What to do When the Parents of the VAD/Transplant Candidate are High Risk? Ethics of Supporting Families Facing Structural Vulnerabilities
Samantha Anthony PhD, MSW
, Hospital for Sick Children, Toronto, ON Canada
Bioethics is a critical reflection on moral/ethical problems in healthcare settings. An ethical dilemma is defined as when healthcare providers encounter (i) conflicting values, beliefs, and goals; (ii) have conflicting obligations or responsibilities, (iii) are concerned about rights violations or persons not being respected, fairness & justice, something conflicting with professional code of ethics; and/or (iv) are unsure what, why and how to do it. Fairness is paramount in deciding who is eligible for a lifesaving organ.
Social determinants of health include: education access and quality, healthcare access and quality, economic stability, social and community context, and the neighborhood and built environment. A structural vulnerability is an individual or a population group’s condition of being at risk for negative health outcomes through their interface with socio-economic, political, and cultural hierarchies. Patients are structurally vulnerable when their location in their society’s multiple overlapping and mutually reinforcing power hierarchies and institutional and policy-level statuses constrain their ability to access health care and pursue healthy lifestyles.
There is immense pressure of best use of available organs, we must optimize graft survival and function, and it should benefit both quantity and quality of life. A patient’s psychological health and social support system are key to optimizing quality of life and maintaining medical adherence, thus psychosocial evaluation is very important to identify psychosocial risk factors and appropriately intervene to optimize psychological health. An evaluation of child and their parent and family is necessary. Psychosocial factors are not commonly used in pediatrics to determine eligibility for transplant. Transplant teams are motivated to identify psychosocial concerns early in the transplant process and address deficient resources and facilitate healthy change. However, there may be circumstances when the sum of the psychosocial risk factors is so great that a child should not be transplanted or should have transplant delayed.
Pre-transplant strategies to support families include screening for and addressing a child and family’s social needs by a social determinants of health/structural vulnerability assessment tool that includes the following domains:
- Financial security
- Risk environments
- Food access
- Social network
- Legal status
There should be open conversations about increased psychological support and help from other family members. Adequate information should be provided and understanding ensured regarding pros and cons of VAD and transplantation and the procedures and post-treatment management. Mentorship programs can be started.
Post-transplant strategies to support families include assessments of family’s readiness for discharge as a part of routine post-operative care; immediate post-transplant and follow up neuropsychological assessment; and interventions to promote early transplant mobility. Coordinated discharge teaching should be done tailored to the family’s needs. The ongoing communication between the transplant team, family and school should be monitored. Parent/family functioning should also be monitored as part of routine follow up. Use of telehealth technology can also be used as a monitoring tool.
Don’t Throw Away Your Shot: Vaccine Refusal in Pediatric Transplantation
Lara Danziger-Isakov, MD, MPH
, Children’s Hospital Medical Center, Cincinnati, OH USA
Firstly, we demonstrate the need for vaccination. Feldman et al evaluated 6,980 pediatric patients with solid organ transplant. There were 1,092 patients with 1,471 cases of RSV or vaccine preventable illness; of these, 187 cases were during transplant hospitalization, and car=se fatality rate was 1.7%/ Of the 1,257 events outside transplant hospitalization, 213 were admitted to the ICU. It was noted that through September 2020 that there was a 26% drop in DTap vaccine administration and MMR administration, and a 16% drop in polio vaccination when compared to 2019. There were around 9 million missed vaccinations in 2020, with 40% of parents confirming that their child missed vaccination due to COVID-19. There is reduced community protection for our children and communities against measles, whooping cough, and polio.
Secondly, the issues need to be framed. Medical contraindications like age or transplant urgency, fefusal, and social/logistical reasons. A 2013 survey of 195 pediatric programs with a 71% response rate revealed inconsistencies across pediatric transplantation programs regarding how parental refusal of vaccination affects listing decisions. Logistical concerns include timing, decentralized care, and clinic-related factors like vaccine availability, clinic time/room turnover, transition to telehealth/remote care, and distraction by ongoing medical issues.
Various opportunities to tackle this include:
You Are What You Eat: BMI Considerations in Pediatric Transplant and VAD Patients
- Adequate education: assess underlying reasons for refusal, address risks and benefits, and provide an individualized assessment. Practice with patience, empathy, and persistence.
- Prioritization and routinization of providing the vaccine
- Ensuring Availability
- Coordination with various apps that document vaccination schedules and statuses and innovation. These apps may not be applicable to patients with accelerated schedules, presence of any contraindications, and individuals with specific risks
- Innovation: The Updated 2019 AST ID guidelines- MMR and Varicella vaccination are generally contraindicated post-transplant but may be administered in a carefully controlled setting with appropriate education and close follow up. Outstanding questions remain regarding durability and patient selection.
Carmel Bogle, MD
, University of Maryland Medical Center, Baltimore, MD USA
The definition of obesity in pediatrics is stratified on basis of percentile, unlike adults. Class I obesity is 100-120% of 95th percentile, Class II is 121-140% of 95th percentile, and Class III is > 140% of 95th percentile. There is an increasing trend in obesity among children, and adolescents aged 2-19 years by age had worsened over the course of years (from 1960s through 2018). When adjusted with age and sex, it was noted that BMIs have increased significantly post-pandemic.
A PHTS analysis evaluated obesity and dyslipidemia to predict cardiac allograft vasculopathy and graft loss in children and adolescents post-heart transplant. They noted 10% were overweight, 11% were obese, and there was higher propensity of obesity in recipients over 10 years of age. In a survey of adult and pediatric heart, kidney, liver, and lung programs, it was noted that 59.4% pediatric heart transplant centers encountered patients with BMI> 45. 53.5% pediatric heart transplant centers noted BMI > 45 as an absolute contraindication to adult heart transplant listing.
In another analysis, Ryan et al noted that obesity class does not further stratify outcome in overweight and obese pediatric patients after heart transplantation. Patients with BMI > 85th percentile were more likely to be older, males, Black, or Hispanic with dilated cardiomyopathy, diabetic, and required MCS at both listing and transplant. Overweight and combined obese patients had lower cumulative post-transplant survival compared to normal weight patients. Pediatric patients who are obese at the time of HT and dyslipidemic at one year post-HT are at an increased risk for CAV and graft loss.
Is obesity a contraindication for VAD placement? Puri et al evaluated trends in BMI and association with outcomes in pediatric patients on continuous flow ventricular assist device support. They noted that 18% were overweight, 17% obese, BMI was increased in all categories and overweight patients carried more frequent non-VAD infections. Obese patients required longer duration on VAD support, and were less likely to be transplanted.
In another analysis by Joong et al, it was noted that 74% providers would agree to offer VAD support to an adolescent with a BMI > 35. Fitness programs are recommended to improve outcomes pre- and post-transplant. Chen et al demonstrated excellent adherence with significant improvements in cardiovascular and functional health in pediatric heart transplant recipients with a live video-supervised exercise and diet intervention is feasible.
Delays Shouldn’t Leave Me Behind: Transplantation in Patients With Neuro-Cognitive Impairment Matthew Fenton, MD, MBBS, BSc
, Great Ormond Street Hospital Children’s, London, UK
We are now in an era where early mortality post-transplant is rarer. As outcomes have improved, the utility for a broader range of conditions has increased. As survival increases, the value of treatment increases as well. However, organ availability has not kept pace with increasing demand for an effective treatment. Ethical principles in rationing donor organs include:
- Utility: Allocation should maximize the net amount of good. We should balance doing good and not doing harm; determinants will be predicted years of life and wellbeing, with social worth excluded.
- Justice: Fairness in the allocation of organ for individuals and centers; all members of the public are morally entitled to fair access of its benefits; access related to social characteristics conflicts with just principles.
- Respect for person’s autonomy: A respect for right to decide, equality of access, and when considering listing those with infectious disease this is quite important
- Rule of rescue: The human desire to help when life is in danger. Utilitarian principles can appear inhumane: rescue first, evaluate effectiveness later.
Prior to the 1990s, intellectual disability was generally regarded as a contraindication for transplant. 1995 American Society of Transplant Physicians state that intellectual disability should only be a contraindication if compliance is impaired and caregivers ae not able to compensate for this. In 1996, the first patient with Down Syndrome received an organ transplant. It is unacceptable to exclude an individual from transplant listing based on disability. Evaluation was to focus on benefit, predicted survival, compliance, and availability of support. It was noted in 2004 that only 3 patients with Down Syndrome were referred for thoracic transplant over 14 years in the UK. Per Broda et al in 2018, only 2.1% of US pediatric hearts were done on patients with chromosomal abnormalities with no difference in outcomes. Patients receiving heart transplants for inherited myopathies and DiGeorge Syndrome have similar outcomes to unaffected heart transplant recipients.
In another survey of heat, kidney, liver, and lung transplantation, Wall et al noted that there are still some programs that consider genetic disease and intellectual disability as an absolute contraindication for transplant, with pediatric centers less likely to do so compared with adult centers. Categorization in general should be avoided and focus should be on individual assessment. General practice guidelines should be formulated to aid assessment.
Blanket discrimination against people with neurocognitive impairment or genetic conditions is unethical and illegal. Patients with comorbidities should be assessed for transplant listing based on their individual circumstances. Guidelines for rare conditions help provide consistency and should be created across centers. Public engagement in driving decision making reveals that perhaps the threshold for a meaningful life is lower than the medics may think. Using a limited resource does not always have to about efficiency but can also be about equality of access to transplantation.
“The Green Revolution”: What to do When Your Teenage Patient Smokes Pot?
Robert Page, PharmD, MS
, University of Colorado School of Pharmacy, Aurora, CO USA
During the past year, marijuana and substance use has increased among people aged 12 years and older. Marijuana is legalized in many states now, but there are certain age restrictions varying per each state. Younger people are using marijuana mostly due to mental health issues, friends and peer pressure, and media and pop culture. Cannabis has certain neurological effects on teens, like abnormal stress responsivity, glial cell activation, desynchronization of PFC neuronal networks, excessive synaptic pruning, and dysregulation of monoaminergic pathway. Acute neurological effects include inaccurate perception of time and sounds; slower reaction time affecting driving and increasing injury risk; problems with memory and learning; as well as poor judgement, panic attacks, distrustful thoughts, and symptoms of psychosis. Chronic neurological effects include impaired learning, memory, and attention; increased risk of schizophrenia or other psychotic disorders, especially in vulnerable individuals; and addiction.
Various cardiovascular effects on teens include hypotension/bradycardia with higher doses, arrhythmia due to hyperadrenergic state, stroke due to decreased cerebral blood velocity, ischemia due to arterial vasospasm and tachycardia, thrombosis due to procoagulant state, and platelet activation and atherosclerosis due to oxidative stress/endothelial injury. Matta et al noted that recreational substances including cannabis were independently associated with a higher likelihood of premature and extremely premature ASCVD, and its use confers a greater magnitude of risk for premature ASCVD among women.
Therefore, a discussion of risks and potential of not being listed per center’s policy should be discussed, and a psychologist and social worker evaluation is a must. Teens are not invincible and cannabis use can have long term consequences.
When the Team is at Odds: Decision-Making Distress and Conflict Among the Advanced Heart and Lung Failure Teams Melissa Cousino, PhD
, C.S. Mott Children’s Hospital, Ann Arbor, MI USA
Interprofessional teamwork is an interpersonal process characterized by healthcare professionals from multiple disciplines with shared objectives, decision making, responsibility, and power working together to solve patient care problems. The joint commission in 2011 noted that 65% of sentinel events in cardiac operating room are due to communication failures. Transplant medicine is high-stakes and involves end-stage decision making with a lack of predictability and multiple ethical considerations, including large teams with diverse backgrounds. Communication amongst the team is extremely important. Clinician stress and burn out is highly prevalent amongst physicians and nurses.
Group dynamics that can fuel conflicts include hierarchies, trust/rapport, and preference/style. Clinician bias includes race, socioeconomic status, and education. Our goal is to intentionally cultivate and maintain strong personal relationships, reliable and open communication methods, conflict resolution strategies, and shared professional goals to succeed in our challenging work.
Various strategies to improve rapport include clinician wellness, team building, conflict resolution, co-location, communication, and education. We must evaluate the strengths and weaknesses of our teams, realize the team goal, and identify opportunities to work on these goals, along with identifying threats that are outside of our team’s control.
– Summary by Anju Bhardwaj, MD