Readers may remember the case of Margot Bentley in Canada. Margot had been an activist in favor of euthanasia and suicide and had explicitly stated that she wanted to be dehydrated to death rather than being kept alive if she became incompetent. However, when she became very elderly and was suffering from dementia, she was accepting spoon feeding at the nursing home where she lived. The nursing home didn't want to stop feeding her, despite the fact that her children wanted to force them to stop. The case went to court, and the judge ruled that, since Margot was accepting the spoon feeding, it should be allowed to continue.
In Oregon a very similar case is playing out. Once again, the court and nursing home have made the right decision to continue to spoon feed the patient, but there are disturbing indications that this would not happen if the statutory laws were even slightly different or if the woman were not in a nursing home.
The legal situation is pretty straightforward. The woman, Nora Harris, is not dying, and she is accepting spoon feeding. In fact, she was feeding herself with her hands by eating a sandwich before the spoon feeding was started. Her dementia has progressed to the point that she has trouble using utensils. Oregon law expressly says (rightly) that patients in nursing homes must be offered a certain number of meals a day and must be offered assistance with eating if they have trouble using utensils.
The state ombudsman's representative, responsible for preventing abuse and neglect of people in nursing homes, noticed the sandwich eating and told the nursing home that they should give Nora help eating the hot, cooked meal that was available. I find it mildly interesting that in all the talk of what Nora would or wouldn't want, nobody is saying whether she's been handed a sandwich recently. My guess is that the ombudsman thought she would get better quality food and more enjoyable food by being offered assistance with the cooked food and felt that the nursing home was shirking by just handing her a sandwich. Now, spoon feeding her has become the norm, and her husband and everyone else is quite clear that she would simply be left to starve to death if not spoon fed. I guess that means her husband also doesn't want her to be handed a sandwich!
Anyway, since the statutory law is so clear, the nursing home has to help her to eat, the ombudsman and her court-appointed guardian ad litem insist that she should be spoon fed, and the judge ordered accordingly when her husband, Bill Harris, sued to force the nursing home to stop feeding her.
So, one might say, a victory for the good guys. But it is disturbing to see that in all of this, person after person who is doing the right thing is acting as though this isn't unequivocally the right thing to do but is merely required by statutory law. Listen to the judge talking:
In issuing her decision, Jackson County Circuit Judge Patricia Crain said she could not order the nursing home to stop spoon-feeding Nora because the state ombudsman's office says not helping her eat would be a violation of state law.
"It's not a happy decision for me," Crain told Bill and his daughter during the July 13 court hearing. "From what you describe of your wife and your mom, she would hate this. She would hate it."
Although food isn't being shoved in Nora's mouth, Crain said in some ways Nora is being forced to eat because if she were still competent she would not want the spoon-feeding intervention.
Aw, poor judge. She's so unhappy to have to order that Nora not be starved to death. Because she's sure that she "would hate this." Notice that the judge speaks of Nora almost as if she is already dead. Never mind the fact that she doesn't seem to hate being spoon fed, that she is right now accepting the food. Judge Cain speaks of what she "would have hated" as if the only "Nora" whose feelings matter is a "Nora" who is no more--the fully conscious, talking Nora who, the judge believes, would have wanted to starve to death.
I note this particularly, because it is relevant to any attempt to make "choice" sufficient to protect people in Nora's situation. I say again: No it isn't. Because to a certain mindset (namely, the mindset of the people who actually make the decisions in these scenarios), the only choices that count are the choices made while you were still fully cognizant. Anything else is entirely unreal. It doesn't count as a choice, a request, or willingness. Hence, when Marjorie Nighbert explicitly asked for food, she was denied it and dehydrated to death because she had asked for it after a judge deemed her no longer mentally competent.
So the judge is completely sympathetic to the pro-death position, but her hands are (shucks) tied by positive law.
How about the nursing home? According to Nora's husband's lawyer, they're not terribly enthusiastic about having to feed Nora, either:
"Fern Gardens would have continued to follow Bill's directions, but they had their hands tied. The facility didn't want to clash with the state ombudsman's office," Broesder says.
The only people who are showing some faint grain of sense are the ombudsman's office and the guardian ad litem, who are actually (shocker) doing their job.
Eric Foster, an attorney appointed by the court to represent Nora, argued in court documents that Oregon law requires Fern Gardens to assist Nora with eating.
He noted her advance directive did not explicitly say she did not want help eating, plus it stated her husband could decide to withhold only artificial nutrition and hydration on her behalf.
"Since Mrs. Harris did not include specific instruction that she not be helped with eating, the evidence is not yet clear and convincing Fern Gardens should not help Mrs. Harris eat," Foster wrote.
Foster also argued, "The best evidence of whether Mrs. Harris should be provided with food assistance is her current desire to eat. Mrs. Harris could consistently refuse to eat, if that was her desire. If she refuses meals in the future, Fern Gardens will not pressure her to eat."
He wrote Nora should be given the chance to satisfy her hunger through assisted eating, and should not be deprived of the comfort and social interaction that help with eating provides.
Bill Harris complains that, God forbid, Foster is "representing the state ombudsman's view." Um, yes, perhaps that's because he agrees with it, both as a matter of legality and as a matter of morals. It hardly follows that, as Bill alleges, he is "not looking out for her best interests"!
Nonetheless, here's a disturbing quote from the ombudsman's office itself:
Fred Steele, agency director of the state Office of the Long-Term Care Ombudsman, says his office's mission is to make sure people in long-term care are treated with respect and their rights are protected.
"This is an extraordinarily difficult situation," Steele says of Nora's case. "This case highlights the difficulties of how we advocate for residents who can't communicate for themselves."
Steele says there is a legal question about whether advance directives can be used to express a wish not to be assisted with regular feeding.
"Advance directives don't usually address regular food. The advance directive form only speaks to artificial nutrition," he says. "This case is not dealing with artificial nutrition and that's the complication. It's an open legal question that might have to play out with the courts or the Legislature."
No, it's not an open legal question. It's an open-and-shut legal question, and the ombudsman's own office has pressed for the law to be followed. What Steele really seems to be doing here is inviting, almost asking, the Oregon legislature to change the law so that family members can tell nursing homes to stop spoon feeding patients because they are sure they would have wanted to starve to death!
The words of a lawyer who came in to testify as an "expert witness" on the side of Nora's husband are rather telling, though unintentionally so:
Cheri Sperber, owner of the Ashland-based aging issues company Gray Matters Consulting, says she has prepared thousands of advance directives for clients, but the issue of assistance with regular eating hasn't come up until now.
"That's something I'm going to discuss now with my clients," she says. "That's something most people don't think about."
Sperber served as an expert witness for Bill in his attempt to stop the spoon-feeding of his wife.
She says Oregon Administrative Rules that require nursing facilities to provide patients with eating assistance are meant to prevent abuse and neglect.
"They get help so they're not just sitting there starving," Sperber says.
Please tell me, Cheri, if Fern Gardens had stopped spoon feeding Nora as Bill wants them to, how she would not just be "sitting there starving." How would that not be abuse and neglect? Isn't it sort of the whole point that Bill wants her to be sitting there starving instead of being fed?
Let's parse this out: What Cheri Sperber and Bill Harris and others on their side want to say here is that there would be some kind of postmodern distinction between mere neglect, in which Nora is simply forgotten, and deliberate neglect, in which Nora is deliberately left starving because everyone has sat and pondered and decided that she "would have wanted" to be starved to death. (Question: Is she sipping water from a straw or what? What about hydration? This isn't mentioned in the article, but I have a sinking feeling, given all that Bill Harris is saying, that he would have ordered hydration stopped as well.)
Oh, well, that would make it fine, right? Deliberate neglect is non-neglect, by the waving of a magic ethical wand.
Oh, and maybe she'd be doped up, too, so that's presumably again supposed to be why she wouldn't have just been "sitting there starving."
Bill says with palliative care to ease any suffering, his wife could have passed away by now in a relatively peaceful way — if not for the spoon-feeding.
"Palliative care to ease any suffering," aka drugs.
So: Being doped up after the nursing home and your relatives decide that you would want to die of starvation and/or dehydration and then sitting there starving isn't really just sitting there starving. Got it. Thanks for clearing that up for us, Cheri.
It will be interesting to see which state is the first to change legislation to legalize this explicitly. So far, it hasn't happened, though people are in fact dehydrated to death all the time, all over the country, if it is deemed that they would otherwise need artificial nutrition and hydration. A different nursing home and a different ombudsman might have simply gone along with Bill Harris by reasoning that there is a faint risk of choking to Nora from the spoon feeding. Hence, she "needs" artificial hydration and nutrition. But her advance directive expressly rejects artificial nutrition and hydration. Voila! A legal argument for not giving her nutrition and hydration at all. All taken care of. Indeed, as time goes on, if she has even a single coughing or choking incident with the spoon feeding, that will in all probability actually happen.
But for the moment, she's being fed. A small victory, and one with a dark cloud hanging over it, but a real one.
Be sure you write up your own desire for food and water very explicitly.