The Safety Net for Informed Medical Consent

In situations where an individual is unable to provide informed consent and has no family or legal surrogate available, major medical decisions can stall in the court system, resulting in delayed care. This episode of the "Could This Happen in Your Program?" podcast explores the Surrogate Decision-Making Committee (SDMC), a critical, non-court alternative authorized by New York State to provide timely and personalized consent for non-emergency major medical treatment and end-of-life care.  

Join us as we discuss who qualifies for the program, the person-centered process guiding the panels' decisions, and the significant benefits it offers to some of our most vulnerable New Yorkers.  

We’ll also share how you, as a licensed professional, former patient, or advocate, can lend your voice to this powerful cause and become an SDMC Volunteer Panel Member.  

Featured Guests:

• Victoria Clingan, Director, SDMC  
• Cindy Pross, SDMC Nurse Case Processor, Registered Nurse 

Transcript

Erin Hogan (00:11):

Hello and welcome to the “Could This Happen In Your Program?” podcast, where we find collaborative solutions for protecting New York's most vulnerable populations. In situations where an individual is unable to provide informed consent and has no family or legal surrogate available, major medical decisions can stall in the court system and delay care.

In this episode of the “Could This Happen In Your Program?” podcast, we explore the surrogate decision-making committee, a critical non-court alternative authorized by New York State to provide timely and personalized consent for non-emergency, major medical treatment and end-of-life care.

Join us as we discuss who qualifies for the program, the person-centered process guiding the panel's decisions, and the significant benefits it offers to New Yorkers.

Finally, we'll share how you, as a licensed professional, former patient, or advocate, can lend your voice to this powerful cause and become an SDMC volunteer. Okay, well, welcome to our guest today. Today, we have Vicki Clingan, Director of our SDMC unit. We also have Cindy Pross, SDMC Nurse Case Processor. Welcome to you both.

Vicki Clingan (01:19):

Thank you. Thanks for having us.

Erin Hogan (01:21):

Yeah. So I think to start, I'll just ask that you give a little background on your professional history and what brought you to the Justice Center.

Cindy Pross (01:31):

Sure. I'm Cindy Pross. I'm a nurse. I have worked with the IDD field for 30 years. I've worked and collaborated with SDMC in the past and was thankful to come aboard as an employee about seven years ago to work as a nurse case processor and educator.

Vicki Clingan (01:56):

And I'm Vicki Clingan. I'm the Director of the SDMC unit here at the Justice Center, and I started my career back after college, I started in a group home working directly with people and assisting them, and I was a clinical assistant for a little while too. So I also know some of the things that people are going through when they come to SDMC. And then I worked in advocacy with the Brain Injury Association for 12 years before coming here as an Empire State Fellow, and I've been director of the unit since about 2020.

Erin Hogan (02:28):

Great. So today's conversation explores the Surrogate Decision-Making Committee (SDMC). And for those of our viewers who are watching or listening, can you give us just a brief background on what SDMC is and then also help us kind of understand what that gap in care that, or service, I suppose, that SDMC fills?

Vicki Clingan (02:52):

Yeah, I'd love to. So, the Surrogate Decision-Making Committee was established in 1988. So, it's been around for 37 years as a faster and more accessible way of getting medical decisions for people who need them, who lack capacity, and don't have a surrogate to do that for them.

We typically help people in the OPWDD system who are living, they could be living independently, whatever level of independence they have, we can assist if they cannot make that medical decision. So, it fills a void where the court system takes a long time. It could take weeks to get a decision. And many of our medical decisions, as we all know, are something that has to happen fairly quickly. They're not necessarily emergencies, but we don't want to wait to find out if we can get a biopsy or make one of these decisions. So, it was set up to fill that void and make sure that people could get a timely medical decision without having to go through the court system, without having to hire lawyers, without having to go through a lot of steps. And I think that we do a really good job in making that happen for people.

Cindy Pross (03:58):

I think it's also personal and comfortable. It can be done right in the person's home, by video, with the staff that they know, and not a big court procedure.

Erin Hogan (04:11):

Yeah, I would assume those court procedures feel like a court procedure. They don't feel like this personalized process that you're able to provide. So, walk us through that process, what types of decisions, you said major medical, anything that would require informed consent, is that correct?

Vicki Clingan (04:28):

Yes, legally required informed consent. So I think overall in general, when you go to the doctor, they want your informed consent, and that means they're telling you about what the procedure is and then asking you to give consent for it.

For many of the people served by OPWDD and some people served by the Office of Mental Health, they don't have the capacity to make certain decisions. They might be able to make some decisions when it comes to getting stitches or something like that, but they may be a higher level, an involved procedure that might have a lot of risk would be more complicated. So we are able to make the decision just for that one specific item, not necessarily, it's not guardianship, we're not taking over all decision making. We're literally making that decision that's there today. And we do that for major medical procedures majors in the title. So it's things that are more involved, something with a lot of risks, something that involves surgery or general anesthesia, something that would involve someone to actually cut into your body would be a major medical procedure. And we also make some end of life decisions for people who meet certain qualifications. And the same principles apply. It's for somebody who can't make their own medical decision and has no surrogate who can do so on their behalf.

Erin Hogan (05:45):

And so how would that differ from, I know certain hospital systems have in-house ethics coordination teams, and how does SDMC differ or do you work in coordination with those groups?

Vicki Clingan (05:58):

Well, for end-of-life, the way the law is written, people have to get special decision-making. They can't use the ethics system for that.

And I think with major medical, it's the same thing, we are an option. If someone meets the qualifications for SDMC, they come to us and we make that decision fairly quickly. And the intent behind those laws is that there are people involved who know that population or know the specific needs of it.

Erin Hogan (06:24):

Sure. So, we talked a little bit about what type of procedures, we said surgical procedures that would qualify as a major medical decision. Who, though, would qualify for SDMC? Is it just anyone, or are there certain

Vicki Clingan (06:42):

No, it's not just anyone. So for major medical, it's someone who's lived in or does currently live in a residence, funded, authorized, or overseen by the Office for People with Developmental Disabilities or the Office of Mental Health. For end-of-life, there are very specific qualifications, and that one is based on your actual diagnosis. So that is a diagnosis of intellectual disability or developmental disability with an intellectual component that affects capacity. And then also for end of life, there has to be a qualifying diagnosis. So we can't preemptively make a decision with end of life. And when I'm talking about end of life, I mean withholding or withdrawing life-sustaining treatment. So it could be a do-not-resuscitate order for someone. Or, it could be that they want to go into hospice because nearing their end of their life and we want to prevent suffering. So we want to make sure that they're not going through a lot of medical procedures that will not actually prolong their life, but will cause suffering.

Those are the qualifications, and it comes before a panel that actually makes the decision. So there are very specific rules around who can qualify, especially for end-of-life, but a little bit in major medical as well. And if people are not sure, we ask that they call us because they can speak with me, they can speak with people like Cindy, who can explain the qualifications and who can work through the question.

Erin Hogan (08:06):

And if you've watched these videos before, we will link the number up, we'll link the contact information so everyone will have that. How would someone apply for the SDMC process?

Cindy Pross (08:19):

Okay, alright. Well, if you're uncertain whether you qualify, call us.

If you're uncertain that the medical decision is major or would qualify for using our services, again, call us.

But beyond that, you can go to the justice center.ny.gov sdmc slash sdmc or just Google SDMC forms and you're going to get to us, you'll be able to see there the forms that need to be completed, examples of forms that are already completed, and a step-by-step video on how to do it. It will have our phone number, so you'll be able to reach us and call us. And that's really the first step, deciding that you're going to have the case, fill out the forms, fill out them completely. If you miss a section, it's just going to delay care. So make sure you're going through all of that completely. And I guess that rounds out how you get in touch with us and you can fax it to us or email it to us.

Vicki Clingan (09:29):

Please do one of those and don't mail it, prefer it's a little faster.

Erin Hogan (09:33):

It's not the most timely. And then who sits on the panel? So I can assume we have a nurse here. I'm assuming attorneys probably play a role in this process.

Vicki Clingan (09:44):

So our panels, so when you come to SDMC at the hearing, it's actually before a panel of volunteers.

There's four volunteers who are in specific roles. There's a New York state attorney, someone in the healthcare professions, a licensed healthcare provider. That could mean a social worker, it could mean a nurse, it could even be a doctor. And then there's these advocacy and family member roles, which are, it actually could be a person who is served by SDMC in the past who then comes in as a volunteer later if they've now have the ability to do so, or family member of someone with disabilities who just feels passionately about this. And each of them bring their own perspective. So you get that legal perspective of knowing what the laws might be that a lawyer would bring a little insight into what kind of medical questions we should ask from someone who's in that field. And I mean, they all really are advocates. So they all sort of have that perspective of what it's like to care for someone who needs assistance and how you might show your compassion in this way.

Erin Hogan (10:48):

In that panel, in the decision-making process, there are three critical determinations, and they are capacity, surrogacy, and best interest. Can you walk us through, you receive a new case, what does that discussion or decision-making process look like, keeping those three pillars in mind?

Vicki Clingan (11:09):

Absolutely. Well, first of all, when you send in, it's called the declaration. When you send in your four forms, one of our SDMC nurses looks through them and make sure they're complete, that all the information is there and that you are prepared. So they're going to answer questions, they're going to give you some tips for the hearing, and then it moves to one of our SDMC contractors. We have contract agencies across the state who actually hold the hearings, which are virtual. So the contractor will find a time that works for you and also for everyone else involved in the hearing. And they will schedule that and you'll get a link to join via WebEx. And then when you join, you'll see these four panel members there who will ultimately ask you questions. You are sworn in. If you're a part of the people who are telling us why the person needs this, we do ask that you be sworn in.

But other than that, it's very much informal and a discussion, the panel members will ask questions and they will start off with the question of capacity. So even though you've submitted a certification from a doctor that says, this person lacks capacity, the panel is going to ask questions of the person who actually needs the medical care to get an idea of whether they agree with that, of whether the information presented to them meets the legal standard of clear and convincing evidence. So that is really, this is an important decision. We're saying that this person doesn't have the capacity to make their own decisions and we're going to do it for them. We want to make sure that we're really clear that they don't have that ability. So they ask questions about capacity. They will ask the person directly, and then they'll also ask the providers who are there with them, what's a normal day? What kind of decisions does this person make? And they can deliberate right then if they don't think that the person lacks capacity and that this doesn't meet that legal standard, they can say, we think they have capacity and they can make this decision. It ends.

Erin Hogan (12:58):

How often does that happen?

Vicki Clingan (13:00):

It's not super often, but it does happen.

Erin Hogan (13:04): 

That's good to know that there are checks and balances, though, that it's not just this automatic, you go into this process and your decisions are being made by others.

Vicki Clingan (13:11): 

I have an example, actually, where we had a person who needed dental care, and the dentist said they needed several teeth removed. I think it was like four, and they were at the hearing, and the idea was they didn't understand that that could cause an infection. It might not be physically hurting you right now. Some of them were hurting him, and he said, I want to get the ones that hurt out, but I understand if the other ones get worse, I might need to get them out too. The panel saw that as an understanding, this person does understand

Erin Hogan (13:42):

Weighing the, weighing the risks, what it

Vicki Clingan (13:43):

Yeah, they've weighed the risks and benefits here. They understand what a benefit of not having that tooth would be, but they don't want to have this done. They were agreeing to the ones that were infected and needed to be removed. So they really showed an understanding, and that's why it's so specific to the procedure, because it could be, you might understand how that would work, what it would mean to have a tooth removed, but not understand that when you have a colonoscopy, there's risks of perforations and things like that. So it's a range. Your capacity is a range. So they do sometimes find that that person has capacity. If they find that they don't have capacity, only then do they move on to the question of, “is there a surrogate?” Then they're really just trying to make sure that SDMC is the appropriate venue for this, because if there is, say, an actively involved parent who wants to make decisions, SDMC can't make this decision.

That's who the surrogate is. So we do address that at the hearing as well with that same standard of clear and convincing evidence. So we really want to be clear on the record that this person does not have another person making this decision, and then they move on to best interest where they actually talk about the procedure, what is this procedure, what are any other alternatives? But that element has a lower level for the legal standard that is a fair preponderance of the evidence. So that is literally weighing the options. So if there's alternatives or this might cause these issues, they're really weighing does this work for this person and their specific needs?

Cindy Pross (15:17):

And in best interest, what they're really looking at is assessing the risk, the benefits and the alternatives and the risk of not doing the procedure, which sometimes can sway the panel, but they're also including exploring what the person's values and beliefs are as they're looking at this.

One example of that would be there was a panel who had the decision that the person was going to have a mole removed, and that was the recommendation from the doctor. That was a procedure on the table. The staff were not really in favor of it, why do you need to, they said, it's likely benign, there's no reason you need to do it. But she said, I want it off and I know what the risks are. I want it off. Do you know all the risks and benefits? Maybe not even having capacity, but did know enough to give an opinion that they wanted it and that they wanted to have it done.

(16:16):

And so the panel voted with considering that the person's beliefs and their opinion was highly valued in that. And I think that's one of the benefits of having the panel. We're going to look as an outside group at what is presented, not just weighing the medical care, but weighing the risks and benefits specific to that person. If you think about dialysis and what that can mean to a person having to sit still for many hours during the week with tubes coming in and out of you and people around you, if you are averse to having people touch you in medical care and you don't like to sit still all day, maybe that's not a good medical decision for you to just do that because the doctor said to do that. It's really got away who is this person in front of us and what's the best for them as an individual? And I think our panels do just a great job with that, being able to see the medical but also see the human there.

Erin Hogan (17:22):

And so they're weighing the risks and benefits. Are they also prescribing an alternative approach, or is it more we say this is not the right approach, come back to us with new one.

Vicki Clingan (17:36):

Yeah, they are. So they're only able to look at what's in front of them. So if you come with a colonoscopy, they can't say, you know what, you should try to do the testing, do a Cologuard test or do a virtual, No, they're not able to give you an option.

I mean, there is little tweaks that they might say, we don't want this person under general anesthesia, something like that. But they don't, no, they can't give alternatives. It's not to choose a path. The treatment team should already have talked about this and kind of discuss with the physician what the best patient is. Got it. Physicians don't usually come to SDMC proceedings, so it's usually the nurse, unless it's the end of play, yes, if it's the end of play or it's something serious, seriously complicated where we try. But unfortunately, doctors are usually really busy and they don't have time to join for many.

Cindy Pross (18:25):

It would cause delay and we want to be efficient. And oftentimes for colonoscopy, the nurse is perfectly capable from the house to explain it when the person has an acute issue, an urgent surgery, a rapidly changing condition, or it is one of those things where you're deciding a DNR or the person is in the hospital with sepsis on a ventilator. Those are things that we really want the acute care physicians' opinions presented of, and we have great success with the hospitals across the state, having their doctors be there on our hearings and do a nice job for us.

Vicki Clingan (19:01):

Absolutely. They're usually really good. I think it's when there's someone looking for an outpatient surgery, the dermatology thing that Cindy was talking about, it's harder to get them to join or to find time. And I think we all know that, right? Because we know it's hard to get an appointment, so it's hard to get that done in a quick timeline. So we do want the people who are at the hearing to be ready to answer those questions. But definitely you can bring anyone, if you have an expert and the doctor's willing to come, or there's some other expert, we would encourage them to include that person in the hearing.

Erin Hogan (19:33):

Now, I'm assuming your main referral sources from providers, do you feel like there is a wide knowledge of SDMC and its services? Do you feel there is more education to be done? And if so, what tips would you have for providers who are seeking SDMC services for those in their care?

Cindy Pross (19:55):

The tips? Well, let's see. Let's start with whether folks know about us. And I would say that most of the larger hospitals know about us and many of them have developed to specialize folks within their palliative care or their social work or discharge planning. Somebody in that case management type department usually is great with us. Providers with OPWDD are usually pretty good with us. The individual staff or nurse who calls and gets in contact with us, oftentimes, because you know what staffing is like and the turnover, it is a new person, but systemically within their systems, they are aware this is where you have to go, and it's on the chart. We are the right place for them to go to. So they call us, and I orient them on the phone to what they can expect from the whole process. And that's really the tips is to get the orientation. If we have a training, go to it. A lot of times we do that through the Justice Center, and you can see it on the Justice Center website, some old trainings if you're doing it. But oftentimes when you're in the middle of a case and you need a decision, it's not the time to go back for training.

So you call us and I go through everything on the phone with you. I would say tips to being successful will be that you're doing the forms, you're filling them out completely, you're sending the right information. I don't need the whole medical chart. I need what is appropriate for the situation that you're talking about there, and follow our guidelines that we give you. And as an organization, if you can have staff, nurses, managers at houses when they're first being oriented to the job, go to an SDMC hearing as an audit or as a visitor, rather than if you show up your first time having to testify, it can be a little overwhelming. You don't know what is going to be asked of you, and you don't know what it's going to feel like in that seat. So those are kind of the main things.

Vicki Clingan (22:03):

Yeah, I think having support, if there's a supervisor who's done it before and can support you, that's really helpful. Having the paperwork with you at the hearing, so you're in your own space, and we ask you to be in a private space so that there's private medical information being shared, and so you can focus, you can reference materials. This is an open-book exam. You bring the record, and also you bring a copy of what you submitted. A copy will be sent out with page numbers. That's always really helpful because you can refer to it if you're not, they ask you a question, and you get a little nervous and think, wait, I think that's in the packet, but why do I have to say it again? You can say, “oh, over here on page 13, that's where the doctor wrote this information and this is what they told me,” which I think should make people feel a little more comfortable.

Erin Hogan (22:51):

I want to switch briefly to the volunteer aspect of SDMC. You rely mainly on volunteers. What would you say is the biggest reward for the volunteers that serve on SDMC, and what kind of skills are you looking for when seeking volunteers?

Vicki Clingan (23:09):

I think the biggest reward is just helping people, you know, went to an appointment or hearing, and you heard that person needs help, and you helped them get an answer quickly so they can get what they need or have made that decision and move on to another process. I think that's the biggest one. You get to talk to that person directly. You get to give them the ability to join in that conversation and be a part of their healthcare decision-making, which I think is just really, that's my favorite thing about the program, is that that person is at the hearing and we're including them as much as they can be included. I think the expertise that people bring to the hearing is really important, but also just that caring, the fact that you're a volunteer in this program means that you care about people who don't have these decisions, decision makers. And some of the people have family members who are getting services and who know what it's like to make those decisions and feel that everyone should have this sort of support. So that's kind of their angle when they come into it, I think. But I think we all care. We all want to get this done. We all understand that this program is really important to timely decision-making, and that's really the bottom line. Everybody just wants to help somebody get the decision they need.

Erin Hogan (24:29):

I think for someone who works. So, really, anybody could be a volunteer. I just want to clarify.

Vicki Clingan (24:35):

Well, you have to hit those qualifications,

Erin Hogan (24:36):

Right? My wheels are spinning and I'm like, maybe I could volunteer, but I don't think I qualify.

Vicki Clingan (24:44):

Justice Center staff cannot be volunteers, unfortunately, because we run the program. But yeah, I mean, advocate is pretty broad. An advocate for people with disabilities. We want you to have some knowledge of what it's like to support someone with disabilities or what it means to that person to have those types of disabilities. It is pretty broad though. I mean, usually that would mean somebody's worked in a field that was related to, it could be a nurse at OPWDD who retires and wants to do this to support people in retirement. Yeah, there's a lot. It's pretty broad, but you do have to have some qualifications. And you can check out our website for details on that. And that's justice center.ny.gov/volunteer.

Erin Hogan (25:26):

You probably rattle that off all the time. Absolutely.

Vicki Clingan (25:30):

Yeah. So please look in there if you're interested. All the training material is also available on there. You just do the trainings at your pace when you have time. They're brief little, I think they're all about a little less than half an hour, so that you can do one and take a little break. And if you have questions or if you want additional information, all our contact information is up there. And we have a wonderful volunteer team who loves to talk to volunteers and prospective volunteers if you have questions.

Erin Hogan (25:58):

What would the time commitment look like if we have someone out there listening who is saying, “yeah, I'm interested. I feel like I fit the criteria.” What does that look like from a time commitment standpoint?

Vicki Clingan (26:07):

You get to choose. So really this is, you say when you're available, when hearings get, as we've sort of experienced, it's specific to the need. So there's a hearing that gets scheduled in your region for three o'clock next Friday, you'll get an email from a contractor saying, who's available at three o'clock next Friday? And if you're not available, you opt in. So you would say yes, if you're able to do that. Hearings can take probably on the long end, two hours. We say schedule two hours just in case. Usually they're less than an hour, but we can't really say because it is all based on what the need is.

Erin Hogan (26:43):

And so for our listeners viewers, what would you say is the most important piece of SDMC that you'd like them to know? When you're talking with folks out in the field, I know you do presentations often. What do you really like to hammer home about the process and about the folks that you interact with through the volunteers, et cetera?

Vicki Clingan (27:04):

Yeah, absolutely. I think you just mentioned that we do trainings. I should also note that we will do a training for your program. If you're interested, just contact us. But I think we've said many, many times here, contact us, call us. We are available. SDMC unit, we answer the phone. There's a person who will answer your call. If we're unavailable, we return phone calls pretty quickly or send an email. We want to help. We want to help the people who need the decisions, but we also want to help you to send in an application and get what you need and have it happen quickly. So that's not an exaggeration. When we say call, we understand that these things can be really specific and that some of the terms, this is not a legal process that goes through the courts, but some of the terms can be confusing.

Declarant declaration, there's an oath, it can sound intimidating. We will walk you through that process. We will give you the tools you need to make sure that what you send in is appropriate. If you're confused, call us. If you don't know what to put in a section of the paperwork and you don't want to watch a video to figure it out, just call. We'll help you. We'll tell you what needs to be there because if you send it in blank, we would have to follow up with you anyway. So we might as well just get it done on the front end and tell you what you need and have what the process is going to be. Because we understand that people are not doing this every single day. We are. So we're pretty good at answering those questions every single day. But yeah, when you know that you have to come to SDMC and you're not really sure how it works, give us a call.

Cindy Pross (28:33):

Yeah, I would say echo that, but also add to that all of our nurses have been there. Absolutely. All of our folks that work in our department have been there with you in what you're doing. And they know how hard it is to get paperwork back from doctors and know how much information it is and know that you might be new to the person you're talking about. So we're there to help you get your paperwork done, to be comfortable with what you're going to testify to, know what to expect, answer any questions, all of that.

Erin Hogan (29:11):

Well, thank you so much for joining us today for this discussion. I thank you for what you do for SDMC, and thank you to all of our volunteers out there who might be listening, because I really think, to your point, volunteering to do something that's helping people. It's a commitment, but I, it's really impactful and powerful for not only the volunteer, but the individual being served. So it's a wonderful program and I encourage everyone listening to take a look on our site and learn a little bit more. But thank you. We hope to have you back again soon and keep doing that Great work. Thank you so much.