Decision Making in End of Life as Individual Preferences

Completed

• Conditions: Terminal Diseases

• Registration Number: NCT02428504
• Lead Sponsor: St. Luke's-Roosevelt Hospital Center

Brief Summary

It is not universal that terminally ill patients choose surrogate in the event of disagreement between the treating physician and the surrogate at the end of their lives. There are several factors that influence the terminally ill patient's decision to choose a decision maker at the end of his / life.

Detailed Description

The right of the patient to exercise autonomy, whether to accept the recommendation of physician is not lost when the patient is unable to make health related decision. This is the basis of substituted judgment. Without written advance directives, a surrogate has to be assigned using relevant state relationship hierarchy, and usually a family member serves as a surrogate when the patient no longer has capacity to make medical decisions. Several studies showed that surrogates do not predict the patients preference accurately when both are asked to respond to hypothetical questions. Patient designated hierarchy predicted the patient treatment preferences with 69% accuracy whereas legally assigned proxy was accurate in 68%. Even the prior discussion of the treatment preferences did not seem to improve the surrogate accuracy. Surrogates make errors predicting patient's preferences in different directions, as was found in several studies. Three studies have found that surrogates err by providing intervention that patients do not want, while others found no specific trends. Other studies showed physicians to be less accurate than surrogates in predicting the patient's wishes.

Some studies have shown that patients want their surrogates to make decision for them when there is disagreement between the patient's wishes and his or her surrogate. No studies have looked at patients preferences when there is conflict between the surrogate and the physician.

To choose the right surrogate is a paramount. One way to do this is to analyze the patient's trends as to 'how' and 'why' patients choose his or her surrogates. Little is known about what factors influence the patients' decisions to choose the surrogate and what would be their decision in the event of disagreement between the treating physician and the surrogate. Factors such as patient's culture, ethnic or religious background may play an important role in patients' preferences at the end of their lives.

The investigators aim to assess terminally ill patients' decision making preferences at the end of life and identify specific factors that determine their preferences.

Study Timeline

• Study Start: 2012-06
• Study First Submitted: 2012-10-15
• Study First Submitted QC: 2015-04-27
• Study First Posted: 2015-04-28
• Primary Completion: 2015-12
• Study Completion: 2015-12
• Status Verified: 2016-03
• Last Update Submitted: 2016-03-08
• Last Update Posted: 2016-03-09

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 148

Inclusion Criteria

1. Non-resectable malignancy undergoing palliative care treatment
2. Severe end stage COPD with FEV1 < 30% and receiving home O2 for > six months
3. End stage cardiomyopathy NYHA class III/IV, not candidate for heart transplantation.

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Exclusion Criteria

• None

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Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
DECISION MAKING IN END OF LIFE: INDIVIDUALS PREFERENCES	1 year	Individual Preferences

Secondary Outcome Measures

Name	Time	Method
DECISION MAKING IN END OF LIFE: INDIVIDUALS PREFERENCES	1 year	Risk factors influencing individual preferences

Trial Locations

Locations (1)

St. Luke's Roosevelt Hospital Center; 🇺🇸 New York, New York, United States