Two items published in February impressed us. One on the fragility of life and the effect of decisions we make. Second, we make decisions before we know the facts. The second is changing.
A recent article in the New England Journal of Medicine reported the results of a twenty-year study in China. The participants were from 45 to 65 years old with no prior cognitive deficits. They were recruited for a long-term study. One purpose was to attempt to correlate biomarkers of Alzheimer’s disease from those cognitively normal among the Chinese.
The subgroup selected for the study underwent testing of spinal fluid, cognitive assessments and brain imaging at two-to-three-year intervals. Eventually, 648 participants who developed Alzheimer’s disease were matched with 648 participants with normal cognition. The trajectories of the biomarkers, cognitive testing and imaging were analyzed in the two groups.
Conclusion, in lay terms, the biomarkers indicated who developed Alzheimer’s and who remained cognitively normal. These biomarkers had been noted in other studies not including the Chinese.
Noted in the study were that samples taken twenty years ago were able to be preserved and more modern techniques for biomarkers were able to be used to test them. This brings some uniformity to the testing techniques.
Some time in the future we will be able to test ourselves to determine our proclivity for Alzheimer’s. This is true of other diseases as well.
The Oklahoma Supreme Court rendered a decision on a right to die case involving an advance health care directive. The Oklahoma Health Care Law is a little different then Delaware law. The ultimate decision might be different. But that does not change the story.
In re the Guardianship L.A.C., whom we will call LAC hereafter, the Oklahoma Supreme Court reversed the Oklahoma Court of Appeals, which hard reversed the Oklahoma trial court. LAC began to suffer from progressive degenerative diseases in 2011. LAC’s daughter filed for guardianship in December 2011. LAC did not like that and opposed the daughter’s petition, which was dismissed. LAC then executed both powers of attorney for healthcare and property, naming LAC’s sister as agent, not her daughter or her son in 2013.
In the 2013 healthcare directive, LAC specifically directed that “my life not be extended by life-sustaining treatment, including artificially administered nutrition and hydration. …” In March 2018 she lost her ability to speak. On May 12, 2021, the daughter filed for an emergency guardianship when LAC was hospitalized for aspiration pneumonia. The Court granted the emergency guardianship and the daughter authorized the insertion of a percutaneous endoscopic gastronomy (“PEG”) tube to hydrate and feed LAC contrary to the terms of the advance directive.
The sister objected to the guardianship as she was named the agent under the powers of attorney. The court then named an independent party as Guardian Ad Litem (“GAL”), suspended the advance directive and ordered that the PEG tube remain in place until the matter could be resolved. On September 22, 2021 an agreement was reached and the court appointed an independent General Guardian, who like the Guardian Ad Litem, was an attorney.
In the four-month span that the GAL was in place, the GAL issued two reports to the court, both indicating that LAC wanted the PEG tube removed. Daughter then filed her third attempt to become guardian of LAC. She asserted that the PEG tube she requested be inserted, be removed. The son objected to his sister’s attempt to become guardian, but agreed the PEG tube should be removed. The sister, who as agent under the powers of attorney was tasked with enforcing LAC’s wishes, oddly objected to the removal of the PEG tube notwithstanding the specific direction of LAC’s directive to never insert one.
The trial on whether to remove the PEG tube began on April 13, 2022, eleven months after the second guardianship petition was filed. And nine years after LAC signed legal documents stating she did not want a guardianship and did not want a PEG tube. The GAL issued a third report.
At the trial, the GAL testified that she, LAC’s attorney and the court appointed Guardian visited LAC to determine what was LAC’s view. Although no detail is presented regarding the mode of communication after some time it was apparent to the three attorneys that LAC wanted the PEG tube removed. While taking a break, a hospice nurse mentioned that removal of the PEG tube would cause LAC pain as she starved to death. After discussing this with LAC, the three attorneys felt that LAC then did not want the PEG removed.
Of course, the physician for LAC, and the hospice nurse testified at trial that medication would ease any discomfort that LAC might feel if the PEG tube was removed. One gets the feeling that three attorneys meeting and struggling to understand LAC and the medicine is reminiscent of a comedy of errors but for the sober reality.
The trial court ruled there was a lack of proof that LAC had revoked the directive not to have a PEG tube inserted and ordered it be removed. The Court of Appeals applied a different standard and held LAC had revoked the directive. The Oklahoma Supreme Court decided that in Oklahoma, the standard of proof for revocation of a health care directive is clear and convincing evidence. Although basing its decision on Oklahoma statutes, the Court noted consistency with the United States Supreme Court decision in Cruzan v. Dir. Missouri Dept. of Health, 497 U.S. 261 (1990) at 282, that a state could require clear and convincing evidence of a health care decision by an individual since the interest at stake is more important and substantial than mere loss of money.
The Oklahoma Supreme Court decision was issued on February 6, 2024. This is almost three years after LAC was hospitalized and then institutionalized in a facility. It was more than ten years after LAC had decided how she wanted to be treated if she needed artificial hydration and nourishment.
Like all court opinions, there are unanswered questions. Did not the sister of LAC as agent know LAC’s wishes? Did not the children? Why did the daughter request the PEG tube be inserted and then request it be removed? How could the three attorneys attempting to discern LAC’s wishes be so misled by a casual statement of a nurse.
The lesson of LAC?
It is difficult to predict years in the future how one will feel about medical decisions when one must live with it in real time. That one cannot predict whether one’s health care agent will honor your wishes. Over time circumstances and your agents change. Perhaps LAC’s sister in 2013 was not the same person in 2022.
Was there an attempt to bring the family into harmony prior to 2021?
Why was not a POLST executed before 2021?
POLST is a part of advance care planning which helps individuals make careful, medical decisions which will be binding on all, including health care providers. POLST goes by different names in different states. In Delaware it is called DMOST. The concept is the same in all states. When one is seriously ill or has less than a year to live, the patient and the physician discuss and decide what medical treatment you want. You sign it and the physician signs it. It then becomes a medical order that is to be honored by all. Oklahoma has had a POLST since August 26, 2016.
A POLST is effective when it is signed. Unlike an advance directive which becomes effective when one cannot communicate for oneself.
Medical science is making it possible for us to know what diseases we will likely incur. The law is granting us the ability to make binding choices in advance.
Will we make them wisely?
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Jia, J., M.D., Ph.D. (2024). Biomarker Changes during 20 Years Preceding Alzheimer's Disease. The New England Journal of Medicine. February 22
- IN RE: GUARDIANSHIP OF L.A.C., 2024 OK , 0 P.3d 30
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