Episode 176 – What Would The Patient Want?

 

What happens when a family member or friend is incapacitated and they’re counting on you to make a healthcare decision for them?  Do you take the doctor’s advice for treatment?  Or do you push back, knowing the patient would never want the treatment the doctor is suggesting? In high pressure situations like this, the wisdom of someone like Viki Kind is invaluable. Viki is what’s known as a clinical bioethicist.  She helps families make good medical decisions and she counsels healthcare professionals on how to do right by their patients.  On the show, we examine what went wrong in situations where the patient’s wishes were not honored, and Viki offers practical advice for making decisions that are right for you. Viki Kind is a professional speaker, a hospice volunteer and author of the award-winning book, “The Caregiver’s Path to Compassionate Decision Making: Making Choices For Those Who Can’t.”

Viki’s website (free resources!)

 

 

Music: “True Blue Sky” by Blue Dot Sessions | CC BY NC | Free Music Archive

 

INTERVIEW TRANSCRIPT:

JANA PANARITES (HOST) – What happens when a family member or friend is incapacitated… and they’re counting on you to make a health care decision for them?  Do you take the doctor’s advice for treatment? Or do you push back, knowing the patient would never want the kind of treatment the doctor is suggesting? In high pressure situations like this, the wisdom of someone like Viki Kind is invaluable.

Viki is what’s known as a clinical bioethicist. She’s the rare individual who bridges two worlds, that of the healthcare professional and that of the family struggling to make the right decision. Viki is also a professional speaker, a hospice volunteer, and author of the award-winning book, “The Caregiver’s Path to Compassionate Decision Making: Making Choices For Those Who Can’t.”  That book was followed by her “Resource Workbook: Conversation Guide and Visual Tool Kit.”  Viki consults privately with individuals and with hospitals all over Los Angeles, where she joins us from today to talk about what she calls, the human side of ethics in healthcare. Viki, welcome to The Agewyz Podcast.

VIKI – Oh, thank you. I am so delighted to be here. Thank you for having me.

JANA – So I am leaving it to you to explain to folks what a bioethicist does.

VIKI  – Right.  It’s an unusual resource. So there are two kinds of bioethicists. One works in research. That’s not me. But those kinds of bioethicists are evaluating, Should we do this kind of research? What are the consent forms? What kind of dangers are we putting patients in – that’s one area.  I do what’s called clinical bioethics. So that means I work in the hospital setting and I work directly with patients at the bedside. So sometimes there are questions regarding, what’s the right thing to do? Grandma never told us what she would want so we’re trying to figure it out.

Or, the doctors and the family are arguing because they both have very different perspectives on what’s the right thing to do. And unfortunately, sometimes we have no family to speak to. And now we’re trying to make a decision for someone that is incapacitated, can’t tell us what they want, we don’t know much about them, and now we’re trying to figure out what’s the right thing to do. Every hospital has what’s called a bioethics committee or an ethics committee, which is a resource that everyone can use.  You just call the hospital operator and ask to speak to the ethics committee, and people like me can help you.

JANA  – Now, that’s something I wouldn’t necessarily think of as a patient or a caregiver. How does one become aware of that? I mean, it’s a fabulous resource.

VIKI  – You know, most people have never heard of it. And even when I do talks at hospitals, teaching doctors some of the same tools that I write about in my book, they don’t even know that they have an ethics committee. So don’t feel badly if you don’t know. It’s pretty common.  And one of the sad things is, is that a lot of times when I’m speaking to patients and professionals, they say to me, Oh, I wish I had known.  I could have really used someone like you when, you know, my loved one was in the hospital. So that’s one of my goals, is just to let people know that there are people like me everywhere.  So even if you’re worried about your loved one, and you’re sitting in Los Angeles and your loved one’s in the hospital in New Jersey, call the hospital in New Jersey and asked to speak to someone from ethics.  They’ll help you.

JANA  – Good to know. So I know that the work that you do was, in many ways influenced by your experience when you were very young of your mother’s stroke. I wonder if you could talk about that a little bit and share what you wish perhaps you’d done differently, and what you think you did right – or well.

VIKI  – Yeah, well, I was always a loving daughter, so I tried really hard. I think the effort was there. But I was only 21. I’m 55 now and when I was 21, I didn’t know what I know now.  We didn’t have the Internet like we do now. And I didn’t know anything about bioethics, right?  If I’d known now, I could have really helped her get what she needed. So back then, it was really a big struggle because I knew what my mom wanted. My grandmother had had a stroke. My mom had talked about what kind of condition she’d want to live in, versus would she want aggressive treatments. I knew what she wanted, but I didn’t know how to be a good advocate. And I didn’t know that there was an ethics committee.

And unfortunately, the doctor that was caring for her at the time, never honored my mom’s wishes. The doctor actually used her own religion, which was different than my mom’s religion, to decide what was right for my mom. And that’s not okay. You know, everyone is entitled to their beliefs and their religion and their culture and their choices. But doctors aren’t supposed to impose their cultural or religious views onto the patients.

Their job is to give you good medical information and give you the knowledge and experience they’ve had over the years. And then you’re supposed to take the medical information and then put it into the person’s life. What would my mom say? What would she tell me to do? What would she want? Right? It’s not about what the doctor thinks is right, what even the family thinks is right. What would the patient want? And I didn’t know about that. I didn’t know there’s actually something called substituted judgment, which says, we honor the patient’s wishes.

And so unfortunately, my mom lived in a condition that she would not have wanted for years. And I didn’t know how to fix that. Years later, when I started working in the healthcare industry, I discovered bioethics because I saw that these kinds of situations were happening 20 years later – that families still weren’t understanding their role in the decision-making, and doctors weren’t doing it right.

JANA  – Well, you’ve cared for a number of family members from what I read on your website. What are some of the other medical challenges you’ve taken on in your family?

VIKI  – So my dad had vascular dementia and heart disease and other kinds of issues, you know, as you get older. My aunt had Multiple Sclerosis and I was her primary caregiver, and she was amazing. It wasn’t till her later years that the MS really started limiting her. She had the most beautiful, optimistic attitude that really helped her. I took care of my brother after a traumatic brain injury from a car accident. And I also took care of another aunt that just had all the things you get when you get old.  So I’ve taken care of people with cognitive issues as well as physical issues. And it’s exhausting.  I’m a very good caregiver but I was never very good at caring for myself while I was being a caregiver.

JANA  – Uh huh. Did you confront other ethical complications with them, other than your mother, I’m saying?

VIKI  – You know, with my aunt because her MS wasn’t affecting her mentally, she was able to advocate for herself.  I think one of the biggest challenges with her was that people didn’t always believe her.  So they just discounted her because she was old and she was sickly. And she would say to the doctor, like at the nursing home one day, her blood pressure was fluctuating, and that happened a lot for her. The doctor said, We should send you to the hospital.  And my aunt, who is sharp as she could be, she said, No, this happens to me. I feel fine. I don’t want to go. And they said, No, we’re sending you – you don’t have a choice.

Well, no, you do have a choice. You have autonomy. You have the right to determine what’s best for you if your brain is clear. And so the doctor and the nurses were saying, We’re calling the ambulance.  So she gets me on the phone and I say, No, you don’t have to go. If you don’t want medical treatment, you’re allowed to say no. And so she said, Okay, I’ll tell them.  But they didn’t listen again. So then I had to get on the phone with the administrators and say, My aunt has the right to say no to being hospitalized.

We all have the choice regarding what happens to our body. And it really took me pushing. And it was just one of those examples you hear where, just because you’re old, doesn’t mean you’ll get listened to. And that people think they know better than you. And they may know differently, but people have the right to decide what’s best for them. She knew that the doctors had already tried to resolve this many times. And there wasn’t a solution. She just wanted to stay and relax and just be okay where she was.

JANA  – Mm-hmm. So I know that you work a lot with members of the medical community. What sort of ethical dilemmas do members of the medical community face that might not occur to the average person who has to see a doctor or go into a hospital?

VIKI – Oh, I’m so glad you asked this. There is a big issue that really frustrates physicians. And one of the reasons that these arguments happen between the patient and the doctor or the family and the doctor, and it’s something that we used to call medical futility, a better word for it is medically inappropriate or medically non-beneficial treatments. There are times when patients are so desperate, and I totally understand that. They want everything. They want what they read about on the Internet.  They want magic, right?  We all do when we’re ill.  And so they sometimes start demanding treatments that aren’t actually good medicine.

The medical choices should be these three choices. But they want something else that’s not medically appropriate, that the research says this won’t work. For example, antibiotics will cure bacteria, but they don’t cure viruses. And a lot of people demand antibiotics when the doctor knows, you can take this pill, but it’s not going to help you. So there’s a lot of frustration because the doctor has a legal and ethical obligation to only offer you things that actually have a chance of benefiting you. But then these families will threaten them or the patients will say, I’ll sue you if you don’t do this. And then they’re starting to feel like oh, my goodness, wait, I want to help this person. I’m offering all these other choices, but I can’t give them that one because that’s bad medicine.

So one of the tools that I teach both families and professionals is called the two-hand test. And basically, it’s two questions we ask, and for the patient to get a certain medical treatment both answers have to be yes. The first question is, Is the treatment good for the patient – like medically valid.  Good, like other doctors would also offer it. Like standard of care. So that has to be a yes. If it’s a no, then the doctor shouldn’t offer you bad medicine.

The other question is, would the patient want it? Right? Because patients should have the right to choose from the correct medical choices. So it has to be good for the patient, and wanted by the patient. And there are times when the doctor says, Please let me give you this chemotherapy, for instance. And the patient’s like No, I’m tired. I don’t want any more chemo. And the doctors like, Please let me help you. And the patient says, No.  If both hands aren’t up, like both answers aren’t Yes, we don’t do it.

JANA – That’s tough.

VIKI – It is tough. And the opposite is true. There are times when the family says, or the patient says, Please give me that chemo. And the doctor says, No, I’m sorry, we know it’s not working, it’s not shrinking the tumor. And the person will say, I don’t care if it doesn’t work, give it to me anyway. And you can hear how… wait, that’s right – we shouldn’t do things that aren’t going to work. We all want it to get better.

And so the beautiful thing about understanding that there’s two sides to this decision, that the doctor’s job is to give you good information and good medical choices to choose from, and that the patient gets to determine what’s a worthwhile outcome. Right?  But these are separate things. The doctor doesn’t say, What kind of living or life you should have after the treatment. How sick Are you willing to be? What kind of end of life choices do you want? That’s not the doctor’s decision, because the doctor is not going to live with it.

I’m going to go home and live with the treatment or that recovery from that surgery. So the patient gets to determine what kind of outcome is worthwhile.  What would be a meaningful recovery? What did they want to choose? And the doctor offers the appropriate choices.

JANA – Uh huh. Can you think of a specific example where there was no one to speak for an incapacitated patient, and a decision had to be made, and perhaps you were called in. What happens in a situation like that?

VIKI – Oh, this is a huge problem. And this is a growing problem across the country.  So this is going to be one of those next, like epidemics of social problems that’s coming toward us. In many states, they have either our guardian or a conservator-type of law that says the court picks somebody that’s been trained to become the patient’s decision maker. The court says, They’re a good choice, they can step into that role.

But they don’t know the patient, right? Because this person is now too sick, too ill to speak for themselves.  And the whole reason they don’t have anyone is either maybe they’re estranged from their family, or they were very introverted and they didn’t have a lot of friends or they just outlived everybody. We call these people – some people say the un-befriended, or the unrepresented or adult orphans. A lot of those words are so painful even to say.

JANA – Yeah, they’re so clinical sounding.  Impersonal

VIKI – Yeah.  I mean, un-befriended – you know, like you don’t have a friend in the world?  But, a lot of people don’t have friends that they want to trust to make important decisions.

JANA – Sure.

VIKI – You know, you have friends that you go to coffee with, but do you want them to know all your business and stuff?  So some states actually have good laws, and the courts can assign someone to go in there and become this decision-maker.

JANA – Will the physician or the administrators make that connection, and say, We need somebody here for this?

VIKI – Yes.  So that’s how it usually happens.  So I’m in California, and it used to be the hospital, we would get one of these patients, and then the social workers would do what’s called a diligent search. They would call the police to say, Do you guys know who this is? Can we fingerprint them? Can we call the other place where they’ve been living – the nursing home? You know, they basically search as much as they can to see if they can find anyone that knows this person.  If they don’t, then they call the court and they say, Hey, we need help. Can you send somebody – a guardian or a conservator.   That used to work out just fine, but we have so many unrepresented patients in California, we don’t have enough of these public guardians.

So the guardian’s office says, Yeah, we’ll send you someone in six months.  And we’re like, No, we need a consent form – she needs surgery in the next couple days.  We need someone to sign the consent form. And they’re like, Well, we don’t have anybody.

JANA  -So what happens then?

VIKI – This is the nightmare that’s happening across the country.  So it may be happening in your state, too.

JANA – Yeah, I’m in Florida. I don’t know what the laws are in terms of incapacitated patients. I know a little bit about guardianship laws, but in the scenario that you presented, that’s dire. That’s a dire situation.

VIKI – Right. So Florida actually has a really good guardianship program. And there’s a lot of people who are guardians for Florida. I’m sure they’re starting to run out, just like us. I’m not familiar with where they stand right now. In California, we create what we call surrogate decision-making teams.  Some members of the ethics committee, some of our community members that are on the ethics committee, you know, to be an outsider’s voice, and the healthcare team will meet together, and we will make decisions doing our very, very best for that person using actual bioethical strategies and processes to make good decisions.

In New Jersey, they actually have community ethics committees that will go into the nursing home and be a decision-making team. They have a wonderful program where, kind of across industry, so it’s not just people at the nursing home making decisions, because then you never know what the motivations are. But this is a large regional process where people will step in, maybe a team of five people. You know it might be a nurse or a social worker or a community member or an elder law attorney – like a group of five different people that can sit together and think about everything, review the medical issues, think about the quality of life issues and do their best to make decisions.

JANA – Wow, that sounds really challenging. Your heart goes out to that person who has no one to speak for them and cannot speak themselves. It’s a real argument for building up your community, that’s for sure.

VIKI – Definitely. When I’m doing a lot of trainings for guardians and conservators at their conferences, I remind them that it is our highest ethical obligation, because not only are we speaking for somebody who can’t speak for themselves, but they don’t have anybody there that’s advocating for them from a personal point of view. Like I loved my aunt.  You know, I would do anything for her. So whether I was a guardian or I’m just a family member, I knew her. I could explain what my auntie would want. But these individuals, they have nobody. And a lot of places they have no protections.  Because some states don’t even have guardians.

JANA  – Wow.  Well, Viki, maybe this is a good segue-way for you to explain what a Quality of Life Statement is, and what its purpose is.

VIKI – Oh, wonderful. Thank you. So a Quality of Life Statement is an attachment or an additional set of information you can give to your doctors. And you usually attach it to your advanced healthcare directive or your living will whatever they call that document in your state. In every state, they have some kind of document that you say who you want to make your decisions, what kind of decisions you would want. And then there’s usually a section called “Other.”  And then you write in there, you say, See attached. See attached Quality of Life Statement. And what it is is a template, and you can actually download it on my website, and basically, it’s a set of questions that describe what is important to you.  Because the doctors know what good medical choices might be, but they don’t know you.

And even these forms that we fill out in our states, they’re kind of bland and legalistic and they all sound alike. I want something that sounds like you.  And there’s a number of questions you can answer – answer as many or as few as you want. Don’t write huge amounts because the doctors; don’t like to read pages and pages.  But the three that I really think we have to write at least a paragraph about is what is important to you?  Or, what makes your life worth living?  Because I want to get a sense of you in your environment and what makes you happy.

Like one person told me, The sound of my grandkids’ giggle. Another person said, I love to sew, or I love to volunteer, right? I want to get to know you, because the more personal you can become, and more real you can become to the healthcare professional, the more their heart gets connected to you. And I think better decisions get made. We don’t want you to just be a body in a bed.

JANA – Yeah. Well, it’s person-centered care, right?

VIKI – Absolutely. So the second question I ask is, What would be a fate worse than death? Like what would be a horrible condition to be in?

JANA – Ach.  Being in a vegetative state.  I’d want the plug to be pulled.

VIKI – Right. Okay, so the other thing I would remind you is that you want to not just use a few words. You want to be a little bit more descriptive.  Because the language of the legal documents is the vegetative state, which means pretty much you’re not communicating, you’re just laying there. But there’s different ways that you can be in that same state that aren’t called vegetative.

And I was called in to be an expert witness on a legal case, and after that experience – that’s when I developed this little template, this Quality of Life Statement. Because the judge decided that because the patient was a slightly different name of a cognitive problem – like this was an Alzheimer’s versus dementia situation – the judge said, Well, he said, Alzheimer’s in his directive, but he has a different kind of dementia, so I’m not going to respect this document.

She took it literally. And he was trying to say, I don’t want to just be laying there. I don’t want to not be able to talk to my family and enjoy the things that bring me happiness. You know what I mean?  That’s why I want you to be a little more descriptive about not just what kind of conditions, the names of the diseases you wouldn’t want, but what kind of condition would it be?  Like I could have all sorts of physical limitations, but I don’t want to like just be parked in a hallway. This is literally something I wrote in my directive. I posted mine online. I don’t want to just be sitting parked in the hallway of a nursing home, just slumped over.  I don’t want that.

JANA – Right. That is very, very specific and visual.

VIKI – Yeah, I don’t care what condition got me there.  The fact that I’m there and I’m just being parked. You know, there’s a lot of things that I wouldn’t want.  Like I wouldn’t want to have a kind of dementia experience where I don’t recognize my husband and I’m becoming violent.  You know, because a lot of times, people with dementia get really scared, and they start lashing out and acting out. So I’ve listed maybe eight different things, very specific, that I wouldn’t want to be in that kind of condition. And I don’t care why I got there. I just don’t want to be like that.

JANA – And that came out of your experience as an expert witness.

VIKI – Oh, yeah. I mean, this case was a nightmare. The other question that I ask – that third one – is, What would be an acceptable level of better? That’s a fancy way to say it. I would also say, what could I live with? I wouldn’t like it, but I could live with it. So I could live in a wheelchair. I could live if I couldn’t see or hear. I mean, there’s a lot of things I could live with and I could still have joy.

JANA – Yeah – sure.

VIKI – Whatever we define it as.  This poor man – he had a type of Alzheimer’s that made him very paranoid. He was miserable. And he’d written in his directive, “if I’m not enjoying my life.”  But he never explained what that meant. And so the judge said, Is he able to enjoy his life?  And the court, the family and everyone said, Maybe two hours a day he’s comfortable and can sit and watch TV or something, two hours a day. And so she said, Well, so he’s miserable only 22 hours a day, so therefore he’s enjoying his life.

JANA – This was the judge speaking.

VIKI – This is the judge speaking.

JANA – And was this an administrative hearing of some kind?

VIKI – This was a guardianship situation, whether we should honor his advanced healthcare directive. And I just wanted to scream.  I wanted to say, How dare you.  That’s how you measure your life?  Not being miserable two hours a day is what makes your life worth living? Now, there are people that are willing to live in all sorts of horrible conditions, because they’re profoundly religious and all life is precious. And I respect everyone to determine what that looks like for them. But if you don’t tell us as healthcare professionals what that looks like, like even if I’m just laying there, but my family can come and pray with me, and I don’t even see or hear them, but it’s still okay. Write that down, because I will fight for you. I will advocate for you, but I can’t guess.

JANA – It seems to me that it is quite a challenge for us, as individuals, when we are patients, to take on the responsibility of taking care of ourselves.  Not so much physically but determining our fate, and participating in our fate. We’ve kind of bought into this idea that the medical model doesn’t really promote that, nor does the pharmaceutical industry promote that, you know?  It promotes the idea that anything can be fixed with a pill. And the medical model is very institutionalized and promotes the idea that we’re going to take care of this. It’s paternalistic, I guess you could say. But what you’re talking about is really important because it raises the issue of all of us being very proactive with our health care on multiple levels.

VIKI – Right.  And you know, and a lot of times, it’s just the way people ask it.  Like, I’ve had doctors say, Here’s the dying form.  You want to fill it out?  [laughter] Um… No, doctor, I don’t want to fill out this dying form. One of the beautiful things about the Quality of Life templates that I encourage people to use, is that it’s personal. There’s a question it says, What religion are you? Do you practice your faith? Tell me about that. Because that is important, especially when people are dying. You know?  That we should make sure that if we need to get the priest there, or the shaman, or the rabbi or whomever – we need to do right by you as a person, not as a body.

You know, my other favorite question is: Reassurances From My Decision-Maker. And I created that because I have the most wonderful husband, he will take good care of me, he will honor my wishes even if he doesn’t completely agree with them because he’s incredibly ethical and kind. And so I wanted to write something to him, just a little paragraph about how much I understood how hard it will be for him to let me go when the time comes. And I wrote up something saying, Take some time, you know, cuz I don’t want you to have regrets. But I know that you will do right by me. But take the time you need.  Do the research you need.  And I also told him, You don’t have to get super detailed.  Because he’s such a smart person, he’s so detailed that I could see him doing research for like six years. [laughter]  You know?  Making sure it’s the right decision, right? You know, because that’s how he thinks. He’s very focused and logical.

JANA – Uh-huh. He drills down.

VIKI – He drills down.  And so I just said to him, Well, you know, you don’t have to be super detailed like that. And I showed him what I wrote. See, this is the other thing you have to do. You have to show people what you’re writing and see if they actually are understanding it. Because he says to me, What do you mean by that? And I explained to him, he goes, Oh, okay, then just write: don’t go into super perfectionist mode. Because that way, I’m giving him permission to do a lot, but he doesn’t have to make himself crazy. Right? And that I want people to feel like somebody is holding their hand. I won’t be able to be there and support him while he supports me. I’ll be out of it, right?  But I wrote things on there that would make him feel loved and appreciated and supported.

Like one of the questions, some people I have them answer is, Why did I pick you?  Why did I pick you as my decision-maker?  And one person wrote down: because you know how our other sisters get.

JANA – The truth comes out.

VIKI – The truth comes out. But here’s the thing is, the doctors know nothing about this stuff, because they don’t know you. And if they look at a form that’s just legal language, they’re like, I don’t know what it really means. It doesn’t sound like the patient. But if they have this little extra bonus information, and they go to your family and they say, Does this sound like Viki? And my family will go, Oh, my gosh, it sounds just like her.  It gives us all confidence to do the right thing.

JANA – Sure. Now, Viki, are there a lot of folks out there who do what you’re doing? And do you see a surge in this direction?

VIKI – There are a lot of bioethics people that work in academia, working on studying things, which is wonderful. We need them.  Then we have – not every hospital has an actual bioethicist, they usually just have a committee with a team of people that have some knowledge but they may not be experts. So the field is actually really growing. But most of the time, they’re not just doing pure bioethics. They’re a nurse, and a bioethicist. They might be a chaplain and a bioethicist.

We’re very multidisciplinary. So we have people from all sorts of different professions that also do bioethics. I don’t know many people that are a bioethics professional like I am.  I’m really unusual because I do spend some time in the hospital setting.  But I spend the majority of my time out in the public, teaching families, speaking at conferences. I speak at Alzheimer’s Association conferences, caregiver conferences, elder law attorney conferences. I am trying to teach these amazing bioethics tools out into the community.

That’s why I originally wrote my book because I realized when I was taking care of my dad with his dementia, that I was using these amazing bioethics tools that helped me know how much to step in, when to let him make the decisions, how to protect him when there’s danger.  There were these straightforward tools. And I’m like, I’m using these really easily, and it’s making it so much better for my dad to still feel included and empowered, but not to be allowed to be making dangerous decisions he’s really not up to making. And so I wrote my book, and that really propelled me out into the community because now all of a sudden, these tools work so well.

I’ll give you an example. A gentleman that I was training at a conference he was in his early 20s. He was there because he was taking care of his grandpa. After I taught him the four tools he says to me, I get it. My grandpa is about, mentally, like an eight year old.  Eight year olds don’t drive, therefore, I have to take away the keys. And it gave him such peace of mind and peace of heart. He knew before he came to the meeting that he needed to take away the keys.  But it only felt like a feeling, right?  But there’s a little formula, structure, framework that you can use to figure out literally what to do.

JANA – Well, type-A people like me tend to make decisions fairly quickly. But in a medical crisis, you encourage people to put the brakes on and find out how long you really have to make a decision. I wondered if you could maybe offer some other tips you have for crisis decision-making?

VIKI – Oh, yeah, I’ve had the same problems. I’m just as human as everyone. I mean, seriously, when I’m in my own moment, I sometimes will actually like pull out my own worksheet and be like, now what am I supposed to do? And I’m just like you – I’m a high information person. I want a lot of knowledge and there are times when you really just have to act. They’re rare where you shouldn’t take much time.

Usually, you need to slow down because the doctor is saying you need to hurry, because it’s convenient for their schedule. I’ve got to get back to clinic.  You know, I have other patients that I have to do surgery on. So it’s kind of this artificial push. And I don’t think we should be making important decisions without asking better questions. So I want people to find out three things, you know, and two of them are the things that we usually find out about. Doctors will say, These are the risks, and these are the benefits. If we do this surgery, here’s how it will benefit you. And here are some of the risks.

The one question they don’t usually discuss is what’s called, the burden. They don’t say, Here are the burdens of living with this decision. What’s it going to feel like? And this is a question I teach people, whether it’s for yourself or for somebody else where you’re making their decisions. What will it feel like and be like for dad to experience this decision?

Because dad is going to have to go through open heart surgery. And the doctors are only focused on the hours and days you’re in the hospital. They just want to make sure that you know what will happen and what the dangers are in the hospital. And then the minute you leave those doors, they don’t have a lot of opinions about that. I mean, of course they do – they want you to follow their instructions.

JANA – Right.  They’ve done their job.

VIKI – They’ve done their job, and that’s their expertise. I’m not blaming them. They can’t know everything about everything. So after the surgery, my dad’s surgeon, he was amazing. He told us everything. We knew pretty much what to expect for the first week. And then my dad got discharged, and nobody told him about the pain he’d have in the incision for his leg – so they took one of the veins, or whatever they took – nobody told him how weak he would be. Nobody told him it would take a couple months to feel better. Nobody said, What kind of condition will you be in afterward?

Like, yes, you got through the surgery even you got through the recovery, but how are you afterward? How are you changed by this? What did this do for you? And what does this do to you? So even in a crisis, even when you’re in a hurry, you can have the doctor at least realize that you’re interested in some other information. We want to know the risks and benefits, and they’ll tell you about different alternatives. But they also need to tell you about the burdens.  Because the doctors don’t stay in the room. Nurses can tell you about the burden. If you ask a nurse what they want at the end of their lives. Oh, they know exactly.

JANA – Right. Well, Viki, I want to let you go. But before I do, I want to ask if there’s anything that you’d like to add that we didn’t talk about, and of course, how people can learn more about your work.

VIKI – Oh, thank you. Well, I just really appreciate this opportunity because healthcare is not just about medicine.  It’s about humanity, and compassion and the whole person. And so that’s why I take this seriously, because I see what happens to people and it’s not right. You know, we have to do better.

How people can reach me – I encourage people to contact me through my website at kindethics.com.  On the resource tab, there are all sorts of different documents and worksheets and questions you can be using in decision-making, that you can download for free. If you want to order a copy of my book, I sell it through Barnes and Nobles and some independent sellers. I don’t use Amazon anymore, and my workbook, which is all sorts of tools to help you literally see how to make decisions instead of just being about words and language, there’s visual tools.  That one you can only order directly through me.

JANA – We’ve been speaking with Viki Kind, a Los Angeles-based bioethicist who helps patients and family members make better decisions regarding their health, life and end of life.  Viki also works with medical professionals, and she’s the author of an award-winning book titled, “The Caregiver’s Path to Compassionate Decision Making: Making Choices For Those Who Can’t.”  We’ll have a link on the Agewyz website to Viki’s website where you can learn more about her work and connect with her. Viki, thank you so much for being on the show. And thanks for the work that you do. It just sounds phenomenal and it’s been a pleasure chatting with you.

VIKI – Oh, thank you. Thank you so much.