How the kidney waiting list works; patients with impaired consciousness; helping someone with cancer: Upstate Medical University's HealthLink on Air for Sunday, March 13, 2022
Transplant surgery chief Reza Saidi, MD, explains how kidneys are allocated for transplant. Bioethicist Syd Johnson, PhD, talks about patients in a coma or other form of impaired consciousness, a topic in her new book. And psychologist Dorianne Eaves, PsyD, tells how to help someone who has been diagnosed with cancer.
Host Amber Smith: Coming up next on Upstate's "HealthLink on Air," the chief of transplant surgery goes over the allocation system for kidneys ...
Reza Saidi, MD: ... Because of incidence of kidney disease increasing in this country, every day more and more people are added to the list to receive organ transplantation. And we don't have enough organs ...
Syd Johnson, PhD: ... A bioethicist discusses impaired consciousness ... ... One thing that I discuss in my book is the way that that term "vegetative" has become really stigmatized. It suggests the kind of subhuman status for patients. They're sometimes even referred to as vegetables . And I think that term's really objectionable for that reason ...
Host Amber Smith: ... And a psychologist briefly explains how to help someone with a cancer diagnosis. All that, and a visit from The Healing Muse, coming up after the news.
This is Upstate Medical University's "HealthLink on Air," your chance to explore health, science and medicine with the experts from Central New York's only academic medical center. I'm your host, Amber Smith. On this week's show, a philosopher and ethics consultant shares her new book, explaining the social, medical and ethical obligations that apply to people with impaired consciousness. Then, psychologist Dorianne Eaves briefly explains how to help someone with a cancer diagnosis. But first, the chief of transplant surgery discusses kidney transplants and how an organ in short supply is allocated.
From Upstate Medical University in Syracuse, New York, I'm Amber Smith. This is "HealthLink on Air."
New York state has more than 7,000 people on the waiting list for kidney transplants. It's an organ in short supply. With me to explain how kidneys are allocated is the chief of transplant services at Upstate, Dr. Reza Saidi. Welcome back to "HealthLink on Air," Dr. Saidi.
Reza Saidi, MD: Thanks, Amber. Glad to be here.
Host Amber Smith: I know there are more people who need an organ transplant than there are people who are donating their organs. So what is the general system in the United States for organ allocation?
Reza Saidi, MD: Yeah, as you pointed out, the major obstacle that we have in a transplantation is to have enough organs to transplant.
Because of incidence of kidney disease increasing in this country, every day more and more people are added to the list to receive organ transplantation. As we speak, there are more than a hundred thousand patients on the list to receive a kidney transplant. And we don't have enough organs. Roughly in this country around 25,000 transplants are done, and because there are not enough organs around, there's a lot of regulation goes on with how, who are receiving these organs? As you know, there are two types of transplants for a patient who needs a kidney transplant. One is a live donor (for someone) who doesn't want to receive that organ from a deceased donor.
Obviously if a patient has a live donor -- that is a story that we can talk about later -- but to receive the deceased donor, there's a lot of regulation that goes in, as to who's going to receive this organ. Some of them have to do with the chance for the patient to survive, for example. And for example, kids usually get priority on the list to receive organ transplantation.
And some of them have to do with what's the predictive value of a successful kidney transplant. And all these factors go in. Or another thing is how long you've been waiting on the list, on dialysis, for example. All these goals factor in, and computers eventually generate a score for a patient. Based on that score, patients go up and down the list to get organ transplantation.
Recently, I think in March of last year, we changed the allocation system so that patients can get a broader sharing of all these kidneys that are available. For example, in the past, people in the state of New York were offered kidneys that were available in the state of New York or maybe Vermont, but now we go250 nautical miles from the donor hospital to increase the chance that patients would get organ transplantation. And this is something that we're actively monitoring, and so far, we've seen this system help our patients in Syracuse. And since these allocations changed in March of 2021, the number of transplants that we are able to do increased by 50%.
Host Amber Smith: Let me make sure I understand. So when we hear about this waiting list, is that for (organs from) deceased donors?
Reza Saidi, MD: Yes. That's for deceased donors.
Host Amber Smith: OK. So what you're saying is, there's a list of people who need a kidney transplant; the person whose name is at the top of the list isn't necessarily the person who's going to get the next kidney. There's some other factors that go into it.
Reza Saidi, MD: After the list is generated, that first person on the list, they offer that kidney to that person. If that patient refuses, they go to the next person.
Host Amber Smith: I see. Now is this allocation for organs handled the same way for other organs, hearts, lungs, things like that?
Reza Saidi, MD: No, they're different. For example, for heart and lung or liver, because the chance of dying waiting for organ transplant is much higher, their allocation system is a little bit different and has to do with their severity of the disease and the chance that they might die without a transplant. If they're sicker, they go higher on the list. But for kidneys, it's different because we can still have some time because we can maintain the patient on dialysis.
Each organ has a different allocation system.
Host Amber Smith: So if you're living in Syracuse, and you need a kidney transplant, did I hear you correctly that there's a 250 nautical mile radius that that kidney could come from a deceased donor?
Reza Saidi, MD: Yes.
Host Amber Smith: OK. Now, if someone needs a kidney and a pancreas transplant, are they on a different waiting list, or how is that handled?
Reza Saidi, MD: Yes, that's actually a very good point because a patient who has diabetes and kidney disease, they have very high mortality on dialysis. That's why these patients who need to combine kidney and pancreas transplants, they get priority on the list. And because of that, the wait times for those patients are less, because they do worse on dialysis.
The average wait time for the patient who needs a kidney/pancreas transplant is about two years compared to five years for the patient just for the kidney transplant.
Host Amber Smith: Now could somebody get on a waiting list in another part of the country? Could they be on more than one list at a time? Like if they live here, but they also spend time in Florida, could they get on a waiting list down in Florida?
Reza Saidi, MD: Yes. Also that's allowable, if you're listed at the other centers outside the state where you're living. A lot of states have the rule that in your state, you can just be listed in one program. But if you can establish residency in other states, you can be listed in other states, and different states have different requirements to consider you as a resident.
Host Amber Smith: I see. Well, we're going to focus on kidneys, since Upstate transplant surgeons specialize in the kidney. How does someone go about getting on the list for a potential kidney transplant? What does the evaluation consist of?
Reza Saidi, MD: As soon as somebody realizes that they have chronic kidney disease, I would encourage them to get in touch with the transplant program and be evaluated; it's an extensive evaluation that makes sure that they can tolerate a transplant surgery, and they havecompliance, for example, that they can take their medication after transplant.
And we extensively evaluate these patients from a heart standpoint, lung standpoint and from a compliance standpoint, to make sure they're a candidate for a kidney transplant.
Host Amber Smith: Is there anything that would disqualify them from being on the waiting list, such as age?
Reza Saidi, MD: No, age is not actually a contraindication. Actually recently we have transplanted an 80-year-old gentleman who was very active. Age itself is not (a disqualifier), but if they have significant comorbidity, like, for example, significant heart problems or significant lung problems, they cannot undergo surgery, or they have a history of active cancer, for example. They have to treat the cancer first and then come back for transplant. Or they have a history of substance abuse. Those are things that actually are a contraindication for transplant, or they have active psychiatric problems that they cannot comply with the regimen post-transplant. Those are the things for exclusion from organ transplant.
Host Amber Smith: Transplant recipients are considered immunocompromised, right? Pretty much for life?
Reza Saidi, MD: Yes. Unfortunately, still, despite all the progress that we've made, patients have to take these immunosuppression agents to prevent rejection for the rest of their life. The patients are immunosuppressed for the rest of their life. That's why they need to have close monitoring.
Host Amber Smith: Thinking about COVID, the vaccines for COVID and the boosters: Are they offering enough protection to organ transplant recipients?
Reza Saidi, MD: Yes, we know that after the third dose, 75% of patients will basically produce the antibodies. And even after a fourth dose, close to 85% will boost antibodies, but it's still about 10 to 15% of patients will not boost antibodies because their immune system is suppressed, and they have to be cautious, still wear a mask and be aware of social distancing and be very careful.
Host Amber Smith: In the news lately, there've been stories about people who needed organ transplants, but they refused to be vaccinated against COVID, and so they were not given the transplant. So why is it important for a recipient to be vaccinated?
Reza Saidi, MD: Yes, I think that's very important because patients who are immunosuppressed have a significant chance of dying because of COVID, compared to the general public. The general public, the chance that they have developed COVID and the chance of dying is about 1%, but for sick patients who are immunosuppressed because they're taking these immunosuppressive drugs after organ transplantation, their chance of dying is almost 10, 20 times higher.
That's why it's very important for these patients to get vaccinated before transplant, because after transplant, even if you vaccinate them, the chance that they may respond, and develop the antibodies against COVID is much less because of this anti-rejection medication that they're on.
Host Amber Smith: This is Upstate's "HealthLink on Air," with your host, Amber Smith. I'm talking with Dr. Reza Saidi, the chief of transplant services at Upstate, about how someone qualifies to join the kidney transplant waiting list.
Now can someone who is on the waiting list for a deceased donor kidney, can they move to the front of the line, so to speak, if they're able to find a compatible living donor, a friend or a relative who's willing to donate their kidney?
Reza Saidi, MD: Yes. And anybody who has a living donor can get their transplant, and they don't have to go on the waiting list. The waiting list is only for deceased donors. And as I pointed out, because there's a huge organ shortage, the wait time is higher if you go on a deceased donor list. That's why we always encourage our patients to find a living donor, that they can be transplanted on a faster pace. And usually the patients who had a living donor, after live donor kidney transplant, they have a better outcome. That's why our No. 1 choice that we recommend to the patient (is): Go out there and find somebody, a family member or friend, who can donate.
Host Amber Smith: So the survival rate for someone who receives a kidney from a living donor versus a deceased donor is much better for the person who got a living donation?
Reza Saidi, MD: Yeah, that's correct. Because we screen the living donors. You pick out the best. And also the patients who have a living donor, they don't have that much wait time on dialysis, because dialysis can make you sicker and sicker over time. The healthier folks have a living donor, and the quality of the organ that's received is always better than with a deceased donor. That's why the outcome is much better compared to the deceased donors.
Host Amber Smith: I wanted to ask you how the COVID pandemic has affected kidney transplants and transplant patients. I know you've still been able to do quite a few kidney transplants during the pandemic, but how has this impacted the practice?
Reza Saidi, MD: You know, In 2019, the pandemic started; the number of organ transplantations in 2019 and 2020 actually decreased nationwide, but in 2021 we were able to catch up, and the number of organ transplantations basically increased compared to 2020 and 2019.
As I pointed out, in our program, since the allocation change, we increased the number of all transplants by 50%, but also were able to increase the number of live donor kidney transplants by close to 80%.
Host Amber Smith: I understand nationally the number of kidney transplants set a record in 2021, with more than 24,000, and the United Network for Organ Sharing says part of that increase comes from donation from individuals who died of cardiorespiratory failure, as opposed to brain death. Can you explain the difference?
Reza Saidi, MD: Yeah, that's also a trend that we see, that some of these donors are not brain dead, but they have significant brain damage because of head trauma or stroke or anoxia (lack of oxygen). You know, we see a huge surge of donors that, unfortunately, died of opioid overdose. And some of them have (such) significant anoxic damage to their brain that they're not going to have a meaningful life, even if they survive. And based on the patient's previous wishes or the family's wishes, they withdraw care. And if they die between one or two hours after they withdraw care, we rush them to the OR and remove their organs.
And because of this opioid pandemic, I think we see a lot of the donors who are not brain dead, but they have significant brain damage. And after they withdraw care, we can, basically remove their organs and use their organs for transplantation.
Host Amber Smith: Well, what does the person need to do if they want to make sure their organs are donated when they die?
Reza Saidi, MD: One thing: They can basically sign, on their driver's license, that I want to be an organ donor. The other thing is, just talk to a family member and tell him, "If I became sick enough that I have no chance of survival, or even if I survive, my quality of life is going to be significantly impaired, I want to be an organ donor."
That's what people have to understand: Basically, communicate those wishes to their loved ones. And unfortunately, if that moment happens, their loved ones at the end have to make that determination. And if they express willingness to do that, a majority of people honor that wish and will proceed with donation.
Host Amber Smith: Well, I appreciate you making time for this interview, Dr. Saidi.
Reza Saidi, MD: Thank you.
Host Amber Smith: My guest has been Dr. Reza Saidi. He's the chief of transplant services at Upstate. I'm Amber Smith for Upstate's "HealthLink on Air."
Next on Upstate's "HealthLink on Air": The new book "The Ethics of Uncertainty."
From Upstate Medical University in Syracuse, New York, I'm Amber Smith. This is "HealthLink on Air." Today we're diving into bioethics and the social, medical and ethical obligations to people with impaired consciousness with philosopher Syd Johnson. She's an associate professor of bioethics and humanities at Upstate and an ethics consultant at Upstate University Hospital. And she's the author of a new book, "The Ethics of Uncertainty: Entangled Ethical and Epistemic Risks in Disorders of Consciousness." Welcome back to "HealthLink on Air," Dr. Johnson.
Syd Johnson, PhD: Thank you. It's good to be here.
Host Amber Smith: A lot of your research focuses on ethical issues related to brain injuries and loss of consciousness, so I'd like to start with some definitions. What is brain death?
Syd Johnson, PhD: Brain death is defined as the irreversible loss of brain function. In the U.S. the legal definition of brain death is called whole brain death, and it is the irreversible loss of all functions of the entire brain, including the brain stem. In some other countries, they use a brain-stem death standard, which is the loss of function in the brain stem resulting in an irreversible loss of consciousness and the capacity to breathe without assistance. In the U.S. someone who is diagnosed as brain dead is considered legally dead.
No other state besides New Jersey has an exception to that. In New Jersey law, if there's a religious objection to the determination of brain death, then death has to be determined using the more traditional circulatory respiratory or cardiopulmonary criteria. But New Jersey is the only state that has that kind of exception.
In New York state it's considered legal death, and the individual who is declared brain dead can potentially be an organ donor, if that's what they wanted, or medical treatment will be withdrawn from that person.
Host Amber Smith: So what is, by comparison, then, what is consciousness or the disorders of consciousness?
Syd Johnson, PhD: A disorder of consciousness is a state of impaired or diminished consciousness. And there are three main disorders of consciousness. One that most people would be familiar with is coma. In a coma, an individual is completely unresponsive. They're unaware. They don't sleep or wake up, and they don't breathe on their own typically. And this is usually a time-limited condition. And it typically lasts roughly four weeks.
The syndrome that used to be called the "persistent vegetative state" is a state of unresponsiveness in which we think there's no awareness of the self or the external world, but the patient has sleep-wake cycles, including periods of being awake with their eyes open. Recently, there have been changes in the use of terminology, and the term "persistent vegetative state," although it is still commonly used, both by the public and by doctors, is considered outdated and inaccurate. One thing that I discuss in my book is the way that that term "vegetative" has become really stigmatized. And it suggests the kind of subhuman status for patients. They're sometimes even referred to as vegetables, commonly. And I think that term's really objectionable for that reason, right? It has all of these implications of hopelessness and pointlessness, and I think we should stop using it. There have been some efforts to rename that disorder. For example, one proposed name is "unresponsive wakefulness syndrome," which is a mouthful. But it describes the symptoms and doesn't actually imply anything about consciousness.
One really interesting medical and ethical feature of this syndrome is that we've known for decades that there's a really high rate of misdiagnosis. About 40% of these patients are misdiagnosed as unconscious or unaware. In the last decade, we've seen some efforts to rename that category of patients who appear to be unaware, but whose consciousness can be detected using technologies like functional magnetic resonance imaging, or fMRI. And so currently we're calling that condition "cognitive motor dissociation," because there's a disconnect between that patient's external behaviors and what is going on inside their brain or inside their minds.
And then there's a condition called "minimally conscious state," in which a patient shows fluctuating but reproducible signs of at least minimal awareness. And this is a condition that a lot of those misdiagnosed patients might be in. What's important is that we have pretty good evidence that these patients can feel pain and also feel emotions. So we need to be really concerned about how they're treated and make sure that they're not experiencing pain or loneliness or other aversive states.
Host Amber Smith: So all three of these disorders that you described, are they thought to be temporary conditions? I mean, a person is in, say, the coma and comes out of it eventually?
Syd Johnson, PhD: So back in the 1970s, when the persistent vegetative state was first named and defined, it was thought to be a permanent or chronic condition that people did not recover from. By the early 2000s we understood that there was this other category of patients in the minimally conscious state, some of whom had recovered from the so-called vegetative state. So we started to get more and more information about these patients that some of them actually did recover consciousness to a greater or lesser degree. So there is the potential for patients to recover consciousness, but some patients, to the best of our knowledge, can remain chronically in either that unresponsive wakefulness syndrome or in the minimally conscious state.
Host Amber Smith: Why did you go with the title "Ethics of Uncertainty" for your book? What does the uncertain refer to?
Syd Johnson, PhD: I was concerned about two kinds of uncertainty that we see in disorders of consciousness. We also see those in other areas of medicine, but this was the one that I sort of used as my test case. And the two kinds of uncertainty, I think, are very much entangled and difficult to tease apart. And one is epistemic, or uncertainty related to our knowledge. And that's the medical and scientific uncertainty about disorders of consciousness and the patients. We don't know exactly what consciousness is, and we don't know how the brain actually gives rise to consciousness. That's one type of uncertainty that we have, and we also do this fairly bad job of diagnosing when someone is unconscious, that 40% rate of misdiagnosis is a pretty big problem -- especially when we start making decisions about those patients based on a misdiagnosis. And those can include decisions to withdraw life sustaining treatment, because we think someone is unconscious and will never recover consciousness.
So the other kind of uncertainty is ethical uncertainty. When we make decisions about what to do for a patient, we're making decisions with ethical implications. In many cases, those are life or death decisions. But if our reason for making a particular decision is that we have a diagnosis of unconsciousness, then we ought to be really certain that the diagnosis is right, because the treatment choices that we make are going to be very consequential. From the early days of disorders of consciousness, there was a sense of certainty, both about the diagnosis and the hopelessness of these patients, and also about the ethical question of what we should do. We saw really early on, legal precedent set about whether it was legally acceptable to withdraw life-sustaining treatment from these patients. The Karen Ann Quinlan case in the United States was in the early 1970s. And just a couple of years after, the persistent vegetative state was named and defined in the medical literature. So there's this persistent belief that there's just no good reason to keep someone alive in a state of impaired consciousness. And these attitudes persist today.
Even though today, we know a lot more about these disorders and we know that we still don't know a lot about these disorders. And we don't know a lot about these patients. So there's a saying about disorders of consciousness that no two patients are alike. The complexity of the brain, the uniqueness of different injuries to the brain and to different areas of the brain, make every patient, in a sense, unique. If we can't be sure we're right about the diagnosis and the prognosis, then we can't be sure that we're right about the ethical prescription either. So, one thing I worry about is this sense that there is some universal right answer about what we should do for, or about, these patients. I don't think there is.
Host Amber Smith: Well, your book is getting great reviews. I saw on Amazon, someone described it as "a passionate and conceptually deep effort to open up new ways of thinking about and taking care of people with dramatic brain injuries." In general, what are we doing now in treating people with brain injuries that you believe we could do better?
Syd Johnson, PhD: The possibility that someone with a serious brain injury will not recover, or will not recover in the way that they would want -- they might be disabled, they might have impaired consciousness -- that drives a lot of decisions that are made in the immediate aftermath of injury. So the majority of deaths after a serious brain injury occur after life-sustaining treatment is withdrawn. And that often happens within the first 72 hours after an injury. There's a lot we don't know about that patient and their potential for recovery in the first 72 hours. But what's driving those decisions to withdraw treatment is fear. It's a fear that the patient will survive, but not in a condition that they would have wanted or would find acceptable. And we can only prevent that from happening by deciding that they won't survive. The problem is this results in a self-fulfilling prophecy. It looks like a lot of people die after serious brain injuries because lots of people do die, but many of those people die when they die because treatment is withdrawn.
Some of those patients would die no matter how hard we tried to save them, but some of them would have survived if we had continued to treat them. So, one thing that happens is that our data about these patients is skewed. So it looks like most people die after a serious brain injury, even though many of those deaths occur because it was decided that they would die. That's the self-fulfilling prophecy. So one thing we're not doing is giving people a chance to improve and recover. We're giving up too soon, I think, in many of those cases and acting too soon in order to avoid a bad outcome that might or might not happen much later. In fact, despite improvements in neuro intensive care and in our ability to save lives, the percentage of patients dying after treatment is withdrawn has actually been increasing.
Host Amber Smith: Upstate's "HealthLink on Air" will be back with philosopher Dr. Syd Johnson after this short break.
Welcome back to Upstate's "HealthLink on Air." I'm your host, Amber Smith, and my guest is Syd Johnson. She's a philosopher from Upstate's Center for Bioethics and Humanities. She's an ethics consultant at Upstate University Hospital, and she's the author of a new book called "The Ethics of Uncertainty."
Can you give us a synopsis of the recent neuroscientific discoveries that have taught us more about the disorders of consciousness?
Syd Johnson, PhD: Sure. One of those that I mentioned is the use of neuroimaging that looks at whether patients' brains might be capable of responding to stimuli or to commands. So fMRI has been used for this. Some studies have shown that patients are able to respond to verbal commands by actually modulating or controlling their brain activity. So they might be asked to perform an act of imagination or a mental task, like "imagine you're playing a game of tennis." And the fMRI can show us that the areas of the brain that would normally be activated by that kind of mental task are also activated in these patients, even though the patient's outward behavior shows no indication that they are capable of responding to our questions.
So this tells us a few things, right? It tells us for one that the patient heard the command and understood the command they were given and also was able to perform the mental task. And all of those things require, so far as we know, that the patient be conscious and aware. But there are also lots of reasons why someone might not pass that kind of test, and they're the same reasons that they might fail a bedside behavioral exam as well. Their brain injury might have damaged the parts of their brain needed to understand language, for example, and then they wouldn't be able to perform the task. So that's one example of a sort of revolution that has taken place in the last couple of decades, really in the 2000s, in our ability to detect consciousness in a subset of patients for whom we cannot see it from their outward behavior.
Host Amber Smith: Are researchers looking for ways to pull patients out of unresponsiveness, or the old "persistent vegetative state"? Is there research being done for how to sort of break the spell?
Syd Johnson, PhD: Yeah, there has been a renewed interest in these patients within this century, as we've started to get these hints that there might be more going on with these patients than we had previously thought. And so one thing that we have pretty good evidence for is that patients have better recoveries when they have access to high-quality and dedicated neuro rehabilitation. Unfortunately, rehabilitation of that type is not widely available. It's very specialized. It can be very expensive, and it's simply not accessible to a lot of people. There have been some experiments with some drugs, with technologies like deep brain stimulation, to see if they can help. And they do seem to be helpful for a subset of patients. The drug zolpidem, which is the sleeping pill Ambien, has a kind of paradoxical effect. In about 10% of patients with disorders of consciousness, instead of putting them to sleep, it wakes them up, and it makes them more alert. The effect is temporary. It lasts as long as the drug is in their system, but it has been shown to be fairly dramatic in a number of these patients. So, because we have had this renewed interest in these patients and helping them, there are now ongoing efforts to try to figure out ways of detecting earlier on which patients might respond best to treatment, and also figuring out ways of helping them.
Host Amber Smith: Are there criteria that doctors use to determine whether someone's going to survive or whether it's time to pull the plug, so to speak?
Syd Johnson, PhD: The role of doctors, in my view, is to provide surrogates with the information that they need to make those decisions for the patients. Most people don't know that there's a 40% misdiagnosis rate in disorders of consciousness or that because life-sustaining treatment is withdrawn so frequently following serious brain injuries that we don't actually have accurate data on how many patients could survive and recover if we continue to treat them. There's a lot of uncertainty about these patients. And of course, uncertainty is something that can be very difficult to acknowledge and to explain. I think, though, that there is both a moral and an epistemic obligation on the part of doctors and other medical staff to acknowledge that uncertainty, to understand the reasons for that uncertainty and to inform surrogates of that uncertainty so that they can make the best decisions they can, given that uncertainty and also make decisions that align with the values and preferences of the patient. But I think we too often fail to really communicate and acknowledge that level of uncertainty that exists with this group of patients, and that's a real disservice to their surrogates and to the patients, as well.
Host Amber Smith: I'm curious about how an ethicist helps a loved one or a surrogate decide what to do, whether it's time to pull the plug or provide other types of care to someone. What kinds of questions can we be asking about particular situations that will help us do the right thing?
Syd Johnson, PhD: For surrogates or proxies, these are never going to be easy questions for them to deal with. We're often dealing with these problems in a situation of crisis, a situation that is very emotionally difficult for loved ones who are dealing with a serious injury to someone that they care about. What a surrogate should be doing, what their moral and their legal obligation is to do, is to make the decision that the patient would want them to make for them. If the patient could decide themselves what they wanted to be done, that is what we want the surrogate to do for that patient in terms of their decisions about what kind of treatment the patient would get, and whether it's time to stop treatment for that patient.
If that surrogate knows the patient well enough and understands their values, understands their beliefs, their religious beliefs, if they had any, and has talked to that person about their preferences and wishes, then they can make decisions that are probably pretty close to what the patient would decide themselves. And of course there's no single right answer, and there's no perfection possible in these kinds of non-ideal circumstances. People have to do the best that they can.
Host Amber Smith: In general though, what are our social and medical and ethical obligations to people with impaired consciousness?
Syd Johnson, PhD: Well, people with impaired consciousness are still people, and we have the same obligations to them that we have to anyone else who is facing a serious injury or a serious illness, to know as much as we can, to get the best and most accurate information that we can about their condition, about their prognosis. Doctors, I think, can play a really big role here in dispelling myths and misconceptions about these patients. And I think doctors also need to dispel the power of those myths and misconceptions in themselves and the way that those, their own beliefs about these patients might influence what they tell their surrogates and what they personally believe about what should happen. We have to acknowledge again, that there is a great deal we don't know about what's going to happen in someone's future, but we still need, I think, to treat them as persons who have rights and who are entitled to medical treatment and who are entitled to respect for their own values and their own autonomy and their own preferences.
Host Amber Smith: Do you think it's different if the person is medically frail or elderly?
Syd Johnson, PhD: When someone is elderly or has confronted a chronic illness, for example, in their life, that can certainly affect their ability to recover and their ability to survive from a serious injury. It may also affect their values. By which I mean, if someone is already near the end of their life or has the understanding that, their life is going to end and has accepted that, they may not want a lot of medical interventions, and they may not want to be in an ICU at the end of their life. They might've told their friends and their families and their loved ones, "if something happens to me, I'm done, and that's OK." But someone else, for their very own reasons, might've said, "I want you to do everything possible to keep me alive as long as possible."
I consulted on a case a while back involving an elderly man who had a serious stroke. He was not expected to recover. He was minimally responsive. But he had told the doctors when he came to the hospital, and he also told his son who was his proxy, that he wanted to be kept alive as long as possible. And that's what his son decided to do, was to continue treatment, which is entirely appropriate. The surrogate should be making decisions that align with the patient's desires and beliefs.
Host Amber Smith: What about when the person with impaired consciousness is a child? I imagine that's got to be more challenging.
Syd Johnson, PhD: Parents who are facing a serious injury or illness in a child are always confronted with extremely emotionally fraught and difficult decisions where they have a genuine and heartfelt interest in that child continuing to live. And because children, unlike adults, have not always had a chance to formulate their own values, or to make their own choices or to think about mortality and think about how they want their lives to go, parents don't have that to rely on, in thinking about what would be best for this child. So they often have to make decisions that consider what are in the best interests of that child, without knowing what the future might hold for that child. So again, there's no single right answer that applies across the board to every patient. And we tend to trust parents to make these kinds of important decisions for their children and about their children's lives. And I think that's the appropriate way to approach it -- even if we think that some of those decisions might be inappropriate at times, or perhaps we think people are having trouble letting go when we think they should be letting go. I think we need to trust family members to do what is best, all things considered, for that patient.
Host Amber Smith: Do you see that cases are approached differently if the person has a disability? Are those cases treated differently, do you think?
Syd Johnson, PhD: I think that there tends to be some bias about what quality of life is like for disabled persons, or how valuable the life of the disabled person might be. Now, of course, disabled persons are still persons, and they have the same rights, including the right to medical treatment and the right to have their autonomy respected and their values and interests protected that every other person and every other patient has. Persons with disorders of consciousness are impaired, and they can have a number of cognitive and physical disabilities as well as a result of their injuries. But what guides our decisions about them should be the same as it is for anyone else. If someone comes to us in a coma or in an unresponsive wakefulness syndrome and has a prior disability -- perhaps they were a wheelchair user, perhaps they had a cognitive disability, I mean, there's a wide range of possibilities here -- we still need to treat that patient as we would any other patient, taking into consideration what was important to them.
Host Amber Smith: For someone who becomes impaired without having chosen a surrogate, or maybe they don't have children or parents to speak for them, how do bioethicists help determine what that person's wishes or desires would have been?
Syd Johnson, PhD: So as a bioethicist, I don't usually know the patient, and I don't know what their values are or what they cared about. Situations in which we have a patient who is unrepresented, has no family or no close confidants that we know of in order to make their decisions, those are extremely difficult. And the law in New York state, at least, certainly does have some provisions built into it, to protect those patients and protect their interests, but also to allow doctors -- and this is a situation that we often call two-physician consent, where two doctors are in agreement about the patient's diagnosis and prognosis about how long they might have to live, about whether or not they are permanently unconscious. Those are the kinds of considerations we can use in making decisions about what happens to those patients. But those are extremely difficult circumstances for decision-making. In some cases, those might also be patients who are entitled to have a court appointed guardian to make decisions on their behalf.
Host Amber Smith: I wonder, do you start with an assumption that everyone values life and would want to live, or do you try to empathize and learn about the person and their background and who they are and what they might have wanted?
Syd Johnson, PhD: That's extremely difficult to do when you don't know a person. Now, of course, young people get into accidents and suffer injuries, and they tend not to have advanced planning, formal advanced planning documents, for example, like an older person might. So their surrogates, whoever they are, are going to have to try to figure out what was important to that patient and what they would want that patient to do for them. I don't know the patient, so I'm not in a position to say what they wanted or valued. And that's a very individual thing. So, generally speaking, we think that life has value for most people, but life has value for us, depending on what's involved in living that life, right? For some of us, a life of unconsciousness would be not a good life. For some of us, though, just the value of being alive might override any other considerations and be worth continuing to live. So it's a very individual matter. And , there's certainly, as I have said, no single right answer that we can apply to all people.
Host Amber Smith: Any last words of advice for someone who's living in an uncertain situation, perhaps with a loved one who has got impaired consciousness?
Syd Johnson, PhD: I think it's important that surrogates and proxies understand that it's entirely appropriate to take an all-things-considered approach to decision-making and to keep in the forefront what's good for this patient and what this patient would care about. One of the things that you sometimes encounter in these contexts is that the family decided to continue treatment for this patient, to fight for this patient, to give them every opportunity to recover and found after a number of years, perhaps, that the patient's recovery was fairly limited. Perhaps they were left in a chronic minimally conscious state, where they weren't able to do the things that they cared about in life, weren't able to go to football games or play with their children or their grandchildren, or go to their jobs, if their jobs had a lot of meaning for them. And those caregivers and those family members will at some point confront this decision about whether or not they think this is the life that that person would have wanted to live. And again, a very individual choice. The circumstances in which families and surrogates find themselves can vary a lot. Their health insurance certainly is going to play a role in what they can do for this patient, the social support that they might have available to them. They may belong to a tight-knit community that offers them lots of support, or they may not. And our society, generally speaking, does not support these patients very well. And this is true of brain-injured patients in general, regardless of the level at which they end up. So these are extremely difficult decisions for caregivers and for family members to make and they have to make the best decisions that they can under the circumstances that they find themselves in. They will never be perfect decisions, and they will never be easy.
Host Amber Smith: I appreciate you making time for this interview, Dr. Johnson.
Syd Johnson, PhD: Thanks a lot.
Host Amber Smith: My guest has been Dr. Syd Johnson. She's an associate professor of bioethics and humanities at Upstate, and the author of a new book called "The Ethics of Uncertainty." I'm Amber Smith for Upstate's "HealthLink on Air."
Here's some expert advice from psychologist Dorianne Eaves from the Upstate Cancer Center.
How can a person help support someone who has been diagnosed with cancer?
Dorianne Eaves, PsyD: I think it's meeting them where they're at. And oftentimes people try to understand or cheer them up, and a lot of times they might not want that. Just seeing what their needs are, meeting them where they're at and also knowing that -- I tell couples all the time -- that it impacts you very differently. You all are going through the same thing, but it's like you're reading the same book, but you're on different pages, and each of you have not read the page that the other one is on. So I think this is where I can come in and support them both, and finding ways, practical ways, of helping and supporting a patient.
And also knowing that a lot of times they still want to maintain their autonomy and their role within the relationship and their independence. So finding ways that they can still have that while also helping and supporting them along the way, too. And it might be, like said earlier, attending appointments with them, driving them to appointments and being that person that's taking notes and asking you the questions that the patient has so that the patient can be in the moment, too.
But it's a very difficult thing to come alongside someone that is going through cancer, cancer treatment, and a diagnosis. So just meeting them where they're at and supporting their needs. And also as a family member and caregiver, knowing that your needs are important to support as well.
Host Amber Smith: You've been listening to psychologist Dorianne Eaves from the Upstate Cancer Center.
And now, Deirdre Neilen, editor of Upstate's literary and visual arts journal, The Healing Muse, with this week's selection.
Deirdre Neilen, PhD: Poet Gloria Heffernan sent us a poem that reminds us of how COVID upended some of our abilities to care for our families. She shows us what is lost when we do not allow people to be accompanied to the hospital in her searing poem "Out-Patient Surgery":
I have made the bed
and washed the breakfast dishes.
Because you have been fasting since midnight.
Standard pre-surgical procedures.
In and out by noon, they tell us.
Nothing to worry about.
But I do worry,
because I am not there where I should be,
sitting in a hard plastic chair
drinking coffee that is cooled to lukewarm
while I wait for someone in scrubs
to come out and tell me
you are fine.
Instead of holding your hand
as they wheel you into the O.R.,
I squeeze it once and let go
as a masked nurse escorts you
from the car to the lobby
before I drive off to wait
for the phone to ring.
Necessary precautions, they tell us.
This is how we flatten the curve.
They call it out-patient surgery.
But I am the one who is out,
and anything but patient
as I wait here at home
for news of you.
Host Amber Smith: This has been Upstate's "HealthLink on Air," brought to you each week by Upstate Medical University in Syracuse, New York. Next week on "HealthLink on Air," the Upstate New York Poison Center marks 65 years in operation. If you missed any of today's show, or for more information on a variety of health, science and medical topics, visit our website at healthlinkonair.org. Upstate's "HealthLink on Air" is produced by Jim Howe with sound engineering by Stephen Shaw. This is your host, Amber Smith, thanking you for listening.