Ethical Factors That Affect Decision-Making in Nephrology Care
Thanks to swift medical advances, the lives of many seriously ill children can be saved. Unfortunately, many treatments do not lead to cures, so survivors are often left with complex, chronic conditions, including kidney failure. Pediatric nephrologists often face life-threatening cases, and while there may be viable care options for these children, some families still choose to forgo treatment for a myriad of personal reasons.
To shed light on the ethical challenges associated with these decisions, three specialists at Children’s Mercy Kansas City shared their thoughts:
- Bradley Warady, MD, is the Division Director of Nephrology. He is also Director of the Dialysis and Transplant program and he serves as one of the PIs of CKiD, the longest-running study of chronic kidney disease (CKD) in children.
- Laurel Willig, MD, is a pediatric nephrologist and the Medical Director of the Genomic Medicine Center.
- John Lantos, MD, is the Director of Pediatric Bioethics.
Why is the issue of ethics so prominent in nephrology?
Dr. Warady: The use of chronic dialysis in young infants with severe kidney disease has created controversy for decades. Providers have asked themselves whether they should perform dialysis and transplantation on our youngest patients, those children born with kidney failure.
Dr. Lantos: Renal replacement therapy and bioethics are joined at the hip. Transplants were first performed in the 1950s, initially only with siblings and identical twins, with the knowledge that these live donor procedures could kill the donor. By the 1960s, the development of dialysis offered hope outside of transplant. Unfortunately, only six machines were available initially and there were many more patients who needed them. This led to the first debates about treatment allocation.
What’s different about ethics when it comes to pediatric patients?
Dr. Lantos: For some infants, a high degree of medical complexity makes dialysis more difficult. And the decisions about whether to offer this kind of care tends to be embedded with crucial questions of social worth and the value of life.
Of course, kids cannot make decisions for themselves, so their parents decide. Ideally, parents and healthcare providers work together to make the best decisions as advocates for the child.
We know that life expectancy is shortened for kids with kidney failure at birth, and transplants don’t last forever. If a child receives a kidney when she’s two, she can expect it to last an average of 10 years, with about a 70 percent survival rate. If this child lives well into adulthood, she will need anywhere from three to five kidneys with dialysis in between.
Dr. Warady: The complexity of caring for pediatric patients with kidney disease is greater now than it used to be. In the early days, dialysis meant high rates of death, especially for the infant with kidney failure, which made healthcare providers feel more comfortable with decisions to not even initiate dialysis in some cases. But today, we’re better at dialysis and we’re better at preventing and treating complications, so short-term survival is better. Now providers are often less comfortable with family decisions to not start dialysis.
How are outcomes factored into decisions?
Dr. Warady: Today the five-year survival of an infant who starts dialysis is about 75 percent. And yet, based on the realities of long-term dialysis, some parents don’t want to subject their child to the rigors of dialysis, even if the doctor thinks the child has a very good chance of survival.
Dr. Lantos: When an adult needs long-term dialysis, we ask them what they want to do. But with babies and young children, we can’t ask them. Nearly 15 percent of adults eventually conclude dialysis was a bad decision and want to discontinue it. When it comes to kids, we assume parents must do what’s best for their child. When a parent simply looks at five-year survival rates, dialysis usually appears to be the best decision.
Dr. Willig: As medicine advances, we are able to successfully intervene when confronted with extremely complicated medical conditions. At the same time, we are asking families to weigh the harms and benefits of more elaborate treatment plans while balancing cultural, financial and other interests.
What about quality of life for the patient?
Dr. Warady: Unfortunately, children on long-term dialysis have been a poor quality of life, worse than children with many other chronic diseases. If you ask kids undergoing dialysis, they will tell you their quality of life is poor. They either have to come to a dialysis unit and miss school 3-4 times per week while they are hooked to a machine for 3 ½ - 4 hours, or they must connect to a dialysis machine at home every night. They deal with a highly restricted diet and a lot of medications. They often become depressed by all the restrictions. Even with a transplant, when dialysis is no longer required, children deal with related issues for life because, as Dr. Lantos mentioned before, transplants don’t last forever.
Dr. Willig: Deciding on long-term dialysis can be a tough decision. Although we try to explain the process as best we can, parents cannot fully understand the demands of the routine until they are immersed in it – and it affects everyone’s quality of life. So although our goal is informed consent, we know there are limits to what parents understand up front. Even so, most people choose to start their child on dialysis when confronted with severe kidney failure.
Dr. Warady: When parents decide on long-term dialysis at home for their child, they undergo intensive training for several weeks. They learn about all of the dialysis related activities and complex medication requirements, plus the intense schedule of doctor appointments. In most cases, the burden of care means one parent cannot work, because caring for the child becomes a full-time responsibility. It’s all consuming.
How is quality of life for the family affected?
Dr. Willig: What’s unique to pediatric ethics is that we must consider the entire family’s best interests, not just the child with kidney disease, particularly if there are other siblings at home. We help the family develop a plan for dealing with the best interests of all the kids. If you don’t have unlimited time, funds and energy, this kind of long-term care can be a substantial burden for the family.
Dr. Warady: Families can become isolated from friends, because caring for a child with severe chronic kidney disease (CKD) and on dialysis can be a 24x7 job. They experience employment challenges and financial hardships. They have to learn to cope and survive while not neglecting the other kids. They feel emotional conflict about what they should do for their child and what they actually can do. We, the dialysis team, provide as much support as we can.
What role do you play in decision-making?
Dr. Warady: We become part of the families’ inner circle to help them make decisions regarding the care of their kids with complex issues. If a baby has isolated kidney failure at birth, we generally recommend dialysis. On the other hand, if other significant conditions exist, we might not recommend dialysis. In most cases, families choose dialysis.
When we ask follow-up questions later, the majority of families tell us they are content with the decision they made. Most of them say they would agree to dialysis again. But a few have told me, “If I really understood what my child would have to go through, we wouldn’t have done it.”
When you disagree with a family’s decision, what do you do?
Dr. Warady: We’ve only had a few families who chose not to pursue dialysis, and we honored their wishes, providing comfort care for the infants. When we don’t agree with the decision, the entire team involved with the family feels the emotional impact.
The more common situation is parents who want dialysis even though the care team doesn’t recommend it. We’ve all had cases in which we believed further aggressive treatment, such as the initiation of dialysis was futile but, because of parental wishes, we went forward. This puts us in an uncomfortable situation. We often share that our recommendation would be different, but most providers don’t feel comfortable pushing their own wishes or beliefs on the family.
Dr. Lantos: Our ethics committee usually gets a call when parents want to continue treatment, but doctors see no hope of recovery. It’s usually possible to prolong life, but that additional time can create a painful existence for the child. Care team members can begin to feel they’re betraying the child.
The difficult decision to withhold treatment usually occurs during a shared decision-making process between doctors and parents. Most of the time parents can accept difficult news, asking us to switch to palliative care. This process is more positive for parents, many of whom have had time to process the situation and even experience some anticipatory grieving.
Do teens pose different challenges?
Dr. Warady: In the transplant and dialysis populations, the greatest struggles occur during adolesence. Many teens don’t understand the impact of their behavior on their long-term outcome, including their quality of life. They live for today and often become depressed due to their restrictions.
At the same time, teen patients need to have a voice in the process. While not fully mature, studies suggest that they can grasp health issues almost as well as adults, if not better. As the care team, we try to foster common ground for care decisions that will benefit from patient and parent input.
What’s the link between genetic findings and ethical decisions?
Dr. Lantos: Through genetic testing, we may find something that could be slightly wrong, but we don’t know what it means today. Do families want to know about it? And what would they do with that information if they had it?
Dr. Warady: If we have genetic data on patients, but we don’t know the implications of that data, what do we do with it? Do we share it with patients and families? We are just beginning to address these issues in the CKiD study, where we’ve created a parent advisory group to help us determine approaches one might use to share genetic findings from the more than 1,000 families in the study today. We’re using their input to develop policies for ongoing research.
How have you developed a culture around ethics?
Dr. Willig: At Children’s Mercy, the ethics committee is not seen as the police, but as a partner and team member that helps us think through issues. People feel safe airing concerns about choices that are hard to talk about, like letting a child die. We talk to the ethics team for perspective, not for the answer.
What’s interesting is that ethical issues that mandate input from the ethics committee don’t come up very often because we partner so well with families. Since so many of the kids we care for are chronically ill and complex, it is part of our DNA to incorporate ethical issues into all discussions.
In 2018, Children’s Mercy conducted more than 7,000 visits and consultations with nephrology patients. The team performed thousands of peritoneal dialysis and hemodialysis treatments and performed 13 kidney transplants. In addition, Children’s Mercy is the Midwest clinical coordinating center for the National Institutes of Health-funded Chronic Kidney Disease in Children (CKiD) study, under the leadership of Dr. Warady. The nephrology division is committed to close partnerships with families and patients to ensure the best outcomes and the most ethical decisions regarding patient care.
Pediatric Bioethics Cerfiicate Course
The Children’s Mercy Bioethics Center works with clinicians and families to identify ethical dilemmas and respond to them. In addition, Children’s Mercy offers the only Pediatric Bioethics Certificate Course in the world with more than 180 certified physicians and clinicians to date. Students graduate with a core knowledge of pediatric clinical ethics, research ethics, health law, equity and policy, focusing exclusively on pediatrics.
Children’s Mercy Kansas City is ranked as one of “America's Best Children's Hospitals” in nine specialties rated by U.S. News & World Report and has received MagnetTM recognition for excellence in nursing services five consecutive times. With 386 licensed beds and a medical staff of more than 750 pediatric subspecialists, we care for children from all 50 states and from around the world. In addition, our leadership in pediatric genomic medicine and individualized pediatric therapeutics is driving research and innovation in neonatology, nephrology, endocrinology, gastroenterology, neurology, heart, cancer and other subspecialties to transform outcomes for children. Children’s Mercy also is nationally recognized for innovation in psychosocial care and creating a family-centered environment focused on the unique needs of hospitalized children and their families. Our love for children powers everything we do, inspiring our research, innovations and our everyday care. Because love has no limits. And with it, neither do we.