Plan for the End

Can you clearly state the medical treatment you want at the end of your life? Many execute a living will to express their desires in case of a terminal illness or end-stage condition. We might not know when a disease is terminal or when that condition has reached the end stage. One challenge is to follow end-of-life instructions when we don’t really know when or why death will occur. That conundrum just confounded the Oklahoma courts.

Perhaps you have a living will. Together with a Health Care Power of Attorney, a Living Will is often part of a Medical directive document. The vagaries of that document can render good planning insufficient.

That Oklahoma case involved a woman (“LAC”) who signed a living will just as symptoms of her disease became debilitating. The document said that LAC would not want “life-sustaining treatment, including artificially administered nutrition and hydration” if she was in a terminal or end-stage condition, or if she was persistently unconscious. While that is the common language in a living will document, it is not necessarily a clear instruction. For example, while a condition like Parkinson’s disease may be utterly debilitating and life-threatening it is not necessarily terminal. Stephen Hawking, who had Amyotrophic Lateral Sclerosis (ALS) continued to lead a productive life although he could not move.

After a few years, LAC’s condition had worsened to the point that she could no longer speak. By early 2021, she required full-time care. Her daughter initially sought to have doctors insert a percutaneous endoscopic gastrostomy tube (otherwise commonly referred to as a PEG tube). The PEG tube provided artificial food and fluids to LAC. Were LAC’s condition terminal or end-stage, then a PEG would NOT have been compliant with her wishes.

A family contest erupted to control LAC’s future.  A guardianship petition filed with the court contested the healthcare choices made.  The judge appointed a guardian ad litem to represent LAC’s interests, an attorney to represent her wishes, and a local lawyer as a neutral guardian. All three met with LAC to assess her wishes about continued tube feeding.

At first, the three attorneys reported that LAC seemed to want her tube feeding discontinued, but they could not be sure as LAC could only communicate “via facial expressions, hand gestures, and by moving her feet,”  Then they met with a hospice nurse who told them that LAC would suffer pain from the removal. They met again with LAC and told her about the likelihood of discomfort. According to the attorneys, LAC seemed to change her mind.

Ultimately, the three court-appointed lawyers were uncertain about LAC’s wishes. The guardian ad litem testified when asked if LAC wanted the feeding to be discontinued: “In our opinion, at the beginning, . . . , it was hard to tell, but we thought that we had a yes answer. But afterward, it was — we are very — pretty sure that she does not want that PEG tub[e] removed because she doesn’t want to feel the discomfort.”

LAC’s daughter and son decided that her living will should now apply and the PEG removed. LAC’s sister argued that LAC had effectively revoked her living will and should continue to receive tube feedings.

The trial judge decided that the placement of the PEG tube violated LAC’s living will and that there was insufficient evidence to indicate that she had revoked her directive. Finally, the tube was removed according to the Court’s order entered in May 2022.

LAC’s sister appealed. The Oklahoma Court of Appeals disagreed with the trial judge and found that LAC had effectively revoked her living will.  On further appeal, the highest Oklahoma court affirmed the trial court decision that the living will was now applicable.

There is a lot of confusion among lawyers (and courts) about questions of medicine and mortality. One hospice nurse’s assertion that there would be discomfort associated with natural death went unchallenged and nearly swayed the attorneys. Via legal wrangling, the courts kept LAC alive for two years until the issue could be resolved.

I was left wondering about the rest of LAC’s planning. In these cases, a comprehensive healthcare power of attorney could have supplemented the living will with further directions as to healthcare when death was not imminent.

Most likely poor communication is at fault. Signing a living will is insufficient if you don’t communicate your wishes clearly to your nearest family or loved ones. Moreover, a Living Will is best used in the context of a comprehensive approach, including open conversations with the people who love us.

Evan J. Krame