Micromanaging Death: Process Preferences, Values, and Goals in End-of-Life Medical Decision Making

Hawkins, Nikki A.; Ditto, Peter H.; Danks, Joseph H.; Smucker, William D.

doi:10.1093/geront/45.1.107

Cited by 169 publications

(143 citation statements)

References 18 publications

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“…3,8,9 Physicians often underestimate the emotional resilience of patients and their desire to be involved in this decision-making process.…”

Section: Discussionmentioning

confidence: 99%

“…6,7 This lack of planning can have negative consequences including emotional distress for patients and caregivers, and medical care that is inconsistent with patients' wishes. [8][9][10] Unfortunately, even when ACP discussions are initiated, they are often ineffective because of poor patient-physician communication and patients' lack of sufficient medical knowledge to engage in these discussions.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Use of Video to Facilitate End-of-Life Discussions With Patients With Cancer: A Randomized Controlled Trial

El‐Jawahri

Podgurski²,

Eichler³

et al. 2010

JCO

221

292

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A B S T R A C T PurposeTo determine whether the use of a goals-of-care video to supplement a verbal description can improve end-of-life decision making for patients with cancer. MethodsFifty participants with malignant glioma were randomly assigned to either a verbal narrative of goals-of-care options at the end of life (control), or a video after the same verbal narrative (intervention) in this randomized controlled trial. The video depicts three levels of medical care: life-prolonging care (cardiopulmonary resuscitation [CPR], ventilation), basic care (hospitalization, no CPR), and comfort care (symptom relief). The primary study outcome was participants' preferences for end-of-life care. The secondary outcome was participants' uncertainty regarding decision making (score range, 3 to 15; higher score indicating less uncertainty). Participants' comfort level with the video was also measured. ResultsFifty participants were randomly assigned to either the verbal narrative (n ϭ 27) or video (n ϭ 23). After the verbal description, 25.9% of participants preferred life-prolonging care, 51.9% basic care, and 22.2% comfort care. In the video arm, no participants preferred life-prolonging care, 4.4% preferred basic care, 91.3% preferred comfort care, and 4.4% were uncertain (P Ͻ .0001). The mean uncertainty score was higher in the video group than in the verbal group (13.7 v 11.5, respectively; P Ͻ .002). In the intervention arm, 82.6% of participants reported being very comfortable watching the video. ConclusionCompared with participants who only heard a verbal description, participants who viewed a goals-of-care video were more likely to prefer comfort care and avoid CPR, and were more certain of their end-of-life decision making. Participants reported feeling comfortable watching the video.

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“…3,8,9 Physicians often underestimate the emotional resilience of patients and their desire to be involved in this decision-making process.…”

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Use of Video to Facilitate End-of-Life Discussions With Patients With Cancer: A Randomized Controlled Trial

El‐Jawahri

Podgurski²,

Eichler³

et al. 2010

JCO

221

292

View full text Add to dashboard Cite

show abstract

“…This research reveals that the majority of patients prefer that family members or physicians have input into the decisions. [34][35][36][37][38] In these studies, as in the ones examining the stability of patients' preferences, the patients who were most likely to want their wishes to prevail were the ones who more often wrote advanced directives. 38 …”

Section: The Evidence Against Substituted Judgmentmentioning

confidence: 99%

Substituted Judgment: The Limitations of Autonomy in Surrogate Decision Making

2008

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“…3,4 Therefore it has been suggested that physicians should not only pay attention to the preferences of the patient in relation to specific medical situations that might arise, but also to how the patient wants medical decisions to be made if he should lose competence, e.g., does the patient wish other people to be involved, who does he wish to be involved and to what degree? 5,6 To examine the involvement of family and/or other people in medical decision-making from the perspective of the patient's preferences, we investigated advanced lung cancer patients during the course of their disease. The research questions were:…”

Section: Introductionmentioning

confidence: 99%

Preferences of Patients with Advanced Lung Cancer Regarding the Involvement of Family and Others in Medical Decision-Making

Pardon

Deschepper

Stichele

et al. 2010

Journal of Palliative Medicine

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Objective: To explore the preferences of competent patients with advanced lung cancer regarding involvement of family and/or others in their medical decision-making, and their future preferences in case of loss of competence. Methods: Over 1 year, physicians in 13 hospitals in Flanders, Belgium, recruited patients with initial non-smallcell lung cancer, stage IIIb or IV. The patients were interviewed with a structured questionnaire every 2 months until the fourth interview and every 4 months until the sixth interview. Results: At inclusion, 128 patients were interviewed at least once; 13 were interviewed 6 consecutive times. Sixty-nine percent of patients wanted family members to be involved in medical decision-making and this percentage did not change significantly over time. One third of these patients did not achieve this preference. Ninety-four percent of patients wanted family involvement if they lost competence, 23% of these preferring primary physician control over decision-making, 41% shared physician and family control, and 36% primary family control. This degree of preferred family involvement expressed when competent did not change significantly over time at population level, but did at individual level; almost half the patients changed their minds either way at some point during the observation period. Conclusions: The majority of patients with lung cancer wanted family involvement in decision-making, and almost all did so in case of future loss of competence. However, as half of the patients changed their minds over time about the degree of family involvement they wanted if they lost competence, physicians should regularly rediscuss a patient's preferences.

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Micromanaging Death: Process Preferences, Values, and Goals in End-of-Life Medical Decision Making

Cited by 169 publications

References 18 publications

Use of Video to Facilitate End-of-Life Discussions With Patients With Cancer: A Randomized Controlled Trial

Use of Video to Facilitate End-of-Life Discussions With Patients With Cancer: A Randomized Controlled Trial

Substituted Judgment: The Limitations of Autonomy in Surrogate Decision Making

Preferences of Patients with Advanced Lung Cancer Regarding the Involvement of Family and Others in Medical Decision-Making

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