Decision Making in End of Life as Individual Preferences

Decision Making in End of Life: Individual Preferences

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.

Study Overview

• Status: Completed
• Conditions: 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.

• Study Type: Observational
• Enrollment (Actual): 148

Contacts and Locations

Study Locations

• United States
  • New York
    • New York, New York, United States, 10019
      • St. Luke's Roosevelt Hospital Center

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

Patients from Oncology, Pulmonary and Heart Failure.

Description

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

Study Plan

How is the study designed?

Design Details

• Time Perspectives: Prospective

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort
End of life decision

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
DECISION MAKING IN END OF LIFE: INDIVIDUALS PREFERENCES	Individual Preferences	1 year

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
DECISION MAKING IN END OF LIFE: INDIVIDUALS PREFERENCES	Risk factors influencing individual preferences	1 year

Collaborators and Investigators

• Sponsor: St. Luke's-Roosevelt Hospital Center

Study record dates

Study Major Dates

• Study Start: June 1, 2012
• Primary Completion (Actual): December 1, 2015
• Study Completion (Actual): December 1, 2015

Study Registration Dates

• First Submitted: October 15, 2012
• First Submitted That Met QC Criteria: April 27, 2015
• First Posted (Estimate): April 28, 2015

Study Record Updates

• Last Update Posted (Estimate): March 9, 2016
• Last Update Submitted That Met QC Criteria: March 8, 2016
• Last Verified: March 1, 2016

More Information

Terms related to this study

• Keywords: Questionnaire
• Additional Relevant MeSH Terms: Pathologic Processes; Death
• Other Study ID Numbers: 08-150