perspectives on end-of-life care, preferences for care, and quality of life in long-term care settings. We hypothesized that fulfillment of the Self Determination Theory (SDT) needs of autonomy, competence, and relatedness would be related to better well-being and that the degree to which end-of-life care preferences are seen as possible in the setting would be related to SDT need fulfillment and well-being. Preliminary data, collected from older individuals at the end of life (over 55, presence of significant chronic disease, in long term care setting) (n= 72), demonstrated that autonomy, competence, and relatedness measures were moderately and significantly correlated with well-being as measured by life satisfaction, higher positive affect, lower negative affect, and overall quality of life measures The degree to which residents believed that their end-of-life care preferences could be honored in the setting was also significantly correlated with autonomy, competence, relatedness, positive affect, and psychological quality of life. These results are consistent with SDT and suggest that if long term care settings can promote autonomy, connection, and competence in making end of life decisions, possibly by discovering and fulfilling preferences for end of life care, individuals who end their lives on those settings have potential for greater satisfaction and happiness. These results suggest that SDT is a useful framework for ongoing research on how to improve the end of life experiences of older adults in long term care.


2011 ◽  
Vol 27 (3) ◽  
pp. 229-237 ◽  
Author(s):  
Carole Gill ◽  
Loretta M. Hillier ◽  
Jacqueline M. Crandall ◽  
Julie Johnston

BMJ Open ◽  
2020 ◽  
Vol 10 (8) ◽  
pp. e037466
Author(s):  
Patricia Harasym ◽  
Sarah Brisbin ◽  
Misha Afzaal ◽  
Aynharan Sinnarajah ◽  
Lorraine Venturato ◽  
...  

ObjectiveThe COVID-19 pandemic has highlighted ongoing challenges to optimal supportive end-of-life care for adults living in long-term care (LTC) facilities. A supportive end-of-life care approach emphasises family involvement, optimal symptom control, multidisciplinary team collaboration and death and bereavement support services for residents and families. Community-based and palliative care specialist physicians who visit residents in LTC facilities play an important role in supportive end-of-life care. Yet, perspectives, experiences and perceptions of these physicians remain unknown. The objective of this study was to explore barriers and facilitators to optimal supportive end-of-life palliative care in LTC through the experiences and perceptions of community-based and palliative specialist physicians who visit LTC facilities.DesignQualitative study using semi-structured interviews, basic qualitative description and directed content analysis using the COM-B (capability, opportunity, motivation - behaviour) theoretical framework.SettingResidential long-term care.Participants23 physicians who visit LTC facilities from across Alberta, Canada, including both in urban and rural settings of whom 18 were community-based physicians and 5 were specialist palliative care physicians.ResultsMotivation barriers include families’ lack of frailty knowledge, unrealistic expectations and emotional reactions to grief and uncertainty. Capability barriers include lack of symptom assessment tools, as well as palliative care knowledge, training and mentorship. Physical and social design barriers include lack of dedicated spaces for death and bereavement, inadequate staff, and mental health and spiritual services of insufficient scope for the population.ConclusionFindings reveal that validating families’ concerns, having appropriate symptom assessment tools, providing mentorship in palliative care and adapting the physical and social environment to support dying and grieving with dignity facilitates supportive, end-of-life care within LTC.


2021 ◽  
pp. 38-63
Author(s):  
Sabrina Ching Yuen Luk ◽  
Hui Zhang ◽  
Peter P. Yuen

2006 ◽  
Vol 1 (1) ◽  
pp. 45-50 ◽  
Author(s):  
Katherine A. Froggatt ◽  
Donna Wilson ◽  
Christopher Justice ◽  
Margaret MacAdam ◽  
Karen Leibovici ◽  
...  

2012 ◽  
Vol 11 (4) ◽  
pp. 307-314 ◽  
Author(s):  
Richard I. Grossberg ◽  
Martha Blackford ◽  
Sarah Friebert ◽  
Ethan Benore ◽  
Michael D. Reed

AbstractObjective:Children and young adults with severe disabilities and their families are faced with enormous challenges throughout the lifespan, including admitting the child to a long-term care facility (LTCF) and making end-of-life (EOL) care decisions. While children are residents of these specialized LTCF, the majority of their daily care, even up until death, is provided by nursing aides or habilitation aides (HAs) with limited training and educational backgrounds compared with other licensed healthcare providers. The purpose of this study was to determine the impact of a resident's EOL experience on the primary HAs and parents/guardians.Method:Thirty-five resident deaths occurred at Hattie Larlham Center for Children with Disabilities (HLCCD) between January 1, 2006 and February 28, 2009. The HAs and parents/legal guardians were identified for each death and invited to complete three surveys per resident (FAMCARE, Impact of Events Scale (IES)-revised, and Perspective on End-of-Life Care) to assess their experience. There were 112 surveys mailed to 62 HAs and 47 surveys mailed to 47 parents.Results:Forty-two surveys were returned from 18/62 HAs (response rate 29%) and 11/47 parents/legal guardians completed the surveys (response rate 23%). The FAMCARE survey found that parents were more satisfied with the EOL care than were the HAs. The IES-revised found no difference in traumatic responses from either group. Comments from the Perspective on End-of-Life Care survey were analyzed qualitatively for common themes including pain control, respect, decision making, environmental needs, resources, and support.Significance of results:Because of a low response rate, it was difficult to draw significant conclusions; however, several interesting trends were noted regarding the number of deaths HAs experienced, satisfaction with care, and distress. The special needs of this population and their caregivers can provide crucial insights into interventions (e.g. chaplaincy support, debriefings, anticipatory counseling, environmental changes) that might be of benefit for any caregiver or parent of a child with a long-term, chronic condition, particularly involving developmental disability.


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