When Going To Die Becomes Supposed To Die

 

By Jennifer Warner

JenniferWarnerAndGrandmother

Physician-assisted suicide (PAS) is often touted as essential for patient autonomy. However, apart from the immorality of helping to end a life, not enough attention is given to how PAS might also be misused by people with selfish aims.

 

In 2014, shortly before the End of Life Option Act (which decriminalized PAS) began wending its way through the California legislature, I learned a bitter lesson: a law that is meant to protect the rights of the infirm can be used as a vehicle for violating those very rights.

 

In July 2014, my grandmother–who raised me as her own child–went under probate conservatorship. Previously, I was caring for her and had medical power of attorney, but I did not have access to the money needed to pay for her expensive in-home custodial care. So, I agreed to allow a licensed professional fiduciary to become her court-appointed conservator, subject to the California Probate Code. Pursuant to this code, I was promised that the conservator would make decisions in accordance with my grandmother’s wishes. It was also understood that the conservator would share medical consent with her, which meant that he could not force any medical treatment on her, unless it was an emergency. Also, he was to be supervised by the court.

 

A soon-to-be centenarian in the last stages of congestive heart failure, Grandma’s simple wish was to live out the remainder of her life in her own home, surrounded by family. But the conservator had a different agenda.

 

Soon after taking power, the conservator put Grandma on hospice care and signed a do-not-resuscitate order on her behalf. He began isolating her from family members and withdrew permission for us to communicate with her medical professionals, including hospice staff. Then–completely out of the blue–he informed us that Grandma’s health had suddenly declined, and she was in need of mandated bed rest and an end-of-life cocktail that included liquid morphine. The clincher: he said the hospice predicted that she would be dead within the month.

 

No One Asked Grandma

 

It does not seem out of the ordinary for a very old woman receiving hospice care to have a sudden decline in health. The problem was that we, her family, did not observe any sign of decline. She was still walking around the house, had a robust appetite, and was talkative and upbeat. We were planning her 100th birthday bash, and she was counting down the days until she would blow out her candles.

 

We saw no need for a powerful narcotic, as Grandma was not complaining of pain. In fact, she had always avoided strong medications. She even put up a fuss about taking Tylenol. Everyone–including her conservator–knew this. Yet I watched in horror as the morphine was brought into her home, and her caregivers were instructed to put it under her tongue if they thought she needed it. No one asked Grandma if she wanted morphine, so I took it upon myself to do so. She emphatically answered that she had no interest in taking morphine under any circumstances.

 

In spite of her wishes, the conservator increased his efforts to give it to her, and told me numerous times that he or the caregivers could administer the morphine, but not the family. Therefore, I filed paperwork with the court to stop them. I also petitioned the court to have the restrictions on my visits overturned and for clarification regarding how the end-of-life medications would be handled, including who could administer them. The conservator stated before the judge that he had the power to administer morphine himself.

 

Then came the chilling revelation that no hospice staff had actually told the conservator that my grandmother was on the brink of death. I could draw only one conclusion: the conservator was trying to shorten Grandma’s life by giving her drugs she did not want or need.

 

Why would he do such a thing? I will never know for sure, but it may have been because I had agreed to make him sole trustee of my grandmother’s large estate, upon her death. Relying on the benevolence of a court-appointee who portrayed himself to be a compassionate father figure and devoted churchgoer, I had unwittingly given him the financial incentive and the power to snuff out my grandmother’s life.

 

Worse still, with all of the power he wielded as her conservator, he was in a position to continue pushing his agenda, even after he realized I was onto him. For over two months he continued to look for any excuse possible to push morphine on my grandmother. I pleaded with Adult Protective Services, local law enforcement, and eventually the probate court to investigate his actions and to protect my grandmother, but my pleas went unheeded.

 

She never received a drop of morphine–only because she had family members who stood between her and the conservator. The threat was finally removed when the hospice personnel decided to withdraw from her case and took their drugs with them. Grandma went on to live another whole year without hospice care and without needing any drugs. And she celebrated her 100th birthday in style.

 

Too Much Power, Too Little Accountability

 

Having experienced this nightmare, I am terribly concerned about the unintended consequences of California’s End of Life Option Act, which is slated to go into effect on June 9. Like conservatorship, legalized PAS is meant to be a last resort for people who see no way out of a crisis. Its premise is that those charged with assisting the desperate person are compassionate helpers with noble intentions.

 

As my grandmother’s case demonstrates, conservatorship in the wrong hands can be harmful to a vulnerable person. Likewise, the End of Life Option Act gives one human being the power to end the life of another human being who is vulnerable due to illness.

 

This act leaves the door wide open for abuse because it gives one attending physician a huge amount of power with almost no accountability. The attending physician is responsible for determining that the patient is terminally ill (that is, in the doctor’s estimation, the patient has six months or less to live) as well as explaining the End of Life Option and its alternatives to the patient. Furthermore, this physician, whether or not he is qualified to do so, is supposed to determine that the patient is competent to give medical consent, is not displaying signs of a mental disorder that could impair judgment, and is not being unduly influenced to choose PAS. So, the patient will likely be relying upon this one doctor for all of the information needed to make an informed choice, and the same doctor must decide whether the choice is a valid one.

 

This same attending physician prescribes the lethal drug. Also, while not required to do so, this physician is allowed to prepare the drug, deliver the drug (see California Health and Safety Code, Section 443.5(b)(1)), and act as the only witness to the ingestion of the fatal drug–presumably self–administered by the patient.

 

From start to finish, it is possible for the attending physician to carry out PAS with almost no interference, even from the patient’s loved ones. The law specifically states that the attending physician has to have a discussion with the patient “outside of the presence of any other persons” (Section 443.5(a)(4)) and that a patient’s request cannot be denied because he or she “declines or is unable to notify next of kin” (Section 443.5 (a)(5)(C)). Translation: even if the patient showed every intention of including family members in medical decisions, the doctor can simply claim that the patient communicated in private that he or she wanted this one decision to be kept a secret.

 

The only outside documentation of the patient’s request for suicide comes from the consulting physician and the two written requests that are supposed to be signed by the patient. However, a closer reading of the law reveals that these also pass through the attending physician. The attending physician makes the referral to this “independent” consulting physician, so it would not be difficult to find another doctor who shares his agenda, especially since, according to the California Medical Association’s analysis of the End of Life Option Act’s legal requirements, “The law does not define ‘independent.'” Furthermore, the consulting physician does not submit his or her documentation directly to the California Department of Public Health (CDPH), but to the attending physician. The same is true of the written requests signed by the patient. The patient’s first request must be submitted by the attending physician to the CDPH within 30 days of writing the prescription. The patient could be dead by then.

 

As if these facts are not bad enough, the attending physician does not have an affirmative obligation to determine whether the lethal drugs are used, when they are used, whether anyone witnessed their use, or what happened to any remaining drugs. Once the drug is prescribed, there is no one providing direct supervision over what happens next, including ensuring that the patient still actually wants to take the lethal dose. So, in addition to having immunity from all liability, as long as he or she acts in “good faith compliance” with the law (Section 443.14(b)), the attending physician can always fall back on plausible deniability (i.e., claim innocence by denying knowledge of or involvement in certain events).

 

Opening the Door to Invisible Crime

 

The End of Life Option Act makes it possible for a person to be ushered into death without the person’s loved ones knowing what happened. The attending physician does not need to inform anyone of the request for suicide, and the act could be committed when the doctor is alone with the patient. The doctor will presumably tell everyone that the patient died of natural causes, and the death certificate will confirm it because actions taken under the act “shall not, for any purposes, constitute suicide, assisted suicide, homicide, or elder abuse under the law” (Section 443.18).

 

Assuming adherence to the law, the patient’s medical record will indicate PAS, but would a family think to ask for these records? The documents submitted to the CDPH are confidential and cannot be discoverable (Section 443.19(a)), so it is improbable that family members will be able to access this information. Indeed, this law makes it difficult to detect suicide, let alone confirm that it was voluntary. Besides, who will investigate the matter if there is suspicion that it was not? The act is silent on this point.

 

I shudder to think what might have happened if the End of Life Option Act had been available to my grandmother’s conservator. It is plausible that she would have been a candidate, since she was considered “terminal” and retained her ability to consent to her own medical treatment. The conservator could have “shopped” for one additional doctor who was willing to overlook my grandmother’s wishes. Her attending physician likely would have been on board, since he ignored her wishes regarding the morphine. With the “aid in dying” prescription in hand, the conservator could have had it delivered directly to himself and given it to my grandmother while alone with her. This all could have been accomplished under the cover of confidentiality, since, as conservator, it was his legal prerogative to exclude the family from medical decisions.

 

Instead of having received an email telling me that my grandmother had suddenly declined and was going to need end-of-life medications, it is likely that the conservator would have told me that my grandmother had passed away in her sleep–from natural causes, of course.

 

Jennifer Warner is a mental health professional and elder advocate. She lives in the San Francisco Bay area. For more information, see the video A Centenarian’s Conservatorship Story at https://youtu.be/X7QU85_vEF4.

 

References:

 

California Health and Safety Code, Division 1, Part 1.85: End of Life Option Act(Section 443),https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=201520162AB15.

 

California Medical Association Legal Counsel, Document #3459The California End of Life Option Act, (CMA On-Call Online Health Law Library, January 2016), http://www.cmanet.org/resource-library/detail/?item=the-california-end-of-life-option-act.

 

 

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