Nursing Home Resident, Family, and Staff Perspectives on Hospital Transfers for End-of-Life Care

2021 ◽  
pp. 003022282199770
Author(s):  
Janet Sopcheck ◽  
Ruth M. Tappen
Keyword(s):  
Emergency Department ◽  
Nursing Home ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Terminally Ill ◽  
South Florida ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Residents who are terminally ill often experience transfers to the emergency department resulting in hospitalizations, which may be potentially avoidable with treatment in the nursing home. This qualitative study explored the perspectives of 15 residents, 10 family members, and 20 nursing home staff regarding end-of-life care and the circumstances prompting resident transfers. Data analysis of participant interviews conducted January to May 2019 in a South Florida nursing home identified four themes related to transfer to the hospital: time left to live, when aggressive treatments would be unavailing, not knowing what the nursing home can do, and transfer decisions are situation-dependent. Study findings underscore the importance of increasing resident and family awareness of treatments available in the nursing home and person-centered advance care planning discussions. Further research should explore the reasons for residents’ and family members’ choice of aggressive therapies and their goals for care at the end of life.

Advance Care Planning and End-of-Life Care for Hospitalized Nursing Home Residents

2002 ◽  
Vol 50 (5) ◽  
pp. 829-835 ◽  
Author(s):  
Mary Beth Happ ◽  
Elizabeth Capezuti ◽  
Neville E. Strumpf ◽  
Laura Wagner ◽  
Sarah Cunningham ◽  
...  
Keyword(s):  
Nursing Home ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Nursing Home Residents ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Association Between Advance Directives and Quality of End-of-Life Care (DRAFT)

2018 ◽  
Author(s):  
Donna S. Zhukovsky
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Family Members ◽  
Care Planning ◽  
Life Care ◽  
Care Providers ◽  
Advance Care

Advance care planning is a complex process whereby an individual reflects on future care options at the end of life after reflecting on his or her values and goals for care. These values, goals, and preferences are then communicated to key stakeholders in the process (i.e., proxy and surrogate decision-makers, family members, and health care providers). It is unclear how well the completion of advance directives and a written outcome of advance care planning affect desired patient outcomes. In this chapter, a critical review is provided of a mortality follow-back survey that evaluates the association of advance directives with quality of end-of-life care from the perspective of bereaved family members. Study strengths and limitations are described, as are directions for future research.

Planning End-of-Life Care for Patients with Dementia: Roles of Families and Health Professionals

2001 ◽  
Vol 42 (4) ◽  
pp. 273-291 ◽  
Author(s):  
Charles E. Gessert ◽  
Sarah Forbes ◽  
Mercedes Bern-Klug
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Family Members ◽  
Care Planning ◽  
Life Care ◽  
Dementia Patients ◽  
Advance Care ◽  
Surrogate Decision

We examined families' end-of-life decision making and their interactions with health professionals. Twenty-eight family members of institutionalized dementia patients participated in four focus groups. We found that participating family members were not well prepared for their decision-making roles, and that they: 1) experienced substantial burdens and loss in caring for institutionalized elders; 2) had limited understanding of the natural progression of dementing conditions; 3) were uncomfortable in setting goals for their relatives' end-of-life care; 4) had little experience with death, and were ambivalent about the anticipated death of their relative; and (5) reported that they had little substantive communication with health professionals regarding end-of-life care planning. We concluded that many of the needs of such families could be addressed through improved application of the principles of advance care planning, including regular structured discussions, involvement of surrogate decision-makers, and anticipation of clinical decisions. Health professionals should take the lead in ‘normalizing’ the discussion of death.

Do patients with lung cancer recall physician-initiated discussions about planning for end-of-life care following disclosure of a terminal prognosis?

2016 ◽  
Vol 9 (2) ◽  
pp. 197-201 ◽  
Author(s):  
Gillian Horne ◽  
Sheila Payne ◽  
Jane Seymour
Keyword(s):  
Lung Cancer ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Terminally Ill ◽  
Care Planning ◽  
Life Care ◽  
Goals Of Care ◽  
Terminally Ill Patients ◽  
Terminal Prognosis

BackgroundCommunicating with patients about their prognosis and goals of care, including offering opportunities to engage in advance care planning (ACP) is widely recognised as best practice. Little is known about terminally ill patients’ perceptions of communication and ACP practice following disclosure of their terminal prognosis.ObjectivesTo examine whether terminally ill patients with lung cancer and their relatives recall conversations with disclosing physicians, about their concerns, goals of care or any offers to engage in ACP.MethodsQualitative study using semistructured interviews with patients and their family members. The study setting was a cancer centre and cancer unit in northern England.Results25 patients with advanced lung cancer (18 men and 7 women, aged 47–85) and 19 family members, mainly from lower social economic classes, took part in the study. Participants had little or no recall of physicians initiating discussions about their concerns, or goals of care and did not perceive that they had been provided with either information about or opportunities to engage in ACP. Some participants reported a sense of abandonment following the disclosure of a terminal prognosis. This sense was compounded by a range of difficult emotional experiences following the disclosure.ConclusionsIt may be inappropriate to initiate discussions about end-of-life care planning immediately following the disclosure of a terminal prognosis. To avoid patients feeling abandoned physicians need to consider how they or another appropriate person can provide information and opportunities for terminally ill patients to engage in a process of ACP.Trial registration number06/Q2307/22.

scholarly journals How Acculturation Influences Attitudes About Advance Care Planning and End-of-life Care Among Chinese Living in Taiwan, Hong Kong, Singapore, and Australia

2021 ◽  
Author(s):  
Fu-Ming Chiang ◽  
Jyhgang Hsieh ◽  
Ying-Wei Wang
Keyword(s):  
Hong Kong ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Family Members ◽  
Individual Autonomy ◽  
Clear Understanding ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Abstract Background ： Understanding attitudes towards life and death issues in different cultures is critical in end-of-life care and the uptake of advance care planning (ACP) in different countries. However, existing research suffers from a lack of cross-cultural comparisons among countries. By conducting this comparative study, we hope to achieve a clear understanding of the linkages and differences among healthcare cultures in different Chinese societies, which may serve as a reference for promoting ACP by considering cultural differences. Methods ： Our researchers recruited Chinese adults who could communicate in Mandarin and lived in metropolitan areas in Taiwan, Hong Kong, Singapore, and Australia. Focus group interviews were conducted, and the interview contents were recorded and subjected to thematic analysis. Results ： Between June and July 2017, 14 focus groups with 111 participants were conducted in four regions. With traditional Chinese attitudes towards death as a taboo, many participants felt it would be challenging to discuss ACP with elderly family members. Most participants also desire to avoid suffering for the self and family members. Although the four regions' participants shared a similar Chinese cultural context, significant regional differences were found in the occasions at which participants would engage in end-of-life discussions and select settings for end-of-life care. By contrast, participants from Singapore and Australia exhibited more open attitudes. Most participants from Taiwan and Hong Kong showed a preference for end-of-life care at a hospital. Conclusions ： The developmental experiences of ACP in Western countries, which place a strong emphasis on individual autonomy, cannot be directly applied to family-centric Asian ones. Healthcare professionals in Asian societies should make continuous efforts to communicate patient status to patients and their family members to ensure family involvement in decision-making processes.

scholarly journals Advance Care Planning Among Patients With Advanced Cancer

2019 ◽  
Vol 15 (1) ◽  
pp. e65-e73 ◽  
Author(s):  
Jane R. Schubart ◽  
Benjamin H. Levi ◽  
Megan M. Bain ◽  
Elana Farace ◽  
Michael J. Green
Keyword(s):  
End Of Life ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Decision Aid ◽  
Family Members ◽  
Care Planning ◽  
Life Care ◽  
Physician Awareness ◽  
Advance Care

Purpose: Advance directives (AD) have been heralded as vehicles to promote patient autonomy and have been decried as ineffective. Efforts to improve advance care planning (ACP) and AD documents are wide ranging but have not been prospectively studied. Materials and Methods: In an institutional review board–approved, single-blind, randomized, controlled trial, we compared an interactive, educational ACP decision aid to standard ACP among patients with advanced cancer. We hypothesized that use of the decision aid would increase physician awareness of patients’ health care wishes and increase physician adherence to patients’ end-of-life wishes compared with standard ACP. Results: A total of 200 patients were randomly assigned to two study arms. We analyzed data from medical records and interviews with physicians and family members for 121 patients who died by August 2016. No differences in physician awareness or adherence were found between the ACP decision aid and standard ACP groups. End-of-life treatment wishes and discussion of wishes were documented for 70% and 64% of the patients, respectively, but only 35% had an actual AD in the medical record. According to family members, end-of-life care was consistent with the patients’ stated wishes 94% of the time. Similarly, according to physicians, it was consistent for 98%. However, according to AD documents, delivered care was consistent with desired care in only 65%. Considerably fewer patients than predicted died, and data from physicians were difficult to obtain. Conclusion: ACP type did not influence documentation of patient wishes or end-of-life care received. Future prospective studies must account for challenges in prognostication and point-of-care data collection at the end of life.

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