Hospice waits on a court order when no family can speak for you [PODCAST]

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A man is dying. He cannot speak, and no one in his life can say what he would have wanted. Kirsten Engel is a palliative medicine physician, and Medha Tripathi is a health writer and incoming Fulbright research scholar. This episode is based on their article “Guardianship and hospice care fail dying patients,” published on KevinMD. They explain what happens when a patient has no family and no health care proxy, and a court appoints a guardian who has never met them. A move to comfort measures then needs a court date that can take weeks, while the hospital works in hours and days. Estimates range from 5 to 25 percent of intensive care patients with no family member or proxy. You will hear what helps now: your state’s rules, hospital social workers and ethics committees trained for them, and a proxy named long before anyone needs one. If you have never named one, this conversation explains who decides in your place, and what has to change so the decision comes in time.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome Kirsten Engel and Medha Tripathi. Kirsten is a palliative medicine physician, and Medha is an incoming Fulbright research scholar. Together they co-wrote the KevinMD article “Guardianship and hospice care fail dying patients.” Everybody, welcome to the show.

Kirsten Engel: Thank you so much. We’re thrilled to be here.

Kevin Pho: All right. I’m going to ask each of you to briefly share your story, and then we’ll talk about the KevinMD article. Kirsten, why don’t we start with you?

Kirsten Engel: I’m a palliative care physician. I work at Mass General in Boston, and I’m trained in emergency medicine and in palliative medicine. I had the unique opportunity to work with Medha in the context of an elective that she can tell you about.

Kevin Pho: Very good. Medha, briefly share your story.

Medha Tripathi: Hi, my name is Medha. I met Dr. Engel when I was a graduate student at Harvard Medical School. I was doing the master’s in Media, Medicine, and Health at Harvard Medical School, and I was taking an elective in geriatrics and palliative care, as that was what my master’s thesis was related to. Dr. Engel, as one of the physicians at MGH partnering in this elective, had mentioned in her description that she was interested in writing. Through this master’s program, I also really like to write.

I came into this experience shadowing her at Mass General Hospital, and I was very interested in learning something new and sharing what I learned with other people. That’s how this op-ed came together. We came across a patient in the hospital who did not have family and could not speak for himself. He had catatonia, and he was nearing the end of life. I did not know that in cases like this, a stranger guardian gets appointed to make medical decisions. Dr. Engel explained the legal procedure and the medical system, and how these intersect for this patient. There are so many patients who might not have a legal guardian or health care proxy, and that is what we wrote about and what we’re advocating for today.

Kevin Pho: All right. Medha, why did you decide to share this particular story, in terms of why it resonated with you and why the larger public and the audience of KevinMD should know about it?

Medha Tripathi: I’m someone who wants to apply to medical school and go into health care. I feel like I have had a few clinical experiences, and I’ve tried to learn about health care, but this is something I was not aware of. In clinical bioethics, there’s a term for patients who do not have family or a health care proxy: They are referred to as unbefriended patients.

This patient we saw, whom we referred to in the article as Mr. L, was not able to speak. He had an extensive psychiatric background, and he was nearing the end of life. There were certain measures the medical team thought would help him pass comfortably. But because he had a legal guardian who was appointed, there was a delay in getting his hospice measures in a timely manner, and he passed away before he was able to receive those measures.

I was not even aware this was such a prevalent concern in the legal system. Across the literature, there are different statistics on how prevalent it is, but it ranges from 5 to 25 percent of ICU patients who do not have a person who is family or a health care proxy. They end up having to wait in the system and do not get to pass as comfortably as maybe they could. This is in place to protect patients, and for ethical reasons that we can get into. But I just didn’t know this was such a large concern, and that’s something I wanted to draw awareness to in the system.

Kevin Pho: Kirsten, tell us what you would like us to learn from the case that you and Medha brought up. What are some of the key points you want listeners to come away with after hearing this case and listening to both of you?

Kirsten Engel: Of course. First of all, these systems are set up to try to protect patients, right? They are all well-intended. Our legal system is not set up to hurt anyone. However, unintentionally, because of certain factors, our existing systems can have a negative impact on some of our patients, just as Medha described. The really hard part about this, as she also talked about, is that these are some of our most vulnerable people. These are some of the most vulnerable people we take care of.

Of course, we need protections in place so that they receive the care they need, and not care that someone else thinks they should receive. However, in certain circumstances, those protections extend so far that they make it hard to receive care at these precious moments at the end of life.

So if there are a couple of things we really want people to be aware of, the first is that this is one of those tough situations where you need a legal protection to protect somebody, but you have to make sure it isn’t then hindering something they really need. We really encourage people to be aware of what the rules are in their state, because they vary state by state. Massachusetts, where we found ourselves, is different from other states. Find out what resources you have in your hospital to support patients with guardians. We actually have specific social workers who are experts in guardianship issues, so engaging those people as soon as possible is really helpful.

And then what we’d love to bring attention to is that we really need the legal system, which has such good intentions, to line up with the timing of the medical system, which unfortunately often goes way faster than our legal system. Those are the things we were really hoping to bring attention to.

Kevin Pho: Kirsten, just to follow up on that. With these patients, and I think Medha mentioned something like 15 to 20 percent of patients, they don’t have a health care proxy, but their legal guardian cannot make medical decisions on their behalf. Clear that up for me.

Kirsten Engel: Yes, that’s really confusing. There is a portion of patients who do not have a health care proxy identified, right? One of the things we can do is make sure that, as much as possible, everybody has a health care proxy identified. That’s something we should be doing. However, there is a portion of people who do not have a health care proxy, and there isn’t someone we can readily find to be in that role. In the situation we had, the person wasn’t able to identify anyone, because he wasn’t able to engage with us.

In these circumstances, where we have patients who are without surrogates, in other words, somebody who can make a decision when they can’t, which is what a health care proxy’s role is, they then have a designated guardian from the state. That guardian technically is there to make decisions. However, guardians are court-appointed, and the court will engage in situations where big decisions are being made, like transitions to comfort measures and hospice.

So unfortunately, while the guardian is there, and we can call the guardian and talk to the guardian, the guardian doesn’t know the patient. They are a stranger to that patient; they’ve been appointed by a court. When big decisions like this around comfort and hospice enrollment are discussed, we need a court date, basically, and a court process to allow this to actually happen. That typically takes weeks, and in the hospital we’re working on a time frame of hours to days. That’s where the mismatch really happens.

Kevin Pho: Medha, with Mr. L, walk us through what happened in terms of all the issues with finding someone who could make medical decisions on his behalf. What was that like?

Medha Tripathi: I initially talked to the psychiatrist who was on his case before we started to talk about his end-of-life measures. We were not involved in the majority of his care. We saw him near the end of his life, when he had arrived in the unit to receive more comfort-focused measures. The psychiatrist I had spoken to said he had been a patient in the hospital for a long period of time, and throughout this period, he did not have family coming to see him. He did not have an assigned health care proxy.

While he was in the hospital, his condition had progressed in a way that they were not sure it made sense to continue the medical care the psychiatry team was providing. They held a clinical bioethics round table discussion on this patient, because they were not sure how to proceed with his specific case. He was not able to talk about how he was feeling, his condition was advancing, he had catatonia, and they knew there was not someone who was going to come in, who personally knew him, who might know what he would want in this situation.

When we saw him, he was at a stage where he was not able to talk. We mentioned in the article that he had his fists up in the air, and something we gleaned from that was that maybe he had a boxing history, or that boxing was a hobby of his. But other than that, we had no idea what kinds of things he would have wanted at the end of his life.

He was able to have a social worker on his case, from the ones the hospital has, and we were very fortunate to be in a hospital that has social workers for these types of cases. That’s something we also want to advocate for: that hospitals have specifically trained people for these types of complex cases, to mediate between the legal and medical sides and advocate for patients, especially when they don’t have someone who personally knows them who can do that.

What we saw, essentially, was that the legal guardian, the stranger guardian, obviously had the best intentions, and so did all of us on the medical team. Everyone wanted what was best for this patient. But the timeliness of getting his court order approved and our medical decision-making were not aligned, and unfortunately, he passed before we could do what we thought might be best for him. There are many patients in the system facing this problem, who might not have someone personally advocating for them. And the legal system and the medical system are sometimes not on the same time frame, even though both are truly trying to support patients and their well-being.

Kevin Pho: Kirsten, it was mentioned that this particular case went through a bioethics round table. You don’t have to talk about this one in particular, but in general, what are those bioethics round tables like? And maybe walk us through some of the bioethical issues that are common in these types of cases.

Kirsten Engel: This varies a little from institution to institution, but all institutions have some sort of ethics committee. They convene groups of people, typically varied providers, who are involved in discussions when there are different opinions about what may be the right or wrong way to do something for a patient. These are true ethical junctures, addressing all of those fundamental elements of ethics, namely autonomy, justice, and so forth, where there are true differences of opinion about how something should be done in the best interests of a patient and family.

So we bring together people, and fortunately, at our institution, we have some really expert people who have special training. These are generally all clinicians. They can be nurses, and they can be physicians, who have training not only in their medical field, in other words, as a nurse, a physician, or a nurse practitioner, but also additional training as ethicists. They have spent time specifically diving into these issues and really understanding ethics. These experts come together with the people who know the particular patient, in this case the psychiatrist who really knew the patient, and discuss how to make sense of this in an ethical framework. Essentially, the ethics committee can use its expertise to guide the medical team in how to proceed.

Kevin Pho: Medha, from a legislative standpoint, if you could see one thing happen legislatively, what would you like to see happen?

Medha Tripathi: I want to preface this by saying that I’m no policy expert, and I’ve considered this from a few different perspectives. Something I think would make sense to help this process concerns the people who are coming into the health care system without health care proxies. For a lot of them, we don’t have formal documentation, over the years, of who they might have considered someone they would trust to make medical decisions. They don’t have someone designated, they arrive in a condition where they’re not able to communicate, and we have no data on who they would have trusted with their medical decisions over the years.

One thing I think we could do better from a legislative perspective is, unfortunately, more paperwork, which I don’t think people would be happy to hear. But we could have this data collected over the years for each person, maybe when they submit other legal forms we’re required to do in the U.S., like tax forms. Everyone has gotten into the rhythm of, “Every year around this time, I’m going to sit down, do a bunch of paperwork, and state all of these things that are related to me.” Census data collection also occurs, and people are aware that this is something they have to do, and as monotonous as it is, they do it.

In a situation like the one we’re describing, of a patient who was not able to talk, where we didn’t know whom we could reach or whom they would have trusted, it would help to have this type of data over the years: that in this year, this person designated someone as close to them. Obviously, we know relationships change over time, and in convoluted cases like this, patient relationships can change. But I still think that having more data, more information that each person has voluntarily provided at some point in their life, could be a good starting point for a more preventive approach to this problem, where maybe we are able to have more contacts for each person.

Kevin Pho: My last question to each of you will be your take-home messages that you want to share with the KevinMD audience. Kirsten, we’re going to start with you.

Kirsten Engel: I would love to build on what Medha said. The other thing we would really hope for is to align the legal and medical systems, right? These are both systems that have great intentions and important roles in the care of vulnerable populations, but I think we need to align them. My hope would be that we could get hospital legal services to align with state legal services and expedite these cases, so that we could continue to have the protections in place but have them match the timeline we need in the medical system.

Kevin Pho: Medha, we’ll end with you. What are your take-home messages?

Medha Tripathi: I want to echo what Dr. Engel said about aligning the medical and legal systems. They both obviously have great intentions for the patients and people they serve. Building off of that, I’d add institutional change, or advocacy at hospitals, to have a social worker or an ethics committee able to consult on these types of cases. While we were in Boston, we were very fortunate to have a social worker and an ethics committee that were able to help with the decision-making in this case. That isn’t the case across the country. While it may be hard to find the staffing and people who would be experts on this, it was very helpful in our specific case, and it would serve to support patients from a clinical and a legal perspective, as well as on a personal level.

Kevin Pho: Well, thank you both for coming on and sharing your story, time, and perspective.

Kirsten Engel: Thank you so much.

Medha Tripathi: Thank you so much for having us.

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