Clinical Bioethics Blog : Bioethicist : Bernard W. Freedman : Medical Consulting, Ethics, End of Life Decisions

 It has been 17 years since this bill was first introduced.

The New York State Senate will pass the Family Health Care Decisions Act (FHCDA), setting forth clear guidelines for family members and others close to the patient to make medical decisions for incapacitated patients. It will also provide physicians with uniform protocols to follow. In many instances there will continue to be confusion and concern for the rights of the patient. Diligent and thoughtful efforts will be needed to apply these guidelines properly. The following are some of the important points for clinicians:

If there is disagreement about whether the individual lacks decision-making capacity, the matter is referred to the hospital or nursing home ethics committee for resolution.
 
       
The FHCDA directs the surrogate to make decisions in accordance with the patient’s wishes, including the patient’s religious and moral beliefs. 

A surrogate may withhold or withdraw life-sustaining treatment for an individual if that individual will die within six months with or without treatment, as determined by two independent physicians, and treatment would be an extraordinary burden to the patient.

A surrogate may also withhold or withdraw life-sustaining treatment if the patient has an irreversible condition, as determined by two independent physicians, and treatment would involve such pain, suffering, or other burden that it would be inhumane or extraordinarily burdensome to provide treatment under the circumstances. 

 
For Individuals Without a Surrogate:

The attending physician to act as surrogate for routine medical treatment. 

For major medical treatment, a physician may act only upon the concurrence of another physician that such major medical treatment is necessary. 

A physician may withhold or withdraw life-sustaining treatment for individuals without a surrogate only upon the independent concurrence of another physician that life-sustaining treatment offers no medical benefit to the patient because the patient will die imminently and the provision of life-sustaining treatment would violate accepted medical standards.

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  This is the year the old ones,
the old great ones
                leave us alone on the road.
                                           -  Denise Levertov, September 1991

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 Dementia is now a leading cause of death in the United States

A study was published this week in JAMA (Journal of the American Medical Association) regarding nursing home patients with advanced dementia and who have feeding tubes inserted. The results showed that the frequency of feeding tubes is  greater in for-profit hospitals versus government or state owned hospitals. 

"A higher rate of feeding tube insertions also was independently associated with for-profit ownership vs hospitals owned by state or local government...

White residents had the lowest likelihood of feeding tube insertion, while black residents experienced nearly a 2-fold increase in the likelihood of feeding tube insertion...

Written advance directives, do not resuscitate orders,and orders to forgo artificial hydration and nutrition were independently associated with lower likelihood of feeding tube insertion."

Previous studies have found that the survival rate of patients with advanced dementia who have feeding tubes are not improved. It is estimated that one-third of nursing home residents with advanced cognitive impairment have feeding tubes inserted and the majority of these tubes are placed during acute care hospitalizations. Thereafter, many chronically ill patients continue to be maintained on tube feeding in ICUs in the last six months of life.

The use of advance health directives decrease the rate of patients on feeding tubes. Yet, as dementia advances it becomes increasingly difficult to obtain advance orders from patients who have lost the capacity to make decisions for themselves. It is estimated that the prevalence of dementia is 6% to 10% of people over 65, and thereafter continues to increase with age. The number of people aged 65 years and older is expected to increase from 35 million in 2000 to 71 million in 2030. The number of people aged 80 years and older is also expected to more than double,from 9.3 million in 2000 to 19.5 million in 2030.http://www.cdc.gov/pcd/issues/2006/apr/05_0167.htm

Failure to obtain advance health directives grievously impacts the lives of these patients and caregivers as well. 

Early detection of dementia and early intervention to fully inform and ascertain the wishes of patients are therefore of great importance. Such efforts must be translated into public policy.

 A face to face meeting between physician and patient or surrogate, clearly noted in the record, establishing an actual informed consent is the most reliable. This honors the patient's dignity, and also protects physicians and hospitals from claims of wrongful death or physicians assisted suicide.

Further comments by the authors of the study published in the JAMA study are available, at http://www.eurekalert.org/pub_releases/2010-02/bu-sec020810.php

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A verdict was rendered yesterday (Feb. 2, 2010) in Oregon City Oregon finding Jeffrey and Marci Beagley, Oregon City's Followers of Christ Church, guilty of criminally negligent homicide in the death of their 16-year-old son, Neil. Their son died in June 2008 due to a chronic undiagnosed urinary blockage. Neil became significantly ill about one week before his death due to renal failure. He became weak, could not get out of his bed, and had pain in his abdomen and restricted breathing. Jeffrey and Marci Beagley’s Christian faith called for them to seek healing from the Lord and thus as Neil became worse his parents attempted to heal him with prayer, anointing with oil and laying on of hands. It was uncontested that earlier intervention would have saved his life.

A physician and bioethicist, Dr. Douglas Dickema, testified at trial that it was reasonable for the parents fail to seek medical attention because: "If you don't think your child is dying, you may not bring them to the emergency room." For example, he said: "It may take three days of (a child having) seizures to get them into my emergency room."

Dr. Dickema is the chair of the Committee on Bioethics of the American Academy of Pediatrics. It seems that Dr. Dickema did not testify as a bioethicist but as a physician who represented that he knew what was a reasonable expectation of when a parent should seek medical attention for their child. Legally, however, the standard is what a reasonable parent would do in similar circumstances.

It was often repeated during the trial that Neil himself told his parent that he did not want to go to the doctor. Aside from the fact that he was 16 years old, he did not have the benefit of being informed as to the risks, including death, of refusal of treatment.

A study at the University of California at San Diego from 1975 to 1995 found that of 175 children 140 children died because treatment was withheld based upon religious beliefs.  There was a >90% survival rate of the children who died if treatment had be instituted.

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Boston University School of Public Health researchers reported that older, male patients receiving care from the Veterans Health Administration (VHA) health care systems had better health outcomes than those in privately managed care plans that are part of the government-run Medicare Advantage program using private contracted managed care.

Two surveys were done on 107,300 men, ages 65 and older, between 1999 and 2003.

VHA care was found to be more effective that the privately contracted Medicare Advantage program. This was true for the average elderly male patient cared for in the VHA as well as for vulnerable sub-populations."

These sub-populations included those 75 years of age and older, and those diagnosed with hypertension, diabetes, coronary artery disease or chronic heart failure.

Patients receiving care in the VHA after two years were 3 to 10 percent more likely to be alive with the same or better physical or mental health than those in the Medicare Advantage program after two years of care, the study concluded.

Authors of the study: at Boston University School of Medicine and School of Public Health

Lewis E. Kazis, Sc.D. - Professor Health Policy;

Alfredo Selim, MD  - Assistant Professor of Medicine

Dan Berlowitz, MD, Professor of Healthy Policy and Management:

James A. Rothendler MD, Assistant Professor of Health Policy and Management;

Avron Spiro III, PhD Associate Professor of Epidemiology and,

Donald Miller, ScD, Associate Professor of Health Policy and Management.

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The Senate Judiciary and Public Affairs committee in New Mexico passed (5 to 4) the Domestic Partnership Bill - 800 pages long that gives unmarried same-sex and opposite-sex couples the legal protections and benefits of married couples on issues including medical decision-making. It is anticipated that republicans will oppose.

It must be made clear that patients are not restricted in nomination who ever they want to act as their surrogate decision makers. It is the person who best knows the patients wishes and values that should act as the surrogate decision maker in all instances.

Some states provide for priorities to family members, for example, calling for the spouse to make decisions, if they agree. The patient however can overrule this by nominating who they wish, irrespective of family or other relations.

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