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In this episode, we sit down with patient advocate Althea Halchuck to discuss the importance of advance directives in end-of-life care. We delve into the story of Dr. Gerald Greenberg, a New York dentist who was diagnosed with early-onset dementia and executed a living will stating his preferences for end-of-life care. Despite this, he was subjected to unwanted medical treatment that prolonged his life and caused him immense pain and suffering.

Althea will discuss the growing trend of wrongful prolongation of life lawsuits and the duty of medical providers to follow a legally executed advance directive or medical order. She will explain the legal precedent set by recent cases and the importance of creating an advance directive before becoming incapacitated. Join us as we explore the consequences of not following a patient’s wishes and the right to refuse medical treatment, even if it may result in death.

Althea Halchuck is a patient advocate.

She shares her story and discusses her KevinMD article, “What’s the sense of having a living will if it’s not honored?”

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Transcript

Kevin Pho: Hi, and welcome to the show. Rate and review at KevinMD.com/rate. Subscribe at KevinMD.com/podcast. Today we welcome back on the show Althea Halchuck. She’s a patient advocate. Her KevinMD article is titled “What’s the sense of having a living will if it’s not honored?” Althea, welcome back to the show.

Althea Halchuck: Thank you, Kevin. It’s great to be here.

Kevin Pho: So we’ll get into your article in a little bit, but for those who didn’t listen to our first episode together, just briefly share your story and journey to where you are today.

Althea Halchuck: OK. I’m a patient advocate, a certified patient advocate. I started Ending Well Patient Advocacy in order to help people experience a peaceful death, a good death, the death they want. In that journey, I got a law degree, and I’m a certified thanatologist, so I can educate people about end-of-life topics.

I have a contract with the Final Exit Network as their surrogate consultant. They developed a program for people who are the surrogates, proxies, or health care powers of attorney for other people. If they’re in a setting like a medical setting and they get some kind of pushback about any kind of treatment, and they don’t think that’s right, they can call me, and I can review the paperwork and tell them what their options are. I don’t give them medical advice or even legal advice, but really, I just point out, you know, the road they can take, and maybe what kind of conversation they can have, to empower them to have the conversation with a medical provider.

And that’s how I ended up with this topic. With the surrogate consultant service, I get a lot of calls from people, mostly surrogates for a loved one. Either the person has got dementia or is in a long-term care facility, and they’re incapacitated, and now the surrogate has to make some medical decisions. They’re trying to go by the road map of the advance directive, but they’re getting some kind of pushback. And so that kind of led me to the latest type of medical malpractice case, which is the wrongful prolongation of life. That’s really the topic of my latest article for you. It’s keeping people alive against their will, basically.

Kevin Pho: So let’s go straight into your article and talk about the case that kicked it off. Tell us a little bit about the background of that.

Althea Halchuck: OK, well, there was a dentist in New Rochelle, New York, and he was diagnosed with early-onset dementia. He was only in his 50s, in 2011, and he immediately drafted his advance directive with a provision that he did not want to be kept alive if it came to where he couldn’t recognize anybody. That was the point where he said, “Just comfort care. I don’t want intravenous fluids. I don’t want antibiotics. I don’t want any kind of ‘treatment,’ because it’s not going to do me any good. I’d rather just go peacefully.”

But he was in a long-term care facility, and he fell somehow. He ended up out of the bed. He didn’t recognize his wife, who was the health care power of attorney, or his two adult children, and they bring him to the hospital, the wife and the children. He had a MOLST, by the way, or POLST, whatever state you’re in. It’s the medical orders for life-sustaining treatment, and it said comfort care only, nothing else.

Well, a doctor in the emergency room, I’m guessing, knew all this, because she told him. The wife talked to the doctor, and so did the sons, and they provided the POLST, the advance directive, everything. And he proceeded to give Dr. Greenberg antibiotics, because he had a bad infection. So he got antibiotics, he had a CT scan, he got intravenous fluids. I mean, he had all these things that he didn’t want. The antibiotics kept him alive an extra month, and his wife and children had to, you know, be a witness to his suffering. So they sued.

For many years, these types of cases were normally thrown out of court. The doctor, the provider, the facility, you name it, had some kind of blanket immunity, where whatever they did was OK. They kept somebody alive, so how could that be wrong? And because of that, people, really lawyers, didn’t want to take the cases.

But there was a case in Georgia. A young girl was her grandmother’s surrogate, and the grandmother didn’t want to be intubated. She didn’t want to be on any kind of life support. The granddaughter was in her 20s. She was young, but she was really a great surrogate, and she told everybody this. The grandmother told her friends, everybody, her health care providers. Well, lo and behold, they intubated her, they put her on a ventilator, they kept her alive, and the granddaughter sued.

And what happens is, the lawsuit happens in 2013 or 2014, whatever it is, but it takes so long to go through the courts with all the appeals. It’s one appeal after another; it keeps getting thrown out of court. And then finally, the Supreme Court in Georgia took a look at it and said no, this is wrong. She has a right to say no to treatment, even if it’s life-saving treatment, and it’s her decision. It’s her surrogate’s decision that rules here, not a provider who thinks they know best. So they settled that case for a million dollars, and that was one of the biggest and first huge settlements.

And because of that, the floodgates are open. People have the right to make their own health care decisions. The Patient Self-Determination Act from 1990 says that you have that right, and just because the provider doesn’t agree with it doesn’t mean it’s wrong. So that’s kind of where the trend is.

And I will say, the Greenberg case hasn’t settled yet, but I know it’s going to. I just feel it, because they don’t want these cases to get before a jury, because they’re so emotional. I mean, how can you not feel for a wife who told them not to do anything, and they did everything? It’s heartbreaking.

And then in some of the cases, they have to, like the granddaughter, who had to take her grandmother off life support. So this was something the grandmother didn’t want, and now she comes along and she has to say, “OK, let’s wean her from the ventilator.” I mean, that’s just so emotional and so heart-wrenching, and she’s never going to forget it. I mean, it affected her whole life. So a million dollars sounds like a lot of money, but in the long run, I think she would rather not have had to go through this whole process.

Kevin Pho: Now, in the majority of the cases, and you could talk about the Greenberg case, but in your opinion, why do medical institutions and clinicians sometimes continue treatment despite these advance directive orders?

Althea Halchuck: From people that have done studies about this, I think it’s sometimes more of a communication problem. Like, somebody comes into the emergency room, and this doctor’s never seen this patient before, and instead of asking, “What’s the code status?” he just immediately goes into CPR. That’s it: “We’re going to keep them alive.” So that’s one problem. Another problem is when they have the advance directive in their hand, and there’s a miscommunication, or they don’t follow policy or a protocol. I mean, really, it goes right back to education.

And I think if somebody came into the emergency room, the first question should be, “What is the code status?” from whoever brought them in, a family member, the surrogate, if there is one. A lot of times there isn’t, and so they have to default to saving the life. But these are not those cases. In these cases, people had a clearly defined advance directive of what they wanted.

And sometimes it’s ego. The doctors are trained to keep people alive; they’re not trained to let them die. And I think you see a lot more in palliative care, where those doctors accept it when a patient says, “You know, I’m done. I don’t want any more chemo. I don’t want any more of this. Just let me go comfortably.” But, you know, in an emergent situation, that can’t always happen if they don’t have access to the documents, which is another issue.

So it can be many reasons, but in the cases that I’ve studied, it’s really people, providers. In one case in California, it was the social services. These people took the right away from a guy’s, I think it was his mother. She was his health care proxy, and they stripped her of that, and they made decisions for this guy. Well, they signed fraudulent documents. I mean, why would anybody do that? It’s just beyond belief. And for those people, it was a crime, so they have to face criminal penalties.

But in other cases, it’s just a matter of, no matter how much the surrogate says, “No, don’t do that,” the doctors just either try to placate them or talk them into something else. And this is why, with my work with Final Exit, you know, I’m a mediator, basically, and that’s what I do: try to bring the parties together to some kind of resolution. But often in these cases, if it clearly says don’t do it, and the doctor wants to do it, how can you? I mean, it’s really kind of letting the doctor know this is unacceptable, and we really need to follow the directive and what the patient wants.

Kevin Pho: Do you have a sense of how wide the scope of this is? Are there any studies? Is there any data that can articulate how often this happens?

Althea Halchuck: I don’t think there are a lot of studies about it, because it’s so new. These cases just started appearing, like, you know, in the settlements, like in 2015 and 2016, and in the course of legal history, that’s really a short period of time. But it’s almost like, you know, once, and it isn’t even the doctors, once the legal team hears about it, once the insurance company hears about it, and once the CEO of a hospital hears about it, they have to really train the staff to say, “You can’t go against the advance directive. That’s it.” The advance directive is the Bible; you cannot go against it.

So I can’t say, but every one of the cases, and, you know, I’ve done a lot of presentations on this, every case that I present, they’re from all over the country. It isn’t one region or another. It isn’t one political party or another. It’s really so egregious that they’re happening all over the country.

And I think a lot of lawyers now, plaintiff lawyers, are saying, “Well, you know what? We can fight this, and we can win.” But it takes a lot of money and a lot of time. And the lawyer in Georgia, when they settled that case, said, “We wanted to shout it from the rooftops because they were wrong.” You know, they admitted, well, they probably didn’t admit they were wrong, but they paid a million dollars, so that tells you enough of what you need to know, and more are happening.

And that’s why I said that about the Greenberg case, because the defendants just hit their last appeal. And so once that happens, now it’s going to go forward to a jury trial, and that’s when settlements start happening, because, like I said, it’s so emotional. You don’t want to have these cases in front of a jury. You think a million bucks is a lot of money? Let it go to a jury and see how much they give this family.

Kevin Pho: Now tell us, in your ideal world, looking at patients, families, clinicians, and hospitals, what can they do to reduce incidences of these cases?

Althea Halchuck: In my ideal world, everybody has an advance directive, but really only 30 percent of people in the United States have one. In my ideal world, the advance directive is the first thing people look for in the emergency room, or a person that can speak for the patient. It’s really more important to pick a good surrogate. So that’s my ideal. Whether or not they have an advance directive, if the surrogate knows the patient well enough, they can speak for that patient.

And so choose well, and not just your husband because he’s the next closest person, but choose somebody that’s going to go to bat for you, that’s going to fight for you for what you want. And not everybody wants nothing. There are so many people that say, “Yeah, do everything. You know, spend all the money in the world to keep me alive, you know, until my last breath.” But most of the time, I think people want to die at home.

That’s another thing I’d love for people to have. They should be in hospice and palliative care a lot sooner than they are. Hospice is like six months, and the average is like 17 days. In my ideal world, people would be referred to hospice a lot sooner. They would accept the diagnosis and really kind of wrap up their life and have a more peaceful death. That’s kind of it.

Kevin Pho: And my final question: Tell us some of the take-home messages that you want to leave with the KevinMD audience.

Althea Halchuck: Everything I just said. Refer to hospice and palliative care sooner. Educate the medical staff on who’s right. It’s the patient. It’s the patient’s rights that are important, not the doctor’s ego, keeping someone alive. You know, giving CPR to a 95-year-old woman, is that really the right course, when you could break, you know, her ribs and her sternum, and she probably will have no quality of life? That’s the thing. I think people have to use more common sense when it comes to end-of-life treatment, and that would be my message: Be sensible. If this were your mother on the table, would you give her CPR? Would you want to give her chemo? And that’s happening. Most of the money spent in Medicare is in the last, like, six months of life. Why? You know, that’s just crazy.

Kevin Pho: Thank you so much again for sharing your time and insight. Thanks again for being on the show.

Althea Halchuck: All right, Kevin, thank you.