Clinical trial NCT02428504: Decision Making in End of Life as Individual Preferences
Official title: Decision Making in End of Life: Individual Preferences
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Terminal Diseases
Keywords: Questionnaire
Lead sponsor: St. Luke's-Roosevelt Hospital Center
Sponsor class: OTHER
First posted: 2015-04-28
Enrollment: 148
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Time perspective: PROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Patients from Oncology, Pulmonary and Heart Failure.

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.

Eligibility criteria: 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

Primary outcomes:
measure: DECISION MAKING IN END OF LIFE: INDIVIDUALS PREFERENCES
timeFrame: 1 year
Secondary outcomes:
measure: DECISION MAKING IN END OF LIFE: INDIVIDUALS PREFERENCES
timeFrame: 1 year
Other outcomes:
Locations:
city: New York
country: United States
facility: St. Luke's Roosevelt Hospital Center
state: New York
Study officials:
affiliation: St. Luke's-Roosevelt Hospital Center
name: Hassan Khouli, MD
role: PRINCIPAL_INVESTIGATOR
References: