Who Should Make Medical Decisions When a Patient Lacks an Advance Directive?

Patients admitted to the hospital with neurological problems are sometimes incapacitated and unable to make end-of-life decisions. In these instances, without an advanced directive from the patient, clinicians and family members must make critical medical decisions without input from the patient. This paper looks at two cases - one child and one adult – in which neuroprognosis was uncertain, and physician and family members’ beliefs on end-of-life care clash. We provide insight into these disagreements and reflect on how best to manage them. We argue that when considering withdrawing treatment, respecting autonomy is of paramount importance, while decision-making about continuing life-sustaining treatment requires clinicians to ensure surrogates are adequately educated about the principle of beneficence.

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

Innovation in Aging ◽

10.1093/geroni/igaa057.1345 ◽

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.

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Honoring Preferences—The Consistency Between End-of-Life Care and a Veteran’s Goal for Comfort Care

Innovation in Aging ◽

10.1093/geroni/igaa057.2711 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 752-752

Author(s):

Joan Carpenter ◽

Winifred Scott ◽

Mary Ersek ◽

Cari Levy ◽

Jennifer Cohen ◽

...

Keyword(s):

Palliative Care ◽

Logistic Regression ◽

End Of Life ◽

End Of Life Care ◽

Life Care ◽

Multivariate Logistic Regression ◽

Comfort Care ◽

Lower Odds ◽

Medicare Data ◽

Life Sustaining Treatment

Abstract This study examined the alignment between Veterans’ end-of-life care and a Life-Sustaining Treatment (LST) goal “to be comfortable.” It includes Veterans with VA inpatient or community living center stays overlapping July 2018--January 2019, with a LST template documented by January 31, 2019, and who died by April 30, 2019 (N = 18,163). Using VA and Medicare data, we found 80% of decedents with a comfort care goal received hospice and 57% a palliative care consult (compared to 57% and 46%, respectively, of decedents without a comfort care goal). Using multivariate logistic regression, a comfort care goal was associated with significantly lower odds of EOL hospital or ICU use. In the last 30 days of life, Veterans with a comfort care goal had 43% lower odds (AOR 0.57; 95% CI: 0.51, 0.64) of hospitalization and 46% lower odds of ICU use (AOR 0.54; 95% CI: 0.48, 0.61).

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Course and predictors of posttraumatic stress-related symptoms among family members of deceased ICU patients during the first year of bereavement

Critical Care ◽

10.1186/s13054-021-03719-x ◽

2021 ◽

Vol 25 (1) ◽

Author(s):

Siew Tzuh Tang ◽

Chung-Chi Huang ◽

Tsung-Hui Hu ◽

Wen-Chi Chou ◽

Li-Pang Chuang ◽

...

Keyword(s):

Social Support ◽

Posttraumatic Stress ◽

End Of Life ◽

End Of Life Care ◽

Family Members ◽

Life Care ◽

Ptsd Symptoms ◽

Icu Patients ◽

Clinically Significant ◽

Bereaved Family

Abstract Background/Objective Death in intensive care units (ICUs) may increase bereaved family members’ risk for posttraumatic stress disorder (PTSD). However, posttraumatic stress-related symptoms (hereafter as PTSD symptoms) and their precipitating factors were seldom examined among bereaved family members and primarily focused on associations between PTSD symptoms and patient/family characteristics. We aimed to investigate the course and predictors of clinically significant PTSD symptoms among family members of deceased ICU patients by focusing on modifiable quality indicators for end-of-life ICU care. Method In this longitudinal observational study, 319 family members of deceased ICU patients were consecutively recruited from medical ICUs from two Taiwanese medical centers. PTSD symptoms were assessed at 1, 3, 6, and 13 months post-loss using the Impact of Event Scale-Revised (IES-R). Family satisfaction with end-of-life care in ICUs was assessed at 1 month post-loss. End-of-life care received in ICUs was documented over the patient’s ICU stay. Predictors for developing clinically significant PTSD symptoms (IES-R score ≥ 33) were identified by multivariate logistic regression with generalized estimating equation modeling. Results The prevalence of clinically significant PTSD symptoms decreased significantly over time (from 11.0% at 1 month to 1.6% at 13 months post-loss). Longer ICU stays (adjusted odds ratio [95% confidence interval] = 1.036 [1.006, 1.066]), financial insufficiency (3.166 [1.159, 8.647]), and reported use of pain medications (3.408 [1.230, 9.441]) by family members were associated with a higher likelihood of clinically significant PTSD symptoms among family members during bereavement. Stronger perceived social support (0.937 [0.911, 0.965]) and having a Do-Not-Resuscitate (DNR) order issued before the patient’s death (0.073 [0.011, 0.490]) were associated with a lower likelihood of clinically significant PTSD symptoms. No significant association was observed for family members’ satisfaction with end-of-life care (0.988 [0.944, 1.034]) or decision-making in ICUs (0.980 [0.944, 1.018]). Conclusions The likelihood of clinically significant PTSD symptoms among family members decreased significantly over the first bereavement year and was lower when a DNR order was issued before death. Enhancing social support and facilitating a DNR order may reduce the trauma of ICU death of a beloved for family members at risk for developing clinically significant PTSD symptoms.

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We Want More Than Life-Sustaining Treatment during End-of-Life Care: Focus-Group Interviews

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18094415 ◽

2021 ◽

Vol 18 (9) ◽

pp. 4415

Author(s):

Mirinae Kim ◽

Minju Kim

Keyword(s):

Focus Group ◽

End Of Life ◽

End Of Life Care ◽

Life Care ◽

Treatment Needs ◽

Focus Group Interviews ◽

Care Needs ◽

Basic Care ◽

Life Sustaining Treatment ◽

Group Interviews

We qualitatively investigated end-of-life care needs. Data were collected via focus-group interviews with three groups: young adults, middle-aged adults, and older adults. The key question was, “What kind of care would you like to receive at the end of life?” Interview data were transcribed and analyzed using content analysis. End-of-life care needs were classified into six categories: life-sustaining treatment needs, physical care needs, emotional care needs, environmental needs, needs for respect, and needs for preparation for death. Because the Korean culture is family-oriented and talking about death is taboo, Korean patients at the end of their life do not make decisions about life-sustaining treatment or actively prepare for death. Therefore, to provide proper end-of-life care, conversations and shared decision-making among patients and their families are crucial. Further, we must respect patients’ dignity and help them achieve a good death by understanding patients’ basic care preferences. Future research should continue examining end-of-life care needs that reflect the social and cultural context of Korea to inform instrument development.

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

OMEGA - Journal of Death and Dying ◽

10.1177/0030222821997708 ◽

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.

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End-of-Life Doulas: Documenting Their Backgrounds and Services

OMEGA - Journal of Death and Dying ◽

10.1177/00302228211047097 ◽

2021 ◽

pp. 003022282110470

Author(s):

Amy Dellinger Page ◽

Jonelle H. Husain

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Qualitative Interviews ◽

Family Members ◽

Demographic Characteristics ◽

Life Care ◽

Healthcare Settings ◽

Survey Results ◽

Original Survey

This is an exploratory study to document the demographic characteristics, backgrounds, and services provided by trained and certified INELDA end-of-life doulas. Like birth doulas, end-of-life doulas represent a divergent, yet complementary form of care for dying persons. The purpose of end-of-life care is to facilitate comfort of the dying person and their closest family members. Surveys were completed by 618 end-of-life doulas regarding their demographic characteristics, employment backgrounds, services, and their experiences providing end of life care to dying persons and their closest family members. Follow-up qualitative interviews were also conducted with a subset of 39 respondents who completed the original survey. Results show that trained doulas are largely white (91.4%), female (90.4%), hold a Bachelor’s (32.3%) or Masters (32.4%) degree, and are employed outside of their EOLD work (70.1%). Qualitative data details services provided to dying persons and family members in addition to the benefits and challenges of working with traditional healthcare settings.

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