On issues of pediatric ethics and clinical ethics at the Cleveland clinic

© 2012 A.S. Kurlenkova, K. Weise

K. Weise is interviewed by A.S. Kurlenkova

 

Information:

weiseKathryn Weise, MD, is a pediatric intensivist practicing in the Pediatric Intensive Care Unit at the Cleveland Clinic, where she is also a member of the Department of Bioethics, immediate past Vice Chair of the Hospital Ethics Committee, and Program Director of the new Cleveland Fellowship in Advanced Bioethics.

Her medical school training was at The University of North Carolina in Chapel Hill, followed by residency in Pediatrics at Rainbow Babies and Children’s Hospital in Cleveland and fellowship in Pediatric Critical Care at the Children’s Hospital National Medical Center in Washington, DC. She practiced pediatric critical care at Rainbow Babies and Children’s Hospital in the Department of Pediatric Critical Care and Pharmacology, and the University of Virginia Department of Pediatric Critical Care before coming to the Cleveland Clinic in 1997.

She completed a degree in Biomedical Ethics from the master’s program at Case Western Reserve University in 2000, has subsequently become adjunct faculty in the Department of Bioethics at Case and at Cleveland State University, and has served as a preceptor for the Case master’s program clinical rotations at Cleveland Clinic.

Nationally, she serves on the Ethics Committee of the American College of Critical Care, is a member of the Bioethics Section of the American Academy of Pediatrics, and has served on the Board of the Bioethics Network of Ohio.

She is the Director of the Pediatric Palliative Medicine Service at the Children’s Hospital of the Cleveland Clinic, and is board-certified in that field. Her interests include pediatric critical care, pediatric end of life care, care of children with multiple handicaps, clinical ethics and professional ethics1. (Information is retrieved from

http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=2549)

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Key words: bioethics, traditional medicine, biomedicine, complementary medicine, alternative medicine,  social and cultural values, best interest, death and dying

Abstract: In the interview Kathryn Weise tells about her career path in the sphere of bioethics, talks the peculiarities of ethics in pediatric practice, shows interesting examples of Cleveland clinic practice and describes in detail the organization of bioethics department activities in Cleveland clinic.

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A.K.: Please talk a little bit about how you came into the field of bioethics, and your education, and what you do now in Cleveland Clinic.

К.W.: Ok. I’m trained as a pediatrician, never practiced general pediatrics; I’ve got specialty training in Pediatric Intensive Care. So all of my clinical practice has been hospital-based, and for 23 years it was all intensive care in pediatrics. In about 1994-95 I was working at the University of Virginia in the Department of Pediatrics doing critical care and became more interested in end-of-life issues in pediatrics. My office was around the corner from Bioethics Department of the University of Virginia. So I started out just by asking questions from the faculty there. One of them was John Fletcher who was very well-known in the field of bioethics. He was very supportive to me, I was trying to learn more about things. And I audited a medical school class on bioethics, it was a one semester course. I think because I had some clinical experience they asked me if I would start precepting some small-group sessions for the medical students, so that I could make it a little bit more real to them. I did that for several years, and while doing that I realized that I didn’t really have enough educational background to feel like a good educator. I didn’t have the basic readings in bioethics, I was just learning it by doing and reading a little bit here or there. So I decided that I wanted to go back to school in bioethics. By that time it was 1997 or so. I couldn’t figure out a way to do at University of Virginia, and still do all the other parts of my job. A position became open at the Cleveland Clinic in the Pediatric Intensive Care Unit, and I was advised by Dr. John Fletcher that there was good program at Case. I did my original pediatrics training at University Hospitals, at Rainbow. I knew the city, still had friends there, etc. And I came to work at Cleveland Clinic and applied to the Master’s program in 1998. I did it part-time about a year and a half still working in the ICU. I graduated with that Master’s in 2000.

 

A.K.: So you were among the first graduates from this program?

К.W.: Well, it had been going for 5 or 6 years. We had 13 of us in the class. Now it’s huge. Then it was very nice small-seminar’s sessions. I thought it was very nice because it exposed me to people who were not physicians thinking about medical ethics. It was a very different view and very enriching and stimulating. Some physicians were teaching, others were not. That really helped grow my understanding of different viewpoints in the area.

As I was doing that, I was getting more involved in the Cleveland Clinic’s Department of Bioethics. I started sort of shadowing to learn to do consults. I was already doing some teaching in this area for pediatric residents. Gradually, it ended up making it a formal appointment in the Department of Bioethics. Now it’s a blend of about 75% of my job and salary that comes from the Department of Bioethics and 25% of pediatrics which I do at a children’s rehabilitation hospital  for children with severe injuries or handicaps, or dependence on medical technology. We are training families to take care of them at home. It uses some if my ICU skills with technology, but it’s a different environment that allows me more time to do my work in bioethics.

 

A.K.: Could you please talk more about peculiarities of pediatric medical ethics as opposed to adult ethics?

К.W.: Yeah, decision-making process is very different, because we are depending on surrogate decision-makers almost all the time. In the United States – and not necessarily in Canada (several miles away!) – there is a presumption that children do not have the capacity to make decisions. Everybody understands that by teenage years children are developing that capability/capacity, but they are differences between the legal definition and sort of developmental definition of when somebody is able to make decisions. I think the ways physicians respond to decision-making issues in pediatrics are different than the ways internists, or adult surgeons, or whatever, would. Because we need to recognize that children have a growing interest in voice, but they are still vulnerable – they are not fully developed and adults still have legal responsibility and right to make decisions for their children. Pediatricians tend to be more may be a little bit paternalistic feeling that parents don’t always make safe decisions for children. When we are involved in solving an issue, we need to find a balance between parent’s right to make decisions but not allowing harmful things to happen to children because of it. So there’s no full autonomy. There’s often a question about whether we should hold our ground, you know be strong and say, ‘You have to do this’. Or have a little bit of humility and recognize that sometimes parents know better what might be better for their individual child or child’s family. And try to work that out.

 

A.K.: You know one book comes to my mind. I’m not sure if you are familiar with it, it’s called “The Spirit Catches You and You Fall Down…”2

К.W.: (laughter) Yeah, I love that book!

 

A.K.: In this book the decisions made by physicians were so tough, it was extremely hard for them to balance respecting traditional values and beliefs of the Hmong family, and on the other hand do what’s right from their professional view for the child’s health. As anthropologist, I’m mostly interested in the cultural side of bioethical issues. What would be your advice for the physicians in this story? I don’t know whether you had to work with people who have very different ideas about health and disease in your practice.

К.W.: Well, some. By the time somebody comes to an ICU, usually they’ve accepted fairly standard Western medical treatment, so might have sort it out. The Clinic have a lot of international patients. They might be referred in from Saudi Arabia, or United Arab Emirates, or South America. And somebody has decided that they need this kind of care, and a family has accepted that, or agrees to it. It’s not an emergency room, and everybody would automatically come right there, it’s sort of farther down the line in medical care…

 

A.K.: Still, ICU is pretty much unpredictable.

К.W.: Yeah, like we may get patients who come in through an emergency room and get set up with say meningitis or something unpredictable. There’s that part of the patient population. Some of it is much more predictable, like a planned heart surgery or a spine surgery for scoliosis or something. In planned admissions usually family understand at least part of what will happen, and they agreed to that kind of care. But there are still some challenges and problems that come from it. You mentioned alternative or complimentary medicines. Sometimes this comes up with international patients – requests for continuing medications that were recommended by a healer at home but are not part of what we use here. This could be very challenging, especially if a child is not doing well. Often the families say, ‘Yes, doctor, do whatever you need to do’. But if it’s not working well, and the child is getting worse and worse, some may ask to add another therapy that they were using at home.

I can give you an example. We had a young patient, may be 4-year old from the Middle East who came for heart surgery. She had a very difficult post-operative course and was in ICU for many many weeks on a ventilator. She was not able to be conscious because every time she would wake up she would fight against the ventilator, and her oxygenation would get worse, and her heart function would get worse. So we had to keep her in a medically induced coma for survival. It was hard to give her enough nutrition, because of issues with fluid balance, things like that. The family requested through an interpreter that we use a particular medication that her grandfather at home had been giving her to make her stronger before she came for a surgery. We did some research into what was in it. It was a homeopathic medication, we were able to determine that, and what the active ingredient was. It was arsenic in very low doses! And we thought, well, she was getting it before and there were no signs of arsenic poisoning when she arrived – that we could see anyway. I had a sample of it tested in our laboratory. Arsenic component was a little bit lower that arsenic component in Cleveland water. There is always a little bit everywhere, right? It’s like a tiny tiny bit. Nothing else unusual showed up in it, like heavy metals or whatever we tested, I forget. So I wrote an order in the medical chart, ‘May use this” (laughter). Because it wouldn’t hurt her and it might help the family, and may be in that way help her, because they would feel more comfortable.

 

A.K.: Did it help?

К.W.: Not that we could tell. She gradually got better. I don’t know whether it was that or anything else. She did eventually get discharged from the unit. It raised questions for me whether physicians should be using complementary and alternative medicines in intensive care setting. My conclusion is (at least with that case) if you can be sure that it won’t do any harm, than that’s OK. I was not willing to substitute it for things that we felt were beneficial. If they had requested, ‘Stop everything else and use this’, I probably would have said no.

 

A.K.: It is always weighing what the professional medical opinion is and what the family sees as the best treatment for him or her, right? I would be really interested in hearing some other examples of alternative type of medicines that family or patients insisted on.

К.W.: Hmmm… I would say it’s not asked for very frequently. We are very bad at asking families whether they’ve been giving alternative medications before. I do remember a case when I worked at a different hospital when a new-born infant who was 3 or 4 days old came in. Mother was breast feeding, and she was on many many different homeopathic medications. She was also giving to infant some feedings by mouth – certain kind of herbal tea.

 

A.K.: They weren’t  Americans, right?

К.W.: No, they were. They were fundamentalist Christian sect of some sort. They had family members who were homeopathic practitioners. So, the infant was not very vigorous at birth, and they started supplementing with certain kinds of tea in some expressed-pumped breast milk. And the mother was breastfeeding and she was on lots of different things. Infant came in in shock, almost died. They told us that they’ve been supplementing with various things, of course we stopped them all. The infant probably was not injured by those medications, she had what’s called congenital adrenal hyperplasia, it is a glandula defect, an inborn error of metabolism. It was not induced by the medications. And they did the right thing to bring her in at a right time. So they did nothing wrong. I felt uncomfortable that they’ve been treating her with things that were not medically tested in infants, so we did a little bit of counseling about that. But I also tried not to make them feel that they caused this problem. I don’t know if her treatment may have been delayed by a day or two, because they wanted to try these other things before going to an allopathic physician. The child did well in the long run. But it was a distraction to us. We tested for all of these things also, because we weren’t going to just assume that it was just alternative medications that caused the problem. So we would always check for you know other things as well. I think these things sometimes could potentially distract us from the usual diagnostic things.

 

A.K.: Going back to this book, do you think there are special socio-cultural values that determine ethical decisions in pediatrics? It may be my opinion, but it seems like the fact that the best interest of a child goes before their parents’ opinion is a pretty cultural thing rooted in American values.

К.W.: I think that it is something that evolved that direction in the United States. I haven’t worked overseas, so I don’t know for sure. But I would may be hear about different cultures where children are labors, and may be asked to do certain kinds of work earlier that they would in the US. And in the US we might consider going up and working in the fields on the farm or something early-early as not allowing them a normal childhood, right? And we see it as being different in certain other countries – parts of Africa, or I don’t know where… Even among certain populations within the United States, like the Mennonite or Amish cultures where the family’s work is on the farm, and it’s natural for kids to be part of that, and perhaps leave school earlier.. There’s an interesting book called I think “The worth of a child” by Tom Murray. He goes through some of a history of how children have been perceived in the United States. It talks about how our views of ownership of children have changed in the United States since 1900 when I think there were in the fabric of keeping an entire family alive, you know… Working around the house, or on the farm, around the city selling newspapers, or whatever needed to be done. Some interesting little things about how in the US animal welfare laws preceded child protection laws. ASPCA or some of these other organizations protecting cats and dogs from abuse were there long before any laws to protect children (laughter).

 

A.K.: For me an interesting point is the huge amount of trust in physicians and medical professionals. Despite bioethicists say that patients are becoming more conscious and want to make their own choices, still at least legally it is considered that physicians know better what’s in the child’s best interest than the parents, right? In this book although the parents had different views on what’s epilepsy and what triggers epilepsy, still the medical professional opinion is in priority.

К.W.: Usually. But there certainly are some legal cases when judges decided that the parents get to choose. I think one of the ways Mark Aulisio talks about it, if there is good evidence that something medical will help a child without being very burdensome, than it tends to swing in the direction of treatment recommended by a physician. But in these grey areas where it’s hard to balance whether it’s more beneficial or burdensome, or potentially even harmful, with not very much likelihood of helping, then parents get to decide. It’s almost as if there is recognition that some of what we do as physicians could be harmful, and some decisions that parents make are harmful. And we have to figure out which is more harmful and protect a child from harm. There’s an article of Douglas Diekema on harm principle, and it talks a lot actually on the legal system’s view that what we are really trying to do is to avoid harm, recognizing that nobody really knows what best interest is. Who defines best? So it’s a really insightful article.

 

A.K.: I would like to talk more about cultural perspectives in bioethics. Do you feel that there are any special socio-cultural values that are at the core of bioethics today in the United States?

К.W.: I think that the public view of medicine is swinging towards patients’ feeling that they have certain rights for medical care. And that we as physicians should respect these rights. And it has not been decided in the US that there are these rights (laughter). But I think that it all gets tied in with autonomy in the sense that we should respect what people want – respect for persons (a different way of talking about autonomy)… I think it’s very hard, because I don’t think there is one particular way of talking about it. That whole area of autonomy, respect for persons and patients right – what patients view as what they should be able to get or have – is very much in a sort of public media today. I think it drives physicians’ behavior quite a bit. And in the sense that there are professional obligations and there are ethical obligations that sometimes clash with that. I do think that this is a major driver right now.

 

A.K.: Do you still feel a kind of opposition between physicians and bioethicists inside the clinic? I mean physicians being pretty much resistant to give up aggressive care?

К.W.: Yes, but not in every case. And I think it’s evolving, I do. I think at the Cleveland Clinic there are certain subspecialties that are more reluctant to give up.

 

A.K.: Like surgeons?

К.W.: Well, yeah, certain areas of surgery. And I think that’s probably true everywhere, it’s not just the Cleveland Clinic. I think part of it stems from that many feel very very strongly that the agreement of a patient to undergo a surgery includes agreement to keep trying after surgery, right? It’s not just going to the operating room, going through recovery room and then may be a short ICU stay. If it turns into a long stay and there still is a chance of survival, many surgeons feel very obligated to continue, because they feel that’s the agreement they had getting in the surgery. Even if it wasn’t explicitly discussed. There’s an assumption on the part of the medical staff that this is a part of the whole package.

 

A.K.: It is a valid point of view, although bioethicists argue this.

К.W.: I think it’s a very valid point, but I also think there need to be limits based on our best ability to understand what the patient might have said had it been discussed explicitly beforehand. A lot of potential complication might be mentioned to a patient beforehand, but most patients don’t have an ability to understand what that might mean in terms of a longer ICU stay. They may be bright enough to understand, but they haven’t had the experience or seen anybody in that situation. So they don’t have a framework that would help them make it real for themselves beforehand. And I don’t know whether it’s really possible for us to do that in every case. We can’t predict everything either.

 

A.K.: Could you please tell me how bioethics is established in Cleveland Clinic?

К.W.: Ok. It’s a very old department, probably one of the oldest one in the country. A couple of years ago we had our 25th anniversary as a department. It’s growing quite a bit, initially it was one or two people, and it has gradually grown so that we have I think seven or eight people who do individual consults. Our usual model for a consult is as follows: if you are a nurse, or physician, or whoever, who notified us that you would like a consult, initially we would send an individual consultant on call. We could gather information, try to make an assessment, lay out ethically supportable options and then follow through as much as needed. Each consultant is on for one or two weeks at a stretch. He might be assisted by a fellow in our bioethics fellowship program, or other residents who are rotating through the clinic. And then we also have an ethics committee that is separate from the department, although some people at the department are members of that committee. And the committee is more administrative, sort of for policy development and the review. Occasional consults will go before the committee, instead of only as an individual consult. Things that might go to the committee may be things that have institutional impact or policy implications.

 

A.K.: For example?

К.W.: Let’s see if I can come up with an example. Ahh… Several years ago a private physician in the Cleveland community (who was a member of one of the joint practices that are sort of part of the Cleveland Clinic, but in the outpatient area, not here on the main campus) was approached by the mother of a teenage boy with developmental  difficulties who was going through puberty. He was starting to act out sexually and she was worried that he might impregnate his sister. So the mother asked the pediatrician to help her find a way to sterilize him. And the pediatrician referred them to urologist at the Cleveland Clinic, who was taken aback and said, I’ve never did it before and I don’t think we sterilize minors. It all came to me as an individual consult, sort of a pediatric consult. I did some research into what the American Academy of Pediatrics says, I looked up to see whether we have a written policy at the Cleveland Clinic, I spoke with people in the legal department to find out what Ohio laws were. Everything that I was finding made it look like it wasn’t’ justified in this particular instance. The Clinic didn’t’ have any specific policy, but the practice was, No, we won’t do that. There was sort of general understanding among physicians and ethicists that we don’t do that.

 

A.K.: Wasn’t’ it illegal anyways?

К.W.: It’s interesting that at least at that point Ohio law didn’t say that it couldn’t be done. It said that Ohio tax money, or like Medicaid money, wouldn’t pay for that. But there was nothing that said it was absolutely illegal. Many ethics opinions that it was not justifiable, or not supportable, were not written in any kind of a policy at the Cleveland Clinic. I wasn’t comfortable making that opinion myself, I wanted more opinions from other ethicists. So I took it as a consult to other members of the committee, so that we could have a more formal statement by the lawyers, some surgeons, another pediatrician, et cetera. And I thought that it was partly important to do that, because that would help that urologist to sort of disseminate that information among colleagues, and say, yeah, the hospital thinks this is not a good thing to do. But I wanted him to recognize that we took it very seriously.

Another kind of consult that goes before an ethics committee more frequently, a sort of automatic referral to a committee instead of individual, would be if physicians feel the care is so futile, and the family is insisting on this futile care prolonging life. If the physicians finally get to the point where they feel ethically obligated to discontinue support against family wishes – that often goes before the ethics committee instead of an individual consultant. The consultant will initially try to work it out, make sure that it’s not just a communication problem, make sure that all of the family members understand why the physicians think this care might be futile, et cetera. If there is an impasse than it would go before a committee, and the committee would make an assessment and say, this sounds futile or maybe not. So it might help make that kind of assessment. And then they would give recommendations to the team, yes, it’s ethically supportable to discontinue support, but you need to do x, y and z first. You need to let the family know they have a right to seek a second opinion elsewhere, to try to transfer the patient elsewhere, or whatever. And we still allow the physicians to make their choice of whether they want to proceed with something as momentous as that or not. We need to make sure that the processes are both ethically and legally supportable.

 

A.K.: May I ask you another question? I’m thinking about the way ethics committees may be established in Russian hospitals. And here I’m interested in the financial side of the problem – who pays for the work of ethics consult members here?

К.W.: Usually nobody (laughter). I think we are lucky here that the hospital recognizes that we have an important role in helping physicians feel comfortable, nurses feel comfortable, that the patients are heard and respected. And we have a huge educational role, so we track how many lectures and things are done by the ethics department every month, and it usually ranges between 30 lectures for medical staff. And actually this last month it was 51 lectures – and it’s everything from lectures to the residents on basic ethics and decision-making, to nursing education classes, some national or regional presentations. There’s a lot going on.

 

A.K.: It’s just wonderful. So instead of getting calls all the time, you just educate people.

К.W.: Yeah, we try to do it a little bit proactively. I think sometimes it makes them feel comfortable making these decisions with ethics impact on their own. Sometimes it alerts them to ethical issues that they weren’t even aware of. So sometimes we get more consults, sometimes we get less! (laughter).The Cleveland Clinic recognizes that we do have an important role in improving patient care, and physician and nursing comfort. There is so much moral distress among particularly ICU nursing staff, whether it is neonatal or adult surgical, or cardiac, or whatever, over some of these really sad cases. So I think we play an important role in hearing their voices and making sure that their concerns are heard.

 

A.K.: It’s wonderful that there it is no more a struggle between physicians and ethicists, but that they recognize they need help of ethicists…

К.W.: I think it’s grown to that here. John Fletcher – the man that I mentioned, he was at the University of Virginia, he is now deceased – he was very candid talking about mistakes that he made early in his career. He worked first at NIH looking at consent for research of human subjects, and then gradually he became more of a clinical ethicist. He was a sort of a very tall, imposing, stern-looking man, he had been an episcopal priest before he moved towards ethics, and he had the look of somebody up in the pulpit, you know really (laughter)… Stern, he was a very nice man… He said that he made huge mistakes both at NIH and at University of Virginia because he came across as if he was the one who knew how to do things, and everybody should do it that way. He talked about it as being more in a police role, and people didn’t like that at all. So he learnt to change his approach. And I think we are very careful in this department to try not to ever do that. We may have very strong opinions about something that is wrong, but we are very careful about how we talk about that, and try to be more educational about why this way might be better. We will put some very specific things in our notes in the chart that might say, this is the surrogate decision-making hierarchy in Ohio, or the physicians have an obligation to treat pain, even if the family says, don’t give him that drug. We might say, the ethical obligation is to provide comfort, or whatever for the patient. But we won’t say – you have to give morphine – that’s not our role, even if I’m a physician and I think morphine might be good, or fentanyl might be good, or something… You know, I’m not gonna give medical advice, I will give ethical obligations in the way that I hope does not make a physician feel that I’m managing the patient. So I give the reasons why it is ethically supportable.

Now, most smaller hospitals – and this may apply more to Russia, if you don’t have already a system for this, right – most have all volunteer people on a small committee that does consults. And they don’t get paid. They do it out of the goodness of their hearts, because they think it needs to happen. It’s difficult to sustain, but one of the reasons why it does survive here in almost every hospital is because the Joint Commission3 for the accreditation of hospitals, an independent group approved by the government that it needs to be there, has a bunch of people who go round and review what happens at hospitals. If they meet all of these requirements, then they are accredited which is like a pat on the back. Every hospital wants to be accredited, because it makes it look like they are better – better safety approaches, respect patient rights better, the whole bunch of different areas. One of these areas says that there must be a mechanism for dealing with ethical issues that arise. It doesn’t say that it has to be a committee, or you have to pay somebody to do it. They recognize that not every hospital has a budget that could have a huge department – as big as ours. It can be volunteer people, and that’s what it is in most places. So you might have somebody who is a hospital chaplain working with a physician maybe who is interested, a nurse, or a hospital administrator, or a lawyer, something. And they have to be able to hear complaints, somehow be educated enough to try to deal with the issues. The education part I think is a huge problem for hospitals with smaller budgets. But at least in US most hospitals have something because it is recognized as… Well, it’s not a law, because a Joint Commission is not a law body… But if you want to be accredited, you have to do what they say. And most hospitals want to be accredited voluntarily.

 

A.K.: You mentioned that you have to face a lot of death and dying issues in pediatric medicine. Do you think that our attitudes to death and dying are determined by culture?

К.W.: I think some of our responses are driven by religion, and how religion interacts with culture.

 

A.K.: Do you see a lot of religious people here?

К.W.: O, yeah (laughter).

 

A.K.: You know my assumption was that America is an atheist country before I came here.

К.W.: No, it’s not… Well, I think there are a lot of people who don’t go to church at all, and other people who are very very devout. A huge spectrum of how the Bible is interpreted… Not everybody in the US is Christian, but a lot of people are and read the Bible very literally. Others… it doesn’t come into their lives at all. I think often when families are refusing to accept death, or (it’s not the right term) when they are refusing to accept that the doctors know when death will happen, it’s because of the belief that God decides when. And they as parents, or in the adult world as children of dying adult or something, – their obligation as a family member is to keep praying and hoping that God will help this person survive. And that they as humans can’t say, ‘yes, take the ventilator off, it’s time’, because in their minds God will decide when. We see the same things with Islamic patients, whether they are American Islamic, or Middle Eastern. Some will say that we just don’t know – and I think they are right, we don’t know always, but we predict, right? But we don’t know why, nor when something is not gonna work. It does get us into situations when we might continue things longer than we think is good for the patient. Like, we think they are suffering going on, and we are being asked to continue. Or the only way that we could prevent suffering is by using enough medications so the patient is essentially comatose. And the nurses at the bedside feel like this is not what we were trained to do, we are trying to make people better, not to be sustained in a long-term near-death state.

 

A.K.: Do you tend to follow these wishes of relatives, or you have a strong say in stating that “this is futile, you should understand that you are prolonging suffering of patients”? How these cases are usually resolved?

К.W.: Well, I would say that usually we are trying to hit a balance in honoring relatives’ need to grieve and hope without causing further suffering for the patient whether it’s a child or adult. So we’d be very careful about to use enough pain medication or sedation, we will make decisions often about whether or not to escalate (наращивать количество обезболивающих) care. We can be very firm – and I hope fair – in deciding whether adding additional medications or technologies would be helpful, or only more burdensome and harmful. If a child or adult is going to die because of their underlying disease, then it will happen. But I think most American physicians are very reluctant to discontinue all support, like extubate, turn off the ventilator, if a family has not reached that point yet. And I think that’s a very uncomfortable thing for many physicians and nurses, because it does often feel like you are doing the wrong thing – like, you are not being helpful to the patient! You may be helpful in some way to the family as they grieve, but I think what is very distressing is feeling like we must continue to avoid a legal battle over what to do. Not having worked overseas I don’t think it’s the same as in other countries, I think from what I hear people would say, ‘it’s time to stop’, and stop! Here many patients in the US feel that it’s their right to demand continuing very invasive highly technological measures, even if there is only a glimmer of hope on everyone’s mind.

 

A.K.: Are physicians ok with this?

К.W.: Often not! But feel that it’s a very legalistic society. And I think many Americans feel entitled to everything, and if physicians are not doing everything, it’s a personal affront to them as parents or family members. There is so much in the media, whether it’s on the internet, television, or whatever, about miracles and people who have survived when nobody thought they would that many people assume that that would be their family member, they will be the one with the miracle. Most people don’t see what these miracles turn out to be in the long run. Maybe, somebody who survives, but without any cognition, fully dependent as an adult, in ways that might not have been what the patient wanted.

 

A.K.: I feel there is certain attitude to technologies in the US as if it is a form of magic – it looks similar to beliefs in traditional societies where people put so much hope on medicine men! There is the same type of hope among Americans turned to highly competent surgeons, technologies, and things like this.

Ok, thank you, Kathryn, this was a really valuable conversation. Thank you very much.

 

Notes

  1. Information is retrieved from http://my.clevelandclinic.org/staff_directory
  2. Fadiman, A., The Spirit Catches You and You Fall Down. A Hmong Child, Her American Doctors, and the Collision of Two Cultures
  3. jointcommission.org

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