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Decision Making in End of Life as Individual Preferences

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details. Identifier: NCT02428504
Recruitment Status : Completed
First Posted : April 28, 2015
Last Update Posted : March 9, 2016
Information provided by (Responsible Party):
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.

Condition or disease
Terminal Diseases

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.

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Study Type : Observational
Actual Enrollment : 148 participants
Time Perspective: Prospective
Official Title: Decision Making in End of Life: Individual Preferences
Study Start Date : June 2012
Actual Primary Completion Date : December 2015
Actual Study Completion Date : December 2015

End of life decision

Primary Outcome Measures :
    Individual Preferences

Secondary Outcome Measures :
    Risk factors influencing individual preferences

Information from the National Library of Medicine

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Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Patients from Oncology, Pulmonary and Heart Failure.

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.

Exclusion Criteria:

  • None

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT02428504

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United States, New York
St. Luke's Roosevelt Hospital Center
New York, New York, United States, 10019
Sponsors and Collaborators
St. Luke's-Roosevelt Hospital Center
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Principal Investigator: Hassan Khouli, MD St. Luke's-Roosevelt Hospital Center

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Responsible Party: St. Luke's-Roosevelt Hospital Center Identifier: NCT02428504     History of Changes
Other Study ID Numbers: 08-150
First Posted: April 28, 2015    Key Record Dates
Last Update Posted: March 9, 2016
Last Verified: March 2016

Keywords provided by St. Luke's-Roosevelt Hospital Center: