SCCM Resource Library-Pro/Con Debate: The Spell Expires at Midnight: Rationing Care to Children

Video Transcription

Good morning, everyone. I'm going to go ahead and get us started. Welcome to the last and final day of SCCM. We're going to be talking about an important aspect of peds  critical care medicine, that of resource utilization and rationing in peds critical care. We have two excellent speakers joining us this morning. I'll introduce both of them.  We'll hear from them. And then we'll open it up to the audience for an ongoing debate. Amini Gavam is a pediatric intensivist and ethicist, now in her third year as junior faculty  at the University of Chicago Comer Children's Hospital. Dr. Gavam attended the Colorado State University, where she obtained a BS in biochemistry  prior to matriculating at the American University of the Caribbean for medical school. She next completed pediatrics residency at the University of Arizona, followed  by fellowship training in pediatric critical care at the Children's Hospital of Wisconsin. During her time at MCW, she also obtained a master's in bioethics.  She has published on various ethical issues relating to pediatrics and adults, primarily pertaining to organ donation, donation after circulatory death, and death determination.  She will present Rationing is Ethical and Should Occur. Following Dr. Gavam's presentation, we'll hear from Dr. Michael Ushe. Dr. Ushe graduated from Rutgers College  and obtained his PhD in bio and organic chemistry from Columbia University. After obtaining his MD from UMDNJ New Jersey Medical School, he did his internship and chief residency  in pediatrics at Montefiore Medical Center and the Bronx Municipal Hospitals. After fellowship training in pulmonary medicine at Montefiore Medical Center and critical care medicine  at New York Hospital Cornell Medical Center, he joined the faculties of New York Presbyterian Will Cornell Medical Center and Memorial Sloan Kettering Cancer Center,  where he served as pediatric critical care fellowship director and medical director of the Laura Rosenberg Pediatric Observation Unit. He moved to the Children's Hospital  at Montefiore in 2005, where he became medical director of the Peds Critical Care Unit. In 2018, he became the interim division chief of Peds Critical Care.  He's a professor of pediatric at Albert Einstein College of Medicine and an adjunct associate professor of medical ethics and medicine at Will Cornell Medical College.  He's board certified in pediatrics and pediatric critical care, a fellow of the American College of Critical Care Medicine, and former president  of the New York Society of Pediatric Critical Care Medicine. He's lectured regionally, nationally, and internationally on topics of intensive care medicine,  has been a member of numerous international heart surgery mission trips, and presently a member of the board of directors of Surgeons of Hope.  Dr. Ushe will present Rationing Pediatric Healthcare Outside the United States may be ethical, but the United States shall not join them. We'll hear from Dr. Gabon first.  Thank you for the kind introduction, Erin. Good morning, everybody, and thank you for letting me be here to speak on this important and timely topic.  So let's talk about rationing and pediatrics. Rationing happens in other countries around the world, is common, and is ethical. And my argument is that we should join them.  I have no disclosures or conflicts of interest. This talk will focus on providing the ethical basis to justify rationing, compare international and US health  care practices, review some of the implications of rationing as they pertain to children, as well as cover the international ethical standards for which limiting  and rationing are acceptable. I will discuss rationing in the following ways. First, we'll review the background of how we got here and the history of US health care.  Next, I'll demonstrate some pretty scary statistics regarding current and projected spending on health care. We'll review the ethics of rationing  using the four principles of bioethics as laid out by Beauchamp and Childress. We'll discuss the implications of rationing as they pertain to pediatrics.  I'll show a current example of rationing and pediatrics, the treatment for SMA type 1. And we'll round out by going across the pond  to Great Britain and see how the UK rations health care and how we compare to them. So how did we get here? Well, in the 1960s, we ushered in the modern era of medicine.  We saw the passage of Medicare and Medicaid, as well as increasing availability of employee-based health insurance. Medicine itself was making big, very expensive advances.  And the cost of health care per person began to double. This table here and many more later on in my talk come from the OECD, which is the Organization  for Economic Cooperation and Development. This is a forum of 36 member states with market economies where comparison of statistical, economic, and social data occurs and is shared.  This table shows that the US, on the far left, in 2018, spent a higher percentage of their GDP compared to any other developed nation on health care at nearly 17%.  Here we see the US on the far right hand, this side, showing us that if we continue to spend on health care unchecked at the current rate that we're going, by the year  2030, we'll be spending more than 20% of our GDP on health care.  And that's to the detriment of money spent on other important services funded by the government, such as education, housing, and infrastructure.  So what do we have to do to manage this continued crisis? Well, we need to ration. So I know there's a lot of people here today because it is the last day.  But those of you that are here, please participate. Please raise your hand if you feel like you've rationed health care in the last year. OK.  Let me rephrase that question a little bit to see if I can capture some of the rest of you that didn't raise your hands. Who has perhaps transferred a patient out of the ICU  that they feel like might have benefited from another, let's say, 12 or 18 hours of observation to make room for that patient in the ER who's  crashing or that really sick septic patient who needs a bed in the ICU? Please raise your hands. So everybody should probably be raising their hands.  These are examples of rationing right now that all of us are likely doing. So rationing is defined by the dictionary as the allocation of a fixed allowance  of a specified type of good or service to each civilian during a time of shortage. It's also been called scarce resource allocation or supply prioritization.  It's an emotionally charged term. And that's because of the fear people have of death panels forming if health care rationing were to be implemented more broadly.  And it's already being done in the United States by insurance companies when they choose to approve or deny certain services, by UNOS when they decide  who on the organ transplant list is going to get a vital and very scarce donated organ, and also by us at the bedside when we ration, albeit a lot of times unknowingly.  Rationing can be broken down even further. There is macroallocation, which refers to decisions made at a societal level, such as how to allocate funds.  It's presented in the form of policy, usually driven at the governmental level. There is microallocation, which is basically bedside rationing and decisions made by physicians.  There is explicit rationing, which are decisions that come from stated principles and rules, while implicit rationing are decisions whose basis is not disclosed.  And thinking about how to implement rationing on a more widespread scale, we need there to be more macroallocation, and the rationing needs to be more explicit in nature.  So rationing happens every day by physicians at the bedside. Examples of bedside rationing include prioritizing more time for one sicker patient over another,  making transfer decisions for those coming into and leaving the ICU, and ECMO utilization. ECMO is actually such a widely known limited resource  that at my own institution, we recently had the family of a patient with trisomy 18 and ARDS ask for an ethics consult on their own to discuss if their daughter would  be offered ECMO if she were to medically worsen and need it.  The problem with bedside rationing by physicians is that there is no way to ensure that the resources that you may be conserving are being put to good use,  which is an argument for the need for more macroallocation. And there can be large variability in how bedside rationing is performed, with the risk of some decisions falling  under the umbrella of implicit rationing leading to the potential for bias. So what is the goal of rationing? Basically, to make health care more efficient and equitable,  and thus keep it affordable in order to be able to provide it to everyone. And is health care rationing ethical? Well, my argument is yes, it is.  We're spending way too much on health care costs, with costs rising exponentially each year, with seemingly no ceiling as to how much we're  willing to pay at the expense of other services. Other countries have shown that they can ration and still have a happy and very healthy society.  And rationing is not a new phenomenon, even here in the US. It's already happening by insurance companies and even physicians at the bedside.  Rationing is necessary, and it is ethical, citing justice as the primary ethical principle in favor of an argument for rationing.  So when considering how to defend the ethics of rationing, you have to realize that every ethical debate on a topic is a balance.  And in this case, we're going to use the classic four principles of bioethics, as laid out by Beauchamp and Childress, to justify rationing.  And important to realize, in this balance, there will be some principles that carry more weight than others.  Distributive justice is the primary ethical principle one can use to justify the ethics of rationing. We need to adjust our resource use  so that we're maximizing overall usefulness for everyone. Different interpretations of distributive justice include to each one equal share, to each according to need,  to each according to effort, and to each so as to maximize overall usefulness. This distributive justice approach is essentially a utilitarian argument  in which everyone's well-being is of importance, and we should be trying to maximize overall benefit for the maximum number of people.  If we're able to institute a program of rationing, then there will be more money available for other programs, such as preventative care, housing, and education.  The overall well-being of society is not grounded only in their physical health, but also in these other important components, like education and housing.  Interestingly, when viewing rationing through a justice lens, it's important to remember that a lot of physicians have a powerful psychological impulse  to save those facing death, no matter what the cost. This is called the rule of rescue. And this impulse needs to be balanced  with efficiency and equity in order to save on resources. And if we believe that health care is a human right, then we must have more equal distribution of resources.  So what about beneficence? This is our moral obligation to do good for others. Well, this one's simple. Rationing will provide more basic resources to more people,  and we'll be able to do good for society as a whole instead of targeting resources to a select few. We essentially need a system in which all have some,  as opposed to what we currently have, where some have all.  Rationing through waste avoidance can demonstrate non-maleficence, as we spend a lot of money on non-beneficial interventions. One study from 2012 estimated spending  on non-beneficial interventions, consuming nearly 30% of US health care dollars. And it's important to realize that some of that over-treatment and over-testing  can actually cause harm to patients in the form of false positives and medication side effects. If our goal as physicians is to first do no harm,  then rationing needs to be implemented to avoid over-treatment and non-beneficial interventions.  OK, so what about autonomy? Well, this is usually the ethical principle that everybody starts with. However, I'm choosing to end with it because I realize that on the surface,  rationing will violate individual rights of autonomy, as some people might see them, through imposition of utilitarianism.  But I would go further and say that with the system we have right now, the autonomy of those with less money, and certainly some of the minority groups,  is being violated by their inability to access health care because of our current system. However, think about it this way. If an entire community, or even society,  decided that this violation of autonomy was the right thing to do in order to gain more benefit for more people, then is it a true violation of autonomy?  In this country, we place a lot of value on our individual liberties. After all, that's how we gained independence. The reason that rationing works so well overseas  is because as a society, they don't view their health care being provided as a violation of autonomy because they're in agreement with the need for rationing that resource.  But I said in the beginning that evaluating the ethics of making a radical change means weighing the risks and benefits. And in this case, you may lose some autonomy,  but the gains in justice, beneficence, and non-maleficence even out the scale.  OK, so we implement a system of rationing. What are some of the implications as they pertain to children? Importantly, the money you save on rationing health care  will help support other important programs like preventative care and education.  That money could also go towards more affordable housing as we know that the homeless problem in our country is real and that there's a significant number of families  with children who are homeless every year. In 2018, more than 50,000 families with children were homeless. And homelessness has been linked to higher rates  of medical care, more ER room usage, and more behavioral and learning problems.  There will also be negative implications. I'm not going to pretend that they don't exist. Most importantly, a small proportion of children  might not have access to new and expensive medications for cancer or possibly gene therapies. This would then disproportionately affect children with chronic conditions  and certain difficult-to-treat cancers and other disorders that already likely shorten their lifespan. Parents will also feel the effects of their autonomy being compromised.  So now let's go over a specific pediatric example of how rationing applies. Spinal muscular atrophy is a recessively inherited neurodegenerative disease, which there are four types,  with type 1 being the most common and also the most severely affected. By age six months, these infants have progressed to proximal muscle weakness,  leading to the need for respiratory support, either non-invasive or invasive with a tracheostomy. And some families choose no respiratory support at all  and instead opt for palliative and comfort care with death following. It is a tragic illness in that the mind is not impaired at all. And as such, these children are sometimes  described as locked into a failing body. Recently, a new drug was developed, which was clinically shown to improve motor function. And shocker, it is super expensive.  This slide is meant to show that there's significant variability in how SMA type 1 is managed in the US compared to internationally. Discussions about offering or needing  tracheostomy and ventilator no doubt happen at some point for these children with SMA. And this table shows that physicians from Commonwealth countries, including the UK, Australia,  and Canada, did not offer tracheostomy 80% of the time, while the United States and other countries demonstrated higher rates of offering tracheostomy.  And important to realize that offering a tracheostomy doesn't just run the risk and cost of the procedure at that time alone, but this then becomes a lifelong cost burden involving  endless specialist visits, home nursing, and home modifications that need to be made to accommodate the ventilator. This study postulated that these differences reflected  the differing attitudes of physicians based on what country they practice in, with the US physicians being more used to the US culture of care at any cost.  So there is a medication for SMA, and it was approved in the US in 2016 and in Europe the following year. Year one costs $750,000, and annually thereafter, the cost  is $375,000, with the cost of medication for 10 years running a cool $4 million. However, it's been shown to improve motor function over a six-month time frame.  But there seems to be a therapeutic window for children less than seven months of age at onset of treatment, and those not currently  being trache-vented, and that those were the children who experienced the most improvement with initiation of treatment. So, should we limit treatment to only those  that meet the therapeutic window in order to gain the most from treatment, or should we take it even a step further, and only limit therapy  to those with maybe less severe forms of SMA, assuming that they will have the most to gain from such an expensive medication? Rationing is already also occurring with use  of this medication by insurance companies, and their willingness or unwillingness to cover the medication. But perhaps with something that is so expensive,  but with so much potential, there should be possibly a larger body governing a fair allocation and coverage of this important medication.  And to take this one step further, there's a new gene therapy out recently for the treatment of SMA. It is reportedly a one-time treatment  to nearly cure the disease, and cost for one treatment is two million dollars. So, as the numbers continue to rise, you may start asking, how much is too much  to spend on a one-time treatment for one patient, when so many children don't even have appropriate preventative healthcare opportunities?  So now let's go across the pond to the UK and see how they do things there.  So during World War II, rationing became a part of the national identity of many British citizens. And this was the same time that the NHS was created.  About 20 years ago, they added the National Institute for Health and Clinical Excellence, or the NICE, which is the body that makes rationing decisions  based on the premise that the government should spend its limited resources  on treatments that do the most good for the money. NICE chairman Michael Rawlings was quoted once in response to a question about exorbitant  end-of-life ICU costs, as saying that, quote, if Britain spends a lot of money at end-of-life, we're going to have to deprive other people of cost-effective care, possibly meaning  less spending at the beginning of life, which might result in a higher infant mortality rate. 90% of the UK public supports the NHS, and it serves as a source of pride.  In the US, we have a mix of government-funded healthcare in the form of Medicare and Medicaid, and private healthcare. And then we also have those with no healthcare  or very minimal healthcare coverage, because they make too much to be eligible for government healthcare, but not enough to have a good private plan.  The table on the left here shows that in 2018, 8% of the population was without health insurance at some point during the year.  And on the right, this table shows that among children up to age 19 years, 5.5% were without health insurance that same year. So the uninsured still remain in our country,  demonstrating the deep differences between those that have and those that have not.  The UK is an economically and demographically similar nation to the US. The following are tables comparing our performance to that of the UK.  Here on the left, you can see that the US spends a lot of money on healthcare, and yet still has a low life expectancy compared to countries  clustered near the middle and top portions of this graph, including a lot of European countries. On the right, we see that the US, again, spends a lot of money, but has a high  avoidable mortality rate, while the countries in the lower portion of the graph have lower avoidable mortality with much less spending.  This graph shows that while the US spends a lot on healthcare, the actual population coverage is very poor. Other countries, again, demonstrate nearly universal  coverage of a core set of services with low healthcare spending.  And we've all seen this table before, and realized that even though we spend the most on healthcare, we have a higher infant mortality rate than many other developed nations,  and nearly double that of the UK. This graph shows that in 2017, our infant mortality rate was flanked on one side by the Slovak Republic,  and the other side by the Russian Federation.  Childhood mortality is also lower in the UK versus the US.  This graph here shows that the rate of low birth weight infants is much higher in the US compared to the UK. And here we see that although for most cancers,  it's true that the US tends to have a higher survival rate, especially breast cancer, and that's likely probably due to our willingness to try any new and expensive drug,  the ALL five year net survival rate is actually lower in the US versus the UK. This could be due to poor preventative care rates here for children, or an inability to pay  for cancer therapies for some children.  So I didn't show you all those graphs to completely depress you, but I think it makes a point that we just don't do a great job when it comes  to utilizing our immense resources to maximize the most benefit in comparison to a country similar to us. So in summary, US healthcare costs are rising exponentially,  and we need to start rationing healthcare spending so we can maximize resources for more people. Rationing currently happens here in the US,  but mostly implicit and micro-allocation of resources, and rationing happens quite successfully in other countries. If you balance the ethical principles of justice,  beneficence, and non-maleficence, as well as autonomy, rationing can be found to be ethical. And we are going to reach a point eventually  where we have no more money for other resources and we need to start thinking about rationing more seriously so we might as well start now.  Thank you. Good morning. Well, that's a very hard act to follow. When I started to prepare for this talk, I approached a number of people for help  and almost every ethicist I spoke to said,  give up on this topic. You can't win. The rationers have the higher ground. So don't even try. And what was even amazing was how angry ethicists got when I tried to tell them  that I had to argue against rationing.  So very, very interesting.  And after listening to Amena's talk, I don't think I have much of a chance here. It was a wonderful talk. Thank you so much. So I have the opposite point of view to argue.  I have no financial disclosures, but I do have a couple of things that may influence my thinking here and influence what I have to say.  One is I work in a pediatric ICU in the Bronx, New York. It has an extremely high rate of impoverishment among my patients and any systemic or systematic rationing program  that's implemented in this country will affect my patients disproportionately to other patients.  Second, there's a personal issue that I'm currently at war with the insurance industry from a family point of view. I have a family member who has an implanted spinal cord  stimulator for complex regional pain syndrome.  The stimulator is broken. It is detached from her spinal cord and is nonfunctional. Yet the insurance company that she has now  absolutely refuses to pay for the repair or removal of that. And as an intensivist, the idea of someone having a dysfunctional, broken piece of metal adjacent to a spinal cord  is a very upsetting thing. And lastly, I'd just like to say that I tend to be the attending in the ICU that the fellows don't want to present patients to,  since I'm the one who says, bring them to the unit. I'm sure there's something we can do for them.  I'll start with my conclusion, and that is in the United States of America, no child should die for lack of ICU care.  However, in the face of the discrepancy between unlimited need and unlimited resource availability, it is naive and may even be irresponsible  to say that rationing health care is unnecessary, inappropriate, or not ethical. I wish to state today that rationing decisions made for the pediatric population  and the pediatric ICU population have to be made with circumspection and caution.  And I'll just go back, because this is what I'm faced with right now in New York State, where we have a $6.1 billion budget deficit that was just announced.  Over $4 billion of that is in Medicaid spending, and that is going to affect us tremendously over the next couple of years.  And then we have our federal budget, which has just been announced, in which they're recommending a trillion dollars in cuts for Medicaid,  and significant cuts for the disproportionate share funding, which any of us who work in hospitals in underserved areas rely on constantly.  How do we strike a balance, a balance between unlimited need and limited resources, versus our duty as physicians to our patients? The Hippocratic Oath, the modern version,  states that I will apply for the benefit of the sick all measures required avoiding those twin traps of overtreatment and therapeutic nihilism.  However, it also does state that we have to realize that we're a member of a greater community and a greater society, and we do have duties to our society.  Well, rationing, as defined by Dr. Trug and the Task Force for Values, Ethics, and Rationing in Critical Care, states that there's the allocation of healthcare resources  in the face of limited availability, which necessarily means that beneficial interventions are withheld from some individuals. They even go on to define reasons for rationing,  whether due to external reasons, such as there are no MRI scanners or there are no hospital beds. Clinical guidelines, which state that in your given institution,  you may use this drug for this process, but not another drug. Or those decisions made for clinical judgment.  This is where the fellow's gonna park themself tonight so that they can take care of this patient and they will stay here. This is the patient that will leave the ICU  because of the emergency heart transplant in the middle of the night.  This differs a little bit from triage, which is the sorting and allocation of care and the sorting and allocation of treatment of patients, especially in battle or disaster,  according to a system of priorities designed to maximize the number of survivors. Well, I agree 100% with Amena. We ration every single day. In my own personal practice,  I deal on a monthly basis as chair of our local pediatric P&T committee with the issue in fliximab, where I routinely referee hot shouting battles  between the inflammatory bowel disease group of our department of gastroenterology and the department of pharmacy, who the gastroenterologist says we have to use Remicade.  The pharmacist insists that we have to use a biosimilar, which has been proven to be non-inferior. It is unbelievable how these go on.  In my hospital, I'm allowed to use intravenous acetaminophen for one day and one day only. And dexmedetomidine, which is a drug which we are all using a lot of these days  in our medical intensive care unit, is limited to 24 hours of use. And there are all the other things, just as Amena mentioned. Who comes to the ICU? Who comes to the floor?  Who stays in the ED? Who leaves the ICU to accept that heart surgery or heart transplant patient? The amount of time we spend on each patient on rounds  is a given as a decision that we make. Sending the patient out of the ICU that could benefit from one more day. And I just want to refer to you to, will not be presented here,  but we presented at PAS some work of my fellow Ezra Weinblatt, who actually looked at physician and practitioner attitudes towards patients with severe disability  and how this actually may or may not affect how we look at them as candidates for ICU admission.  I've seen health rationing from an intensive care point of view up close, and I'm not really that happy with it. I don't know if anyone here has ever been  to the Postgraduate Institute for Medical Education and Research in Chandigarh, India. It is truly one of the most highly respected hospitals and teaching institutions in India.  And it is an amazing hospital. These are photographs from the Pediatric Intensive Care Unit and the Cardiac Intensive Care Unit.  They're practicing state-of-the-art critical care medicine. It is calm, it's organized, it's functioning at a very high level. But if you go down from there to the emergency room  of that hospital, the children's hospital, what you see is bed after bed after bed of intubated children being ventilated by their parents in a very sophisticated and kind way,  much more than we could probably do with most of our high-priced ventilators. But when I ask what's going to happen to these children, I've been told that many of them  will never be admitted to the hospital. They will stay intubated until the parents are either too tired to back them or decide to take them home. And it's very sad.  But they have to make very acute, severe rationing decisions due to acute resource limitation.  And this is an excellent, excellent hospital.  So a couple of things from an ethical perspective. Well, the AAP has talked about rationing. And the AAP in 96 said the decision to forego clinical care services  based on resource limitations are generally not clinical and physicians should avoid bedside rationing. The American Medical Association in its Code of Ethics  has stated that the physician should do all he or she can for the benefit of the individual patient. But we should lend our professional expertise  to societal considerations of designing systems of care. And then they say that we should remain a patient advocate and should not make allocation decisions.  The American College of Physicians has been a little bit more deferential to the concept of rationing and has limits the extent in which the physician should narrowly focus  on their patient and should think more about societal implications and resource limitations.  The primary role as patient as though remains as patient advocate.  Well, interestingly, I will also look at Beauchamp's and Childress's principles of bioethics and maybe with a slightly different view on them.  And of course, those are respect for autonomy, beneficence, non-maleficence, and justice. Well, in regards to respect for autonomy,  a very serious issue with rationing is do we tell our patients about the rationing decisions that we're making, that we're making one decision versus another  based on the availability of our resources?  Also, we deal with that continuum of developmental continuum that occurs with children where we deal with infants who are non-autonomous  to tweens and young adolescents who are semi-autonomous and older adolescents and young adults who have become autonomous human beings with capacity.  These have to be taken into consideration. In terms of non-maleficence, certainly it's possible that bad things can happen to patients in a rationing situation.  But I think most of the argument sits in the justice realm. Rationing pediatric healthcare disproportionately affects impoverished minority,  underserved, and underrepresented patients. Medicaid covers greater than 30 million low-income children in the United States. It represents 43% of the Medicaid population.  In the Oregon Health Plan of 1994, which is generally accepted as a really excellent implementation of a healthcare rationing program in the United States,  implemented strictly because they realized they didn't have enough money. They left Medicare for the elderly alone. They left private insurance alone.  But they rationed healthcare for the poor on Medicaid. Now, that wasn't all bad. In fact, they did some really excellent things.  They provided comprehensive, high-quality prenatal care for all uninsured people. And no one in this room would argue that that would be a bad thing  and could have great, great positive implications. However, almost most complex organ transplants were not funded. And most sophisticated high-level care was also limited severely.  The money was sent where it could do the most good, definitely utilitarian. The services were revised on a year-to-year basis based on how much money was in the till.  And all decisions were discussed in open forum.  The reason that scares me a little bit is I work in a place, the Bronx, New York City, where close to 40% of children are impoverished  and 30% of families are below the poverty line. These rates are almost twice the rate for New York City as a whole and very high in comparison to the United States.  And then I'll say, is accepting rationing in other parts of the world as ethical really true? Or should we be working to expand care globally?  And certainly, as we've all heard this week at this meeting, there's enormous efforts being made by this society, by members of this society, to expand critical care services  and sophisticated medical services throughout the world. And lastly, who speaks for children? Children really are the underrepresented population.  The AARP is a very, very sophisticated lobbying organization on behalf of older adults. But in terms of children, there's the AAP. And the AAP is a professional organization  and not a lobbying group. So before we decide to pull healthcare away from children on a rationing basis, let's make sure that they are represented and advocated for adequately.  The concept of fiduciary relationship is important in the ethical approach to rationing. A fiduciary relationship is the relationship we as physicians have with our patients  based on our specialized knowledge. Our patients trust us, they're dependent on us, they rely on us, and that relationship is real. That relationship does not exist  between the people we work for. Hospitals and healthcare systems do not have a fiduciary relationship. And this is the concept of gatekeeping.  Sulmazy talked about the concept of restrictive gatekeeping, where the physician at the bedside with the patient becomes responsible for making decisions  about limiting healthcare and healthcare resources for that patient and can create great ethical conflict. Lauritsen actually proposed a somewhat more ethically palatable mode,  and that is administrative gatekeeping, in which the hospital and hospital staff system creates the rules and regulations  and decides what type of care will be offered in the system. And the physician is still permitted to be advocate for their patient to the system.  How do we decide? This is very complicated. Widely accepted evidence-based practice guidelines and decision rules are not yet available  for many, if not most, of the clinical situations we face in the United States. And these are the situations we face in the ICU.  Decision rules and scoring systems for mass casualty and events are only now in practice. And we are still not particularly good  at understanding who, what will happen to a given patient in an intensive care admission from the minute of admission or before admission.  In New York City, we've implemented something called the Pediatric Intensivist Response Team, which is under the leadership of Bruce Greenwald.  Collaborative effort between intensivists in New York City and the fire department in order to lend a physician's  voice to highly complex triage decisions in injured children. Obviously, this has some challenges to it, but at least we're in the game.  And often, in the face of undefined decision rules, ethicists have often said that first-come, first-served and lottery-based systems are ethical and appropriate.  But both of these systems can be gamed due to various power relationships. And maybe not as ethical or just as they are proposed.  So from an economic perspective, yes, healthcare in the United States is really expensive.  16.9% of the GDP.  But I just want to advocate, mention something in respect to children.  This is data from New York State Medicaid. New York State Medicaid on a per capita basis is the most expensive Medicaid system in the United States.  If you look, for all recipients overall, New York State spends 36% more than the average Medicaid expense in the United States. 60% more for the aged, 48% for the disabled,  36% for adults, but for children on the far right, only 2% more. So in New York State, the most expensive Medicaid system in the United States, it seems to me that children remain  to get the short end of the stick.  Neil Halperin and Steven Pistorius from Sloan Kettering  have looked at critical care bed use throughout the United States in various epochs. In their 2000 to 2010 paper, they talked about how over,  in the 2016 paper, talking about data from 2000 to 2010, they talked about ICU bed growth in the United States. And pediatric ICU beds and adult ICU beds  both increased in that epoch. And actually, pediatric beds grew at a faster rate than adult beds. But when they looked at the data,  they actually found that almost that entire growth in pediatric ICU beds were neonatal beds. And actually, in PICU beds, there was actually a 10%,  actually a 13% decrease in PICU beds for children above the neonatal age group than adult over that period of time. So it seems like we're almost rationing already  aspects of our care.  Argyle Wall and others, including Denise Goodman,  wrote about trends in healthcare spending for children in Medicaid with high resource use. And they found that in this group of patients who were high Medicaid money users,  only one third of children who had high amounts of costs actually went on to be chronically big spenders, and two thirds did not. So the investment of money, although expensive,  seemed to be worth it.  Children with complex medical conditions are a huge part of healthcare spending. Complex medical conditions in children are about 1% of children,  but they represent greater than 30% of healthcare costs. Yet, the availability of sophisticated, comprehensive outpatient management systems  for children with complex conditions are still a rarity. And the institution of systems of care to take care of complex kids outside of the hospital  could probably result in significant cost savings. And something I'd also like to mention, I just caught this yesterday in Ravi Garajaran's talk on outcomes of ECMO,  is that in neonates who have been on ECMO for respiratory purposes, the long-term outcomes show extraordinarily high rates of college attendance and actually health insurance  among graduates of NICUs who have actually had courses on ECMO.  And what about the healthcare spending in the United States overall? In this article by Papa Nicholas in 2018,  they realized, they state that yes, healthcare is about twice as expensive in the US as it is in other countries, high-income countries. But where do those costs actually come from?  Utilization is actually the same between us and other countries. Those costs are administrative costs,  pharmaceutical costs, and I hate to say this, but salaries. And being pediatricians, I know that we are not really big contributors of that.  And in reality, when you account for the fact that the per capita number of physicians in the United States is about half of what it is in other countries,  the salary aspect actually washes out. So it's basically administrative costs, pharmaceutical costs.  In Trug's paper from the Value of Ethics in Rationing Critical Care group, task force, he has a very nice statement, which I just wanna bring to you.  The ethical peril lies in holding the persistent view that rationing can be avoided rather than in developing strategies for allocating resources in ways that optimize medical care  while treating all patients fairly. My hope is for a fair and rational, but not rationed healthcare system for critically ill children. Yes, and just as Amena mentioned,  there are extremely expensive medications and pharmaceuticals coming down the line. But what is fascinating about them is these appear to be clinically effective.  And whether it's Spinraza for SMA or the new CF transmembrane receptor modulator Trikafta, which are both drugs of anywhere between $750,000, $250,000  per year, they have resulted in certain amounts of good effects. And as time goes on and the research pipeline continues, there will be more and better drugs.  And this agent Trikafta, which is now showing about a 10 to 15% increase in FEV1 in patients with cystic fibrosis, this could be a real, real significant agent.  Conclusions, I don't need to pick you on every block. I think regionalization can help. It's worked in neonatology. I think it's particularly for height, for complex medical issues  such as single ventricle surgery, stem cell transplant, high risk organ transplant. And as a country, we have resources that others don't have.  And we have to do the hard things in the U.S. And since we're only 30 miles from Kate Kennedy and it is the 51st anniversary of the landing on the moon,  I will just leave a quote from John Kennedy that said, it is, we want to go to the moon and do the other things. And parenthetically, maybe those other things  should be designing a rational healthcare system. And we do these things, as the quote continues, not because they're easy, but because they are hard.  And then one last comment, Hannah Wunsch, who is a health services researcher who's written both on pediatric and adult critical care medicine,  just wrote a brief article in the Blue Journal, it just appeared in pre-publication, that talked about end of life care, which many of us in the intensive care unit  is something we like to try to push out of the ICU. But patient satisfaction with end of life care in the ICU is actually extremely good.  And it's not because of the machines and the monitoring, but because we as intensivists are comfortable with complex, sophisticated illness  and the relief of symptoms for those type of illnesses. Well, I have to acknowledge a lot of people that helped me in this. I take full responsibility for any word that I said,  but I want to acknowledge Alan Fleischman, who's the chief of medical ethics for the Children's Hospital of Montefiore, my first neonatal ICU attending, when I was an intern.  Dan Notterman, who's always a great source for no-nonsense opinions, who brought me into fellowship and offered me my first job. And Tia Powell, the chief of bioethics  for Montefiore Health System, truly one of the preeminent bioethicists in the United States right now. Thank you very much.  Hey, thank you to both of you. We'll now open up for any questions from the audience.  So if I'm understanding the question and comment correctly, it's that we bring these patients into the ICUs and we do everything for them for the benefit of the patient, but are we  taking into account, oh, we do things for the benefit of the family, not necessarily for the benefit of the patient.  So that, I think, brings into question some of the issues that I'm sure adults deal with this too, but impedes.  A lot of times we have patients who have been in our ICU for a long time, very, very sick,  and for the most part, I think our team probably realizes that this is not going to end well. However, the parents have a really hard time recognizing that and accepting it.  And so it just becomes sort of this continued acceptance of every request that the parents have.  So that sort of, I think, brings up the question of, is there a non-cost sort of role to rationing as well?  So if we were to ration some of our medical resources, would it then maybe lift some of that emotional burden off of the families too?  I don't know if you have anything you want to say on that. Yes, I think that's an excellent question, and one that we're always faced with.  What are we doing for the child when we realize their trajectory is going a certain direction, and what are we doing for this family that may be insistent or persistent on various  things? I think that's very complicated.  It adds to the complexity we as pediatricians or child health care providers have to deal with, that we have this persistent dyad of patient and parent to deal with, and we have  to sort of treat both. It's hard. I don't think of that specifically as a rationing question, and I think of it more as a physician-patient  interaction question, that we have to work as hard as we can to try to get everyone on the same page using what we would call the shared decision-making model and such, but  very true. It's what we face all the time. Yes, I have a couple of, I guess you can say statements or questions, and we can see what you can do about this.  Whenever we have a discussion similar to this about ethics related to rationing, I find it difficult to accept that framework.  What I see when you put up these slides is a disparity of allocation. So how come we are paying more for less service?  We should be looking into ways of mimicking the countries that do better with less payment, as opposed to finding an ethical reason why to accept that and ration it to our least  able to speak up for themselves in society. I see the argument completely wrong. I'm not talking about futile care.  I think we can all agree that at some level, care becomes futile, and that's a different argument entirely.  So as far as your examples, for example, when you brought up the example of your patient who had trisomy and the family asked for an ethical consultation on that, let me rephrase  that. If you had the ECMO machine there, and it wasn't being used by chance, and someone did  need it, you can't make the argument, well, because you had trisomy 18, you weren't eligible for this, even though our machine right now is not being used.  Again, I'm framing this more differently than what you all have framed it as as far as being ethical. I'm framing it as an allocation issue. I'm in middle class.  I think most of the people here would consider themselves middle class. I don't have a judgment on where that money is spent, but if I have a child and he needs  a certain care, and it's being restricted because overall as a society we said we didn't want to pay for that extra equipment, I would have a real problem with that.  But yet someone who has all the money in the world and pays less taxes than I do can have  a better judgment to say, well, we're not going to allow those people to have that service because we have to limit what's available.  I see this all as an allocation problem, not as an ethical issue. Thank you. Yeah. I agree. Yeah. It's very hard to disagree with that.  I think one of the points I was trying to make was before we start limiting the healthcare  we're providing, the argument I would give, given the case I had to defend, was that there  has to be systematic analysis of how to provide care efficiently, and efficiencies could be made that could provide much more care or much better care.  And I do have to say, I put up all those slides comparing the UK and the US as obviously a pro-rationing argument.  But when you look at it a little bit closer, it's, yes, the UK does ration certain treatment services based on cost.  But that super expensive SMA medication, I looked up the UK's policy on it. They will cover it for certain children that qualify.  I think the UK does a better job of allocating their resources more widely than maybe we do. And that's why some of those numbers reflect that. So I agree.  This is also a really big component of this is resource allocation, too.  So hi, my name is Jason Werner. I'm a pediatric intensivist at St. Louis University in St. Louis, Missouri.  Dr. Kvamme, I appreciate your arguments on limited resources to pay for expensive things. But I think that argument is flawed because it's based on the assumption that the cost  of those things is fixed. It's an externality that we don't have any control over. And I'm not sure that I buy that.  There's no publicly available data as to the actual production or development costs for Spinraza.  And we have to essentially take it on faith that the manufacturer has a fair opportunity to recoup those costs.  But my suspicion is that, and I don't even know who makes it, but my suspicion is that the manufacturer doesn't have to jump through the same hoops to get a new computer that  I do, that those manufacturers probably are not as limited on how many boxes of paper clips they can buy in a quarter as we are.  And until that happens, I refuse to accept the idea that that cost is an absolute fixed value. I also think that we can probably pay for an entire year's worth of Trikafta with what  we spend on the president going golfing for one day. I believe that number is pretty publicly known.  So again, I want to echo what the gentleman says, that it's not necessarily a problem with rationing.  It's a problem with where those numbers come from and how we as a society choose to decide what we're going to pay for.  The other thing that I want to go back to, though, in terms of paying for the care of people with what we consider to be limited survivability options, let me tell you, our  unit is in the midst of dealing with a patient with a non-survivable genetic illness that  we've had for months, and it's extremely distressing for everybody that takes care of that patient because we work very, very hard.  The child is not comfortable, and we all know how it's going to end, and yet we feel compelled to continue to do things.  But in 2000, when I was an intern, there was a paper in pediatrics that surveyed 600 pediatric  cardiologists, neonatologists, and intensivists about what their choices would be if they or their partner were carrying a fetus known to have hypoplastic left heart syndrome.  And fully half of those people would elect for termination in that paper, and now our all-cause mortality for all three surgeries for hypoplastic left heart syndrome is on  the same order as the ALL numbers that you cited up there, which is a vast improvement.  So particularly in pediatrics, where our knowledge of how to care for these very difficult situations  is still evolving very, very rapidly, to throw up our hands and say, this is not a survivable problem that we know we can't fix, and therefore we're not going to try, that  we're not going to do something about that, sort of defeats the idea of how we got here in the first place. I accept the fact that this is a very, very complex problem.  I do not propose to have the answers, and I thank you both for taking a good, solid whack at it. Thank you.  I want to echo that last statement, which is Mike and Amine, your approach to this, which is obviously could be politically charged, could be emotionally charged, was remarkably  balanced, and I thank you for that. But Mike and Amine, you both work in very urban metropolitan centers that within a stone's  throw on a good day with low traffic could move a kid in your unit to another unit without  much difficulty. So one of my questions, if you wouldn't mind reflecting on, is if you opted to ration care  in whatever, for whatever reason, both of you commented on the fact that it should not be made by an individual clinician at the bedside as an individual decision, but that  being said, if that decision is made, what obligation does that clinician have to explore  the opportunities that may exist at a neighboring partner or competing hospital that's within a reasonable distance to provide options for the family that you yourself in your  unit may choose not to provide? That is a great question, and one that I have to say that I struggle with personally, where  I work for a hospital that does not want any patient that presents to it ever to leave.  And even if that means that, as we all, everyone in this room I'm sure is experiencing at this time of year, means there'll be multiple, multiple kids in your emergency room who are  on high flow or BiPAP, and they probably need, they do need ICU admission, your ICU is full, and when you present to the administration the fact that that kid may have to leave,  you get a lot of pushback. A personal story, oh no, I better not share that, but I have been, but I am required as  in my leadership role to notify the chairman of pediatrics if I cannot accept a patient from the emergency room, and it's clearly a pressure or a, you know, it's almost a brow  beating type of effect to make me sure that I will take that patient in the ICU. And it extends, you know, the ethical, you know, and the ethical aspect that even extends  even more sometimes, that you have a patient in your hospital, in your ICU that you feel may not be getting the best possible care because of the subspecialist or the surgeon  and their attention to detail, and whether that child should be better served somewhere else. That's something that I think all of us have probably struggled with at various times.  And that's the counter to that is the family that desperately wants to leave and go to another ICU because you've told them some bad news, and then you can't get their movement  approved by their insurance company. These things are, I think that's a very, these are very real issues.  And yes, the hospital has, the hospital's philosophy is if we let this patient go, they'll never come back here again.  I don't think that's as true as they say, but that's the official statement for sure. I think until, like, my hope in terms of changing how our resources are allocated, or if you  want to call it rationing or whatever, is that it would happen on a more broad global scale for all hospitals.  So until that were to happen, if there were one institution that were to offer something that maybe my institution wasn't willing to offer, I think at this current state,  my obligation and responsibility to the family from a moral standpoint would be to help them get there if I could. So until allocation is more broadly accepted.  With that, I just want to thank Mike and Amineh for elevating the discussion, not only to talk about the particular vulnerabilities in pediatric population, but also these macro  allocation decisions and our responsibilities to our larger allocation of social resources. Thank you all for coming, and please feel free to continue the conversation after.  Thank you.  That was great.

Video Summary

The video features a discussion on the topic of resource utilization and rationing in pediatric critical care. The speakers present arguments for and against rationing in healthcare, examining the ethical implications and comparing international healthcare practices. The first speaker argues that rationing is necessary to make healthcare more efficient and equitable, especially considering the rising costs of healthcare. They discuss the ethical principles of distributive justice, beneficence, non-maleficence, and autonomy, and how they can be used to justify rationing. They also provide examples of current rationing practices, such as insurance companies and physicians making decisions on resource allocation. The second speaker argues against rationing, suggesting that it is a problem of resource allocation rather than an ethical issue. They emphasize the importance of working towards a healthcare system that mimics countries with more efficient and equitable healthcare practices. They also discuss the challenges of physician-patient interactions in situations where care becomes futile. The speakers highlight the complexities of rationing and resource allocation in pediatric critical care and advocate for a fair and rational healthcare system for critically ill children.

Asset Subtitle

Pediatrics, Ethics End of Life, 2020

Asset Caption

The Society of Critical Care Medicine's Critical Care Congress features internationally renowned faculty and content sessions highlighting the most up-to-date, evidence-based developments in critical care medicine. This is a presentation from the 2020 Critical Care Congress held February 16-19, 2020, in Orlando, Florida, USA.

Learning Objectives

Review ethical bases for limiting and rationing healthcare resources
Compare international and U.S. healthcare practices
Discuss the implications of rationing or limiting care specifically to children
Delineate the international ethical standards for which limiting and rationing are acceptable

Pro: Rationing Pediatric Healthcare Outside the United States Is Common and Ethical, and the United States Should Join Them

Ahmeneh Ghavam

Con: Rationing Pediatric Healthcare Outside the United States May Be Ethical, but the United States Should Not Join Them

Henry Michael Ushay

Meta Tag

Content Type Presentation

Knowledge Area Pediatrics

Knowledge Area Ethics End of Life

Knowledge Level Intermediate

Membership Level Select

Membership Level Professional

Membership Level Associate

Tag Medical Legal Issues

Year 2020

Keywords

resource utilization

rationing

pediatric critical care

healthcare

ethical implications

beneficence

non-maleficence

autonomy

resource allocation

fair healthcare system

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