Decision Making About End of Life Care: Advance Directives, Durable Power of Attorney for Healthcare, and Talking with Patients with Heart Disease About Dying

2014 ◽  
pp. 21-32
Author(s):  
Craig Tanner
Keyword(s):  
Decision Making ◽  
Heart Disease ◽  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Life Care ◽  
Power Of Attorney ◽  
Durable Power Of Attorney

scholarly journals An Individual Housing-Based Socioeconomic Status Measure Predicts Advance Care Planning and Nursing Home Utilization

2018 ◽  
Vol 36 (5) ◽  
pp. 362-369 ◽  
Author(s):  
Amelia Barwise ◽  
Young J. Juhn ◽  
Chung-Il Wi ◽  
Paul Novotny ◽  
Carolina Jaramillo ◽  
...  
Keyword(s):  
Decision Making ◽  
Socioeconomic Status ◽  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Composite Index ◽  
Life Care ◽  
Individual Housing ◽  
Lower Likelihood ◽  
Multiple Variables

Background: Socioeconomic status (SES) is an important determinant of disparities in health care and may play a role in end-of-life care and decision-making. The SES is difficult to retrospectively abstract from current electronic medical records and data sets. Objective: Using a validated SES measuring tool derived from home address, the HOUsing-based SocioEconomic Status index, termed HOUSES we wanted to determine whether SES is associated with differences in end-of-life care and decision-making. Design/Setting/Participants: This cross-sectional study utilized a cohort of Olmsted County adult residents admitted to 7 intensive care units (ICUs) at Mayo Rochester between June 1, 2011, and May 31, 2014. Measurements: Multiple variables that reflect decision-making and care at end of life and during critical illness were evaluated, including presence of advance directives and discharge disposition. The SES was measured by individual housing-based SES index (HOUSES index; a composite index derived from real property as a standardized z-score) at the date of admission to the ICU which was then divided into 4 quartiles. The greater HOUSES, the higher SES, outcomes were adjusted for age, 24-hour Acute Physiology and Chronic Health Evaluation III score, sex, race/ethnicity, and insurance. Results: Among the eligible 4134 participants, the addresses of 3393 (82%) were successfully geocoded and formulated into HOUSES. The adjusted odds ratios comparing HOUSES 1 versus 2, 3, and 4 demonstrated lower likelihood of advance directives −0.77(95% CI: 0.63-0.93) and lower likelihood of discharge to home −0.60(95% CI: 1.0.5-0.72). Conclusion: Lower SES, derived from a composite index of housing attributes, was associated with lower rates of advance directives and lower likelihood of discharge to home.

Huntington’s Disease: A Caring Approach to the End of Life

2008 ◽  
Vol 9 (2) ◽  
pp. 75-81 ◽  
Author(s):  
Joseph Klager ◽  
Ayana Duckett ◽  
Susan Sandler ◽  
Carol Moskowitz
Keyword(s):  
Decision Making ◽  
Nursing Home ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Disease Progression ◽  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Life Care ◽  
Home Setting

This article describes the challenges of end-of-life care encountered in a specialized long-term care program for people with Huntington’s disease (HD). The Promoting Excellence in End-of-Life Care Huntington’s Disease Workgroup defines the initiation of palliative care as the point at which independent living is no longer possible. Mobility and lifestyle accommodations for people in the nursing home setting with an early-onset disease are a major feature of this program. The primary end-of-life considerations are advance directives decision-making and anticipating end-stage care needs. Disease progression, denial, family conflict, and clinician blind-spots may impede the development of timely advance directives. The unpredictable and idiosyncratic nature of disease progression impacts decision making for end-of-life care settings and approaches: hospitalization, nursing home stay, and in-house hospice care are the available options. The Workgroup has delineated several priority areas for patient care in HD: autonomy; dignity; meaningful social interaction; communication; comfort; safety and order; spirituality; enjoyment, entertainment, and well-being nutrition; and functional competence. This review also includes a description of the program features in each of these areas.

Effect of the Contents in Advance Directives on Individuals’ Decision-Making

2018 ◽  
Vol 81 (3) ◽  
pp. 436-453
Author(s):  
Jae Yoon Park ◽  
Chi-Yeon Lim ◽  
Gloria Puurveen ◽  
Do Yeun Kim ◽  
Jae Hang Lee ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Directives ◽  
Advance Directive ◽  
End Of Life Care ◽  
Life Care ◽  
Specific Content ◽  
Reference Form ◽  
To Receive ◽  
Negative Form

Completing an advance directive offers individuals the opportunity to make informed choices about end-of-life care. However, these decisions could be influenced in different ways depending on how the information is presented. We randomly presented 185 participants with four distinct types of advance directive: neutrally framed (as reference), negatively framed, religiously framed, and a combination. Participants were asked which interventions they would like to receive at the end of life. Between 60% and 70% of participants responded “accept the special interventions” on the reference form. However, the majority (70%–90%) chose “refuse the interventions” on the negative form. With respect to the religious form, 70% to 80% chose “not decided yet.” Participants who refused special life-sustaining treatments were older, female, and with better prior knowledge about advance directives. Our findings imply that the specific content of advance directives could affect decision-making with regard to various interventions for end-of-life care.

scholarly journals Conversations About Death and Dying, End-of-Life Care Plans and Preferences Between Aging Parents and Adult Children

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-417
Author(s):  
Hyo Jung Lee ◽  
Jacobbina Jin Wen Ng
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Adult Children ◽  
End Of Life Care ◽  
Death And Dying ◽  
Family Members ◽  
Life Care ◽  
Joint Decision ◽  
Aging Parents ◽  
Care Plans

Abstract This study aims to investigate whether attitude and perception on late-life death and dying, end-of-life care plans and preferences could be better understood from current values shared between aging parents and their adult children in the multi-cultural city-bound country, Singapore. We are in the process of interviewing 20 aging parent-adult child dyads. Up to date, six semi-structured interviews were completed and transcribed. We performed Content analysis to analyze the transcripts. Preliminary findings showed that both aging parents and adult children rarely discussed this issue, although parents had their own plans or preferences. The major barriers against open conversations about death and dying of aging parents include: the perception of not-yet time to talk about this issue (without knowing when the right time is) and tendency to have conversations about death in tandem with finances, but not death itself. Although specific end-of-life care plans or arrangements were not thought out thoroughly, aging parents expressed a high level of trust and reliance on close family members’ decisions regarding their end-of-life care. They tended to agree on joint decision-making process within family, even though adult children had no or unmatched ideas about their aging parents’ end-of-life wishes. This did not necessarily align with previous findings in Western countries, underscoring individuals’ control over their own death and dying process. Open conversation within family, family-involved advance care planning, or joint decision-making processes may be warranted to promote quality of life and death in older Singaporeans and well-being of their family members of all ages.

End‐of‐life care for children with complex congenital heart disease: Parents' and medical care givers' perceptions

2020 ◽  
Author(s):  
Caterina Agosto ◽  
Francesca Benedetti ◽  
Valentina De Tommasi ◽  
Ornella Milanesi ◽  
Giovanni Stellin ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Medical Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Congenital Heart ◽  
Complex Congenital Heart Disease ◽  
Life Care ◽  
Care Givers

How individual ethical frameworks shape physician trainees’ experiences providing end-of-life care: a qualitative study

2021 ◽  
pp. medethics-2020-106690
Author(s):  
Sarah Rosenwohl-Mack ◽  
Daniel Dohan ◽  
Thea Matthews ◽  
Jason Neil Batten ◽  
Elizabeth Dzeng
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Shared Decision Making ◽  
End Of Life Care ◽  
The United States ◽  
Ethical Framework ◽  
Shared Decision ◽  
Life Care ◽  
Best Interest ◽  
Ethical Frameworks

ObjectivesThe end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care.DesignWe conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis.SettingAcademic teaching hospitals in the United States and United Kingdom.ParticipantsWe interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be associated with individual ethics (stage of training, gender and national healthcare context) in order to elicit a diversity of ethical and experiential perspectives.ResultsSome trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient’s goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker.ConclusionsThis study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians’ ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care.

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