Complex Fetal Diagnoses: Evolving Clinical and Ethical Considerations

Transcript

• 00:00I would like to, address
• 00:02our wonderful speaker tonight, doctor
• 00:03Cortezzo.
• 00:05So, Donna Maria Cortezzo is
• 00:06a neonatologist
• 00:08and hospice and palliative,
• 00:10medicine physician and the neonatal
• 00:12lead for fetal care at
• 00:14Connecticut Children's,
• 00:15who has an appointment as
• 00:16an associate professor of pediatrics
• 00:18at the University of Connecticut
• 00:19School of Medicine.
• 00:21She works primarily in the
• 00:22level four NICU and fetal
• 00:24care center with her clinical
• 00:25interests spanning fetuses and neonates
• 00:28with multiple congenital anomalies,
• 00:30complex diagnoses,
• 00:31congenital diaphragmatic hernias, complex airways,
• 00:34neonates requiring surgical intervention,
• 00:37ECMO, neonatal pain management, and
• 00:39neonatal perinatal palliative care. So
• 00:42quite intense and quite expansive.
• 00:45She counsels families with various
• 00:46complex prenatal diagnoses and partners
• 00:48with them to create personalized
• 00:50birth plans and care strategies.
• 00:52Her research focuses on improving
• 00:53outcomes for neonates with complex
• 00:55diagnoses,
• 00:56neonatal and perinatal palliative care,
• 00:58neonatal pain management,
• 01:00bereaved parent experiences, and communication
• 01:02and counseling as well as
• 01:03shared decision making. And tonight,
• 01:05she's going to be talking
• 01:06to us about some of
• 01:06the evolving clinical and ethical
• 01:08considerations
• 01:09in complex fetal diagnosis
• 01:11diagnoses. So thank you so
• 01:12much, doctor Corteza. We really
• 01:14appreciate your coming here, and
• 01:15and we're looking forward very
• 01:17much to hearing your talk.
• 01:23Thank you, Sarah, for that
• 01:24wonderful introduction.
• 01:26This evening, I will be
• 01:27using the example of fetal
• 01:28kidney failure to highlight the
• 01:29ethical considerations and the complexity
• 01:32of care options and counseling
• 01:33after a serious fetal diagnosis
• 01:35is made.
• 01:36I have nothing to disclose.
• 01:39I will only begin to
• 01:40highlight the ethical considerations surrounding
• 01:42the treatment options and care
• 01:43of fetuses and neonates with
• 01:44complex diagnoses.
• 01:46With innovative fetal and neonatal
• 01:48interventions, we have the ability
• 01:49to potentially alter what ones
• 01:50were considered lethal diagnoses to
• 01:52complex chronic diseases.
• 01:55With this, though, it's important
• 01:56to consider the ethical implications
• 01:57for the fetus,
• 01:58neonate, pregnant individual family, and
• 02:01society.
• 02:02It's also important to recognize
• 02:04the constraints on the availability
• 02:05of some of the certain
• 02:06care options.
• 02:08Counseling involves complex discussions and
• 02:10a shared decision making approach
• 02:12to really help determine the
• 02:13most appropriate treatment path and
• 02:15medical care for the family.
• 02:17In this context, I'll also
• 02:19explain the importance of palliative
• 02:20care for families facing a
• 02:21complex fetal diagnosis.
• 02:24That's a lot to touch
• 02:24upon in a short period
• 02:25of time, but I hope
• 02:26it'll lead to a fruitful
• 02:27discussion.
• 02:30While I can talk for
• 02:31hours about the pathophysiology
• 02:32and management of fetal kidney
• 02:34failure, I won't.
• 02:35The details of the specific
• 02:37diagnosis is not the focus
• 02:38of the talk. I will
• 02:39give some of the basics
• 02:41so to give some context
• 02:42for this evening's discussion.
• 02:45Fetal kidney failure can result
• 02:47from several diagnoses that ultimately
• 02:49lead to nonfunctioning kidneys and
• 02:51an absence of amniotic fluid
• 02:53or anhydramnios
• 02:54prior to twenty two weeks
• 02:56gestation.
• 02:57The most common diagnoses are
• 02:58bilateral renal agenesis or complete
• 03:00absence of kidneys,
• 03:01bilateral multicystic dysplastic kidneys, and
• 03:04severe lower urinary tract obstructions.
• 03:07After sixteen to eighteen weeks,
• 03:09the fetal kidneys are really
• 03:11responsible for making amniotic fluid.
• 03:13Anhydramnios
• 03:14after that point can be
• 03:16indicative of fetal kidney failure,
• 03:17something we don't have a
• 03:18cure for.
• 03:20Also, amniotic fluid
• 03:22is critical
• 03:24from sixteen through at least
• 03:25twenty six weeks for a
• 03:26lung growth and development.
• 03:28With out it, the lungs
• 03:29may not develop enough to
• 03:32function or effectively breathe after
• 03:33delivery.
• 03:35These diagnoses have historically been
• 03:37considered lethal.
• 03:39In the seventies, there was
• 03:40report of a monozygotic
• 03:42twin with no kidneys who
• 03:43had normal lungs but died
• 03:45at several days due to
• 03:46kidney failure.
• 03:48Monozygotic
• 03:49twins are a unique type
• 03:50of twins that share amniotic
• 03:52sac and amniotic fluid.
• 03:54Presumably, the effects of fluid
• 03:56from the twin who had
• 03:57functioning kidneys surrounding the twin
• 03:59with no kidneys promoted lung
• 04:00development in that child.
• 04:03Subsequent reports of other monozygotic
• 04:05twins with fetal kidney failure
• 04:07surviving the neonatal
• 04:08period really challenged the designation
• 04:10of these diagnoses
• 04:11as lethal and led to
• 04:13in utero
• 04:14interventions with subsequent attempts at
• 04:16neonatal treatment, including dialysis.
• 04:20Some centers are offering in
• 04:22utero interventions to restore fluid
• 04:24around the fetus.
• 04:25This picture shows a subcutaneous
• 04:27port in a pregnant individual
• 04:29used to instill fluid around
• 04:30the fetus multiple times throughout
• 04:31the pregnancy.
• 04:33This does not impact the
• 04:34kidney function.
• 04:36The hope, though, is to
• 04:37promote lung growth and development.
• 04:39Without in utero interventions, a
• 04:41neonate will live hours at
• 04:43most. With in utero interventions
• 04:45and a comfort measures approach
• 04:46after delivery, a neonate will
• 04:48live weeks at most.
• 04:49And with invasive in utero
• 04:51and neonatal interventions, if the
• 04:53neonate is a pulmonary survivor,
• 04:55they are expected to have
• 04:56neonatal kidney failure and require
• 04:59dialysis and, ultimately,
• 05:00kidney transplant for long term
• 05:02survival.
• 05:04In one study of a
• 05:05hundred and four pregnancies
• 05:06of the hundred live born,
• 05:08ninety three survived the delivery
• 05:10room,
• 05:11and fifty three per of
• 05:12those were pulmonary survivors.
• 05:15Forty percent survived a hospital
• 05:16discharge,
• 05:17and fifty seven percent of
• 05:19those neonates were ultimately
• 05:20transplanted.
• 05:21For survivors, the care is
• 05:24incredibly complex and lifelong.
• 05:27Twenty percent have developmental delays,
• 05:29and seventy three percent have
• 05:31serious comorbidities.
• 05:33A significant number die prior
• 05:35to transplants, and transplants do
• 05:37not last a lifetime.
• 05:39So while interventions
• 05:40can be effective at prolonging
• 05:42life, morbidity and mortality remains
• 05:45high.
• 05:46Survivors will have prolonged hospital
• 05:47stays, multiple complications, and lifelong
• 05:50complex care.
• 05:53This slide highlights perspectives of
• 05:55twenty seven parents on the
• 05:57impact of caring for children
• 05:58with chronic kidney disease.
• 06:00Themes identified in the study
• 06:02included loss of freedom and
• 06:03control, really having to prioritize
• 06:05the care of their child,
• 06:07the burden of sole responsibility
• 06:09with the inability to rely
• 06:10on others,
• 06:12adapting for survival, having to
• 06:14rechannel resources to meet the
• 06:15basic needs of the family,
• 06:17instability
• 06:18of circumstances,
• 06:19depleted capacity to work, unpredictability
• 06:22of the child's health, burden
• 06:24of travel related costs, imposition
• 06:26of debt, and domestic upheaval,
• 06:29and struggle in really seeking
• 06:30support
• 06:31falling through the cracks with
• 06:32unmet medical and informational needs.
• 06:35When making prenatal decisions about
• 06:37interventions, families try to begin
• 06:39if that baby survives, what
• 06:41survival means for that child
• 06:42and that family.
• 06:45Taking a step back, each
• 06:46year in the United States,
• 06:47over a hundred thousand individuals
• 06:49have a pregnancy complicated by
• 06:51a fetus with severe abnormalities,
• 06:53and greater than five hundred
• 06:54thousand neonates are born prematurely
• 06:55or with severe congenital malformations.
• 06:58Twenty to forty percent of
• 07:00pregnant individuals
• 07:01continue a pregnancy
• 07:03with a life limiting or
• 07:04complex fetal diagnosis.
• 07:06With any complex fetal diagnosis,
• 07:08including fetal kidney failure, it
• 07:10truly is a care journey.
• 07:12Multiple points along this journey
• 07:14involve decisions about care options.
• 07:17Immediately after diagnosis during the
• 07:19pregnancy, appropriate care options may
• 07:20include abortion,
• 07:22fetal interventions,
• 07:23hospice and palliative care, and
• 07:25neonatal interventions with a goal
• 07:27of a survivor who will
• 07:28require complex chronic care.
• 07:31When thinking about the treatment
• 07:33options, outcomes, and care at
• 07:34each phase in the journey,
• 07:36it's really important to flex
• 07:37down the implications for the
• 07:38fetus, neonate, pregnant individual, family,
• 07:40and society.
• 07:43With fetal interventions,
• 07:45the neonate will may have
• 07:46reduced mortality.
• 07:48This, though, can be at
• 07:49the expense of prematurity where
• 07:51there's additional morbidities
• 07:52and limits to the interventions
• 07:54that can be offered. In
• 07:55other words, we may create
• 07:57a pulmonary survivor who will
• 07:58die of kidney failure if
• 07:59they are too small for
• 08:00dialysis.
• 08:02To survive, the neonate will
• 08:03require multiple hospitalizations,
• 08:06require multiple surgeries,
• 08:07organ transplant, and experience life
• 08:09with a complex chronic illness.
• 08:11At times, they will be
• 08:12in pain and treatments may
• 08:14fail.
• 08:15The relative risks and benefits
• 08:17are really uncertain as morbidity,
• 08:19infection,
• 08:20wound healing, feeding intolerance, failure
• 08:22of treatments, stroke related to
• 08:25neonatal dialysis, and the multiple
• 08:27interventions necessary remains high.
• 08:29Limited studies suggest that they
• 08:32may have some degree
• 08:33of impaired quality of life.
• 08:36On the other hand, with
• 08:37abortion or comfort measures, there
• 08:38is no expected chance of
• 08:40survival. This, though, may mean
• 08:41they're not going to experience
• 08:42suffering or an unacceptable quality
• 08:44of life.
• 08:47With fetal interventions, the pregnant
• 08:49individual will expose themselves to
• 08:50invasive procedures with no medical
• 08:52benefit to themselves,
• 08:53will have lost reproductive potential
• 08:55for a fetus that may
• 08:56or may not survive,
• 08:58and the interventions could lead
• 09:00to complications.
• 09:01The entire family must be
• 09:03considered as a pregnant individual
• 09:05and neonate will be hospitalized
• 09:06for prolonged periods of time.
• 09:08Afterwards,
• 09:09parents often become full time
• 09:11caregivers. There's increased expenses, and
• 09:13the families may need to
• 09:14relocate.
• 09:16Parents may rule view their
• 09:17roles as parents and spouses
• 09:19differently,
• 09:20and children and siblings will
• 09:21have altered childhood experiences.
• 09:24Some studies show the positive
• 09:26impact, such as redefining values
• 09:28and learning about compassion,
• 09:30while others show a negative
• 09:31impact such as siblings feeling
• 09:33neglected.
• 09:34Parents, while thankful for their
• 09:36child, may feel guilt when
• 09:37their child is in pain
• 09:39or has a complication and
• 09:40that they cannot focus equally
• 09:42on family members.
• 09:43There can be strained relationships
• 09:45with varying opinions on quality
• 09:47of life or the best
• 09:48care path for that child.
• 09:50Without interventions, though, the family
• 09:52will be left with incorporating
• 09:53the memory of as opposed
• 09:54to the physical child into
• 09:56their family unit. They may
• 09:57feel comfort in having control,
• 10:00peace in protecting their child
• 10:01from suffering,
• 10:02pressure to attempt interventions with
• 10:05uncertain benefits at a a
• 10:06high cost to the family
• 10:07or guilt for not exhausting
• 10:09all options to try and
• 10:10save their baby despite those
• 10:12global costs.
• 10:15There are also societal implications
• 10:16to consider.
• 10:17While variable,
• 10:19pediatric
• 10:20outpatient dialysis and home care
• 10:22can cost upwards of two
• 10:23hundred thousand dollars a year
• 10:25once home, three hundred thousand
• 10:26dollars for the year of
• 10:27kidney transplant, and seventy five
• 10:29thousand dollars a year for
• 10:30follow-up.
• 10:31That does not include the
• 10:32fetal or neonatal interventions, lost
• 10:35parental wages, or ancillary costs.
• 10:38The global economic costs are
• 10:40high and shared by the
• 10:41family, institution, and society.
• 10:45In addition, in times of
• 10:46unprecedented
• 10:47shortages of medical resources,
• 10:49space,
• 10:50medications, organs, subspecialists,
• 10:53health, home health, staff. These
• 10:55interventions may burden an already
• 10:57strained medical system.
• 10:59At times, the individual but
• 11:01at the same time, the
• 11:02hospitals and the individual providers
• 11:04may gain notoriety from innovation.
• 11:06Without interventions, the medical community
• 11:08will really lose opportunities to
• 11:10change disease trajectories and gain
• 11:12experience with innovative therapies.
• 11:15With either path, providers can
• 11:16have moral distress if they
• 11:18feel they're being asked to
• 11:19provide care that they feel
• 11:20is causing more harm than
• 11:21good for that child or
• 11:22family.
• 11:25Now that we've considered the
• 11:26various implications
• 11:28for the options in general,
• 11:30ethical criteria for fetal interventions
• 11:32include that that the intervention
• 11:34should be expected to be
• 11:35lifesaving
• 11:36or prevent serious disease.
• 11:37They should be carried out
• 11:39in a way that minimizes
• 11:40risk of fetal death or
• 11:41morbidity,
• 11:42and the risk to the
• 11:43present individual should be low.
• 11:46With novel fetal and neonatal
• 11:47interventions, the lines between research,
• 11:49innovation, and ultimately routine care
• 11:51are not always distinct.
• 11:53Fetal kidney failure is a
• 11:55rare condition that no center
• 11:56sees in large volumes.
• 11:59Invasive interventions are not routine
• 12:02care and the standard of
• 12:03care. So the role of
• 12:04serial amnion fusions in terms
• 12:05of long term survival remains
• 12:07at best unclear.
• 12:09More importantly, it does not
• 12:11preclude
• 12:11the need for kidney replacement
• 12:13therapy and ultimately kidney transplant.
• 12:16Most centers do not offer
• 12:17interventions.
• 12:19Some offer interventions routinely, some
• 12:21only when savvy families request
• 12:22it, and some as parts
• 12:24of research protocols.
• 12:26This can lead to variable
• 12:28oversight from ethics committees and
• 12:30IRBs and asymmetric collection and
• 12:32publications of outcomes data.
• 12:34Some families are willing to
• 12:36take on this risk and
• 12:37are accepting of those blurred
• 12:38lines between research innovation
• 12:41and routine care, though, because
• 12:42the alternative is death.
• 12:46Specific to fetal interventions, is
• 12:48the patient the pregnant individual,
• 12:49the fetus, or both?
• 12:51Who takes priority when there's
• 12:53competing interests?
• 12:54While the interests of each
• 12:56are interdependent, they may not
• 12:58always be aligned.
• 12:59Historically, there has been one
• 13:01patient, the pregnant patient.
• 13:03Recently, though, when individuals
• 13:05seek invasive fetal therapies, some
• 13:07have moved beyond the absolute
• 13:09risk to the pregnant individual
• 13:10to consider the overall risk
• 13:12benefit analysis.
• 13:14Each component of the dyad
• 13:15has different risks and benefits
• 13:17to consider not only in
• 13:18isolation, but also for the
• 13:20family and society.
• 13:22Beneficence, autonomy, and nonmaleficence
• 13:24are determined on a case
• 13:25by case basis from the
• 13:26collective information available and that
• 13:28overall risk benefit ratio.
• 13:33After birth, when we think
• 13:34about critical decision making for
• 13:36the neonate, the IPO framework
• 13:38best described by Mark can
• 13:39be utilized.
• 13:41Based on the anticipated harm
• 13:42and benefit, a treatment can
• 13:44be classified as ethically impermissible,
• 13:46permissible, or obligatory.
• 13:48The challenging part for providers,
• 13:50though, is deciding where a
• 13:51treatment should be located on
• 13:52that spectrum.
• 13:53This is determined by the
• 13:54prognosis with and without treatment,
• 13:57the feasibility of providing the
• 13:58treatment, and the consideration of
• 14:00all relevant rights and obligations.
• 14:03Given the potential for neonatal
• 14:05dialysis to increase survival,
• 14:07if survival is the desired
• 14:09outcome, it is ethically permissible.
• 14:12Ethically permissible treatment should be
• 14:14explained so that parents can
• 14:15choose from the options.
• 14:17Within that zone, a treatment
• 14:19may be inadvisable or advisable,
• 14:21but parents can accept or
• 14:22forego that recommendation.
• 14:25Some, for example, may feel
• 14:26outcomes related to dialysis are
• 14:27good enough,
• 14:28especially if the alternative is
• 14:30death to strongly recommend it.
• 14:33At the same time, the
• 14:34burdens of therapy or chance
• 14:35of a poor outcome are
• 14:37high enough that treatments are
• 14:38not obligatory of the standard
• 14:39of care, and some providers
• 14:40recommend against it.
• 14:42Families should not feel obligated
• 14:44to pursue or forego recommendations.
• 14:48When fetal or neonatal interventions
• 14:50are offered, there are many
• 14:51factors that drive decision makings
• 14:53for families and providers.
• 14:55Each pose their own ethical
• 14:57challenges. There are those blurred
• 14:58lines between the pregnant individual
• 15:00fetal and neonatal decision making
• 15:02with often competing interests.
• 15:04After delivery, we as providers
• 15:06must balance the goals of
• 15:07the parents with the best
• 15:08interest of the neonate.
• 15:10We also have to think
• 15:11about resource allocations,
• 15:12access to interventions, and the
• 15:14support necessary for lifelong complex
• 15:17care.
• 15:18This is in the context
• 15:19of variable views about the
• 15:21treatment paths and data on
• 15:22survival,
• 15:23morbidity, and quality of life.
• 15:26The downstream effects of the
• 15:27decision to pursue abortion, comfort
• 15:29measures, or interventions really transcends
• 15:32beyond the pregnancy
• 15:33dyad to the fetus, neonate,
• 15:35pregnant individual, family, and society
• 15:37as a whole.
• 15:39We also have to consider
• 15:41if all pregnant individuals,
• 15:43neonates, and children have access
• 15:45to comparable and equal treatment
• 15:47if there's justice.
• 15:49Ideally, families or individuals and
• 15:51providers use the shared decision
• 15:53making approach to really help
• 15:54determine the most appropriate treatment
• 15:56path. There are times, though,
• 15:58when external factors such as
• 16:00regional resources, institutional policies, and
• 16:02legislation
• 16:03may limit the options available
• 16:05for individuals or families so
• 16:06that they aren't no longer
• 16:08feasible or for all intents
• 16:09and purposes aren't really options.
• 16:12One external factor is geographic
• 16:14location. It's important for providers
• 16:16to know where the various
• 16:17types of care and interventions
• 16:19available are located in relation
• 16:20to where an individual lives
• 16:22as that may impact whether
• 16:23certain types of care are
• 16:24realistically an option for them.
• 16:27In twenty twenty three, over
• 16:29a hundred and sixty three
• 16:30thousand abortions were provided to
• 16:31patients traveling out of state
• 16:33largely due to bans.
• 16:35This slide demonstrates the percentage
• 16:37of abortions provided to out
• 16:39of state patients in each
• 16:40state.
• 16:41In New Mexico, for example,
• 16:43over sixty percent of abortions
• 16:45were provided to out of
• 16:46state patients.
• 16:47This percentage was much lower
• 16:49in Connecticut presumably because the
• 16:51surrounding states don't have restrictive
• 16:52bans.
• 16:53The average distance overall for
• 16:56to travel for abortion related
• 16:57health care has increased approximately
• 16:59a hundred miles since the
• 17:00Dobbs ruling.
• 17:02Abortion may only be an
• 17:03option for individuals who are
• 17:04able to travel significant distance,
• 17:06including crossing several states.
• 17:10For those seeking further comprehensive
• 17:12counseling evaluation and interventions after
• 17:14a fetal diagnosis, we have
• 17:15seen the development of more
• 17:17fetal care centers throughout the
• 17:18country.
• 17:19Based on the NAFT NET
• 17:20website, there are forty six
• 17:22medical centers in the United
• 17:23States that offer advanced fetal
• 17:25therapeutic procedures with their locations
• 17:27displayed on the slide.
• 17:29The centers tend to be
• 17:30concentrated in certain areas of
• 17:32the country with no centers
• 17:33designated within large geographic areas.
• 17:37They are located in just
• 17:38twenty two states and thirty
• 17:40seven cities.
• 17:41Only a few of these
• 17:42offer interventions for fetal kidney
• 17:44failure.
• 17:45Individuals may have to travel
• 17:46significant distance in order to
• 17:48receive an initial evaluation and
• 17:50then potentially have the ability
• 17:51to relocate
• 17:52for the remainder of the
• 17:53pregnancy and afterwards to receive
• 17:55these interventions.
• 17:58What about patients who wish
• 17:59to continue the pregnancy with
• 18:01palliative and hospice care?
• 18:03Variations in accesses services offered
• 18:05and financial sustainability have been
• 18:07well described.
• 18:09This slide, while not reflective
• 18:10of all of the programs
• 18:11in the country, shows data
• 18:12from the twenty eighteen eighteen
• 18:13National Palliative Care Registry.
• 18:16There were no participating pediatric
• 18:18palliative care programs in twenty
• 18:19two states.
• 18:21Perinatal hospice dot org currently
• 18:24lists over two hundred and
• 18:25seventy programs in forty eight
• 18:26states.
• 18:27However, the types of diagnoses
• 18:29seen, care models, training of
• 18:31team members, and continuity of
• 18:32care is really variable between
• 18:34programs.
• 18:35Throughout Connecticut, we have a
• 18:37couple of perinatal palliative care
• 18:39programs,
• 18:40varying degrees of inpatient pediatric
• 18:42palliative care services, and limited
• 18:44outpatient and home services.
• 18:46This impacts not only the
• 18:48availability of hospice and palliative
• 18:49care, but also the services
• 18:51provided and the experiences that
• 18:52families have.
• 18:55Those who seek invasive interventions
• 18:57will require subspecialty care to
• 18:59meet their child's complex medical
• 19:01needs.
• 19:02Thirty nine million children reside
• 19:04more than eighty miles from
• 19:05subspecialists
• 19:06at ratios as low as
• 19:07one physician per hundred thousand
• 19:09children.
• 19:10To better understand what that
• 19:11mean mean, I went to
• 19:12the ABP website and looked
• 19:14up information for pediatric nephrologist.
• 19:17The mean driving distance to
• 19:19a pediatric nephrologist is twenty
• 19:20nine point four miles.
• 19:22There's great geographic variability. Again,
• 19:24meaning large regions do not
• 19:26have coverage within driving distance.
• 19:28Over twenty percent of children
• 19:30live greater than forty miles
• 19:31from a nephrologist.
• 19:33While these numbers are worrisome
• 19:34and may limit the options
• 19:36available, it may be even
• 19:37worse than the map suggests
• 19:38because neonatal dialysis
• 19:40is very specialized, and not
• 19:41every center with a pediatric
• 19:43nephrologist is really equipped to
• 19:44provide the complex pre and
• 19:45postnatal care or offer dialysis.
• 19:50These geographic constraints lead to
• 19:52injustice when distance to care
• 19:54means inadequate or nonexistent care.
• 19:56Autonomy can be challenged if
• 19:58a patient cannot get the
• 19:59care that they desire, and,
• 20:00resultantly,
• 20:01nonmalevolence
• 20:02comes into play because the
• 20:03system fails to prevent harm.
• 20:07Irrespective of the geographic proximity
• 20:09to care options, providers should
• 20:10be aware of the economic
• 20:12implications and how that may
• 20:13impact the feasibility of certain
• 20:15care paths for patients.
• 20:18If they have physical access
• 20:20to care, there still may
• 20:21be financial barriers.
• 20:23These barriers are true for
• 20:24all of the care options.
• 20:26With increased distance to abortion
• 20:28services and variable insurance coverage,
• 20:30individuals may not be able
• 20:31to afford taking time off
• 20:33work, travel expenses, or the
• 20:35procedures themselves.
• 20:37With fetal interventions,
• 20:38those same financial considerations are
• 20:40applicable.
• 20:42In addition, individuals may need
• 20:43to factor in if they
• 20:44can relocate and what that
• 20:45means for their job or
• 20:46their other children.
• 20:48With hospice, they have to
• 20:49consider
• 20:50the financial resources to hire
• 20:52private help with a scarcity
• 20:53of home health resources and
• 20:54whether insurance will cover all
• 20:56of the necessary care.
• 20:58With invasive interventions and complex
• 21:00chronic care, financial constraints really
• 21:02come into play most often.
• 21:03The anticipated
• 21:04hospital stays long and the
• 21:06care needs are high and
• 21:07often lifelong.
• 21:10We can expand a bit
• 21:11more on the financial implications
• 21:12of home dialysis.
• 21:15A group interviewed primary caregivers
• 21:17of children receiving dialysis at
• 21:18three centers in the United
• 21:19States.
• 21:21This slide has themes from
• 21:22quotes of the financial impact.
• 21:24Parents note the impact of
• 21:26lost wages,
• 21:27having difficulty paying for other
• 21:29necessities, such as the special
• 21:30groceries for their child's dietary
• 21:32needs, sibling care, car insurance,
• 21:34and the impact of visits
• 21:36on their job and monthly
• 21:37budget.
• 21:38There are many outpatient visits,
• 21:40and every time the child
• 21:41has a fever, they have
• 21:42to be seen urgently, which
• 21:43means time off of work
• 21:44and co pay.
• 21:46Parking can be twenty dollars
• 21:48a visit, more if they
• 21:49have to leave to go
• 21:49to work and return afterwards
• 21:51to pick up their child.
• 21:53One parent even noted having
• 21:54to choose between paying the
• 21:55medical bills or their mortgage,
• 21:57electricity, and gas for transportation
• 21:59to and from appointments.
• 22:01Those who had insurance,
• 22:03especially private insurance, noted that
• 22:05there are huge gaps in
• 22:06coverage.
• 22:07While we don't like to
• 22:08think of costs, families have
• 22:10to consider the financial burden
• 22:11for their entire family. And
• 22:13if the ancillary costs associated
• 22:14with any care path, especially
• 22:16invasive interventions,
• 22:18is sustainable for many years.
• 22:22Economic constraints can lead to
• 22:23injustice if patients with fewer
• 22:25resources do not have the
• 22:26same care options as those
• 22:28with greater resources, really perpetuating
• 22:30the resultant social determinants of
• 22:32health.
• 22:33If a family
• 22:34of a neonate with kidney
• 22:35failure does not have the
• 22:37resources to afford home dialysis,
• 22:39the injustice challenges the family's
• 22:40autonomy and can cause moral
• 22:42distress and harm.
• 22:45Even if geographic and financial
• 22:47constraints didn't exist, there's variation
• 22:49in the ways patients are
• 22:50counseled that can limit the
• 22:52options they're made aware of,
• 22:53offered, or choose.
• 22:56Multiple factors impact how providers
• 22:57counsel patients and the treatments
• 22:59that they offer.
• 23:00At times, it can be
• 23:01because of a lack of
• 23:02knowledge of treatments or interventions,
• 23:03and at times, it's because
• 23:05of bias.
• 23:06Irrespective of the reason, the
• 23:08manner in which we counsel
• 23:09families
• 23:10impacts the options available to
• 23:11them and the choices they
• 23:12make about those available options.
• 23:16Twelve hundred pediatric surgeons, neonatologists,
• 23:19and maternal fetal medicine specialists
• 23:20were asked if they would
• 23:21recommend fetal surgery to save
• 23:23the life of a fetus
• 23:24who would otherwise die if
• 23:26survival would result in a
• 23:27child living with what they
• 23:28term severe disabilities.
• 23:30This slide has the responses
• 23:31broken down by subspecialists.
• 23:33On the first graph, overall,
• 23:36nineteen percent strongly agreed, fifty
• 23:39nine percent disagreed,
• 23:40twenty one percent agreed, and
• 23:42one percent strongly agreed that
• 23:44they would recommend surgery under
• 23:46these circumstances.
• 23:48Between seventeen to thirty percent
• 23:50displayed by subspecialty on the
• 23:51second graph felt that abortion
• 23:53is morally wrong and would
• 23:54not offer it.
• 23:56This is consistent
• 23:57with other studies that show
• 23:58variability
• 23:59in discussing the various options,
• 24:01abortion, invasive interventions, and comfort
• 24:03measures with varying fetal diagnoses.
• 24:08A study of pediatric nephrologist
• 24:10intensivists
• 24:11and neonatologists
• 24:12explore decision making for neonates
• 24:14with end stage kidney disease.
• 24:16With isolated end stage kidney
• 24:18disease, the first graph,
• 24:20thirty eight to fifty two
• 24:21percent would offer kidney replacement
• 24:23therapy,
• 24:24and forty eight to sixty
• 24:26two percent would propose what
• 24:27they termed palliative care, a
• 24:28comfort measures only approach to
• 24:30care.
• 24:31In the setting of pulmonary
• 24:32hypoplasia to any degree, the
• 24:34second graph, far fewer would
• 24:36offer kidney replacement therapy, and
• 24:38the majority, but not all,
• 24:39would propose a comfort measures
• 24:40only approach to care.
• 24:44Similarly, two international surveys showed
• 24:46that not all nephrologists,
• 24:48forty one and thirty percent
• 24:49respectively,
• 24:50would offer kidney replacement therapy
• 24:52to all neonates less than
• 24:53one month of age. And
• 24:55at the same time, roughly
• 24:56a quarter felt it's never
• 24:58acceptable for parents to refuse
• 25:00kidney replacement therapies for neonates
• 25:02less than one month of
• 25:02age. That dialysis is obligatory.
• 25:06In the study where nineteen
• 25:08percent felt it's never acceptable
• 25:09for parents to refuse kidney
• 25:10replacement therapy,
• 25:12Fifty percent said that it's
• 25:13usually acceptable for them to
• 25:14refuse it, that it's not
• 25:16obligatory.
• 25:18Collectively, these studies suggest that
• 25:19depending on the views of
• 25:21the individual providing the counseling,
• 25:23not all families are made
• 25:24aware of all acceptable treatment
• 25:26options, or at the very
• 25:27least, the information is presented
• 25:29differently based on the views
• 25:30of the providers.
• 25:33When an individual
• 25:34providers apply their own beliefs,
• 25:36views, and values and preferences
• 25:38to the bias in
• 25:39counseling and care that they
• 25:40provide, they interfere with autonomy
• 25:42and ultimately the patient provider
• 25:44relationship.
• 25:47Beyond individual provider factors, there
• 25:49may be institutional constraints
• 25:51on the prenatal and postnatal
• 25:53options available.
• 25:56This may be due to
• 25:57the capability
• 25:58of or resources at certain
• 25:59hospitals, level of care they
• 26:01provide, or institutional policies really
• 26:03related into intra institutional variability.
• 26:06Abortion when within the statutory
• 26:08limit of a state may
• 26:09not be offered at all
• 26:10centers, may only be offered
• 26:11under certain circumstances, or after
• 26:13the involvement of ethics and
• 26:14risk management.
• 26:16With comfort care,
• 26:18some institutions no longer feel
• 26:19that this is an appropriate
• 26:20option to offer, that families
• 26:22have the right to refuse
• 26:23dialysis or other interventions.
• 26:25Some centers only offer comfort
• 26:27measures.
• 26:28Some offer a degree of
• 26:29invasive medical support, and some
• 26:31offer all medical interventions including
• 26:33tracheostomy,
• 26:34ECMO, and dialysis.
• 26:36This means that individuals
• 26:38in the same region may
• 26:39be counseled differently and offer
• 26:41different interventions
• 26:42to based on the capabilities
• 26:43or views of the institution
• 26:44where they ultimately seek care.
• 26:48This table has practice patterns
• 26:50regarding prenatal counseling and dialysis
• 26:53initiation
• 26:53from thirty eight centers who
• 26:55offer neonatal dialysis.
• 26:57There was variability amongst the
• 26:59centers in contraindications
• 27:00to dialysis.
• 27:02About half reported having formal
• 27:03guidelines outlining what their criteria
• 27:05were.
• 27:06Over half had a minimum
• 27:07birth weight, and some had
• 27:09criteria based on genetic testing,
• 27:11pulmonary,
• 27:12or neurologic status.
• 27:15In many contexts, it's not
• 27:17uncommon for rules, rituals, attitudes,
• 27:19and beliefs to differentiate societal
• 27:21institutions.
• 27:22The top picture on the
• 27:23slide show three religious institutions,
• 27:26a synagogue, a mosque, and
• 27:27a church.
• 27:28People expect differences between religious
• 27:31institutions based on their professed
• 27:32doctrine.
• 27:34However, patients expect hospitals,
• 27:36one shown below, to provide
• 27:37similar care and may not
• 27:39be able to predict the
• 27:40available care options, determine hospital
• 27:42policies, or realize that other
• 27:44hospitals would offer different options
• 27:46when they choose an institution.
• 27:48This can challenge autonomy, justice,
• 27:49and potentially cause harm.
• 27:53Irrespective
• 27:54of the other constraints, we
• 27:56cannot ignore the current medical
• 27:57legal climate and its impact
• 27:58on the counseling and care
• 27:59we provide.
• 28:00This factor is affecting more
• 28:02and more of our patients.
• 28:05Many fetal anomalies are not
• 28:07identified until the eighteen to
• 28:08twenty two week anatomy scan,
• 28:09and about twenty five percent
• 28:10are not identified until the
• 28:12third trimester.
• 28:14Even before the Dobbs ruling,
• 28:15a fair number of individuals
• 28:17received a severe fetal diagnosis
• 28:18after their state's abortion limit.
• 28:21The June twenty twenty two
• 28:22ruling that there is no
• 28:23constitutional right to abortion has
• 28:25led to trigger laws at
• 28:26the state level with increasing
• 28:28restrictions.
• 28:30While it's continually changing, at
• 28:32the time this slide was
• 28:33created, forty one states prohibit
• 28:35abortion at a certain point
• 28:36in pregnancy.
• 28:37Fourteen ban abortion completely.
• 28:39Four ban abortion at six
• 28:40weeks. Two at twelve weeks.
• 28:43One at fifteen weeks,
• 28:44one at eighteen weeks, three
• 28:46at twenty two weeks,
• 28:47five at twenty four weeks,
• 28:49ten impose a ban at
• 28:50viability with varying interpretations on
• 28:52the gestational age that's considered
• 28:54viable for this purpose,
• 28:55and one state imposes a
• 28:56ban at twenty five weeks.
• 28:59Several states make rare exceptions
• 29:01for some fetal anomalies slightly
• 29:03beyond the gestational age statutory
• 29:04limit in their state. And
• 29:05on the other end of
• 29:06the spectrum,
• 29:07some prohibit abortion when within
• 29:09the statutory gestational
• 29:11age limit for their state
• 29:12in the context of a
• 29:13genetic diagnosis or anomaly.
• 29:15Collectively, this means that many
• 29:17states prohibit abortion before an
• 29:18individual even knows there's a
• 29:20severe fetal abnormality.
• 29:22More so, there's confusion amongst
• 29:23providers
• 29:24if abortion can be discussed
• 29:26as part of the counseling
• 29:27process in states where there
• 29:28are total bans or if
• 29:29the individual is beyond the
• 29:30gestational age limit in their
• 29:32state.
• 29:34While we don't know the
• 29:35full impact of the Dobbs
• 29:37ruling, a recent study evaluated
• 29:39neonatal and infant deaths after
• 29:41Texas senate bill eight, which
• 29:44banned abortion after embryonic cardiac
• 29:46activity without exemptions for congenital
• 29:48anomalies was enacted in twenty
• 29:49twenty one.
• 29:50Prior to this,
• 29:52the neonatal and infant deaths
• 29:54in Texas were comparable pretty
• 29:56much to the rest of
• 29:57the United States.
• 29:59Between twenty twenty one and
• 30:00twenty twenty two in the
• 30:01black box over here,
• 30:04neonatal deaths in Texas increased
• 30:05by ten point four percent
• 30:07in the green bar, whereas
• 30:08the rest of the country
• 30:09represented by the blue bar
• 30:10experienced a one point six
• 30:12percent increase.
• 30:13There was also a greater
• 30:14than expected number of infant
• 30:16deaths with a twelve point
• 30:17nine percent increase in Texas,
• 30:19the purple bar compared to
• 30:20one point eight percent, the
• 30:21rest bar in the rest
• 30:22of the country.
• 30:24Cause of death, the second
• 30:26graph on this slide shows
• 30:27that infant deaths attributed to
• 30:29congenital anomalies increased by twenty
• 30:31two point nine percent in
• 30:32Texas compared to a two
• 30:34point nine percent decrease in
• 30:35the rest of the country.
• 30:37These results suggest that restrictive
• 30:40abortion policies may lead to
• 30:41an increase in neonatal and
• 30:42infant mortality,
• 30:43especially in the context of
• 30:45congenital anomalies.
• 30:48To be clear, the Dobbs
• 30:50ruling and other legislation related
• 30:51to abortion is strictly about
• 30:53abortion and not the type
• 30:54of care provided after a
• 30:56live birth or other care
• 30:57provided during the pregnancy.
• 30:59At the same time, the
• 31:00ruling has led to proposed
• 31:02legislation related to personhood.
• 31:05Eighteen states have born alive
• 31:06protections,
• 31:07and others have proposed similar
• 31:09bills, most based on the
• 31:10concept of fetal personhood,
• 31:12which is incongruent with the
• 31:13US codes of law that
• 31:15establish personhood after birth.
• 31:17It's important to note, though,
• 31:18that the existence of personhood,
• 31:20whenever it's decided that exist,
• 31:22does not determine the standard
• 31:23of medical care.
• 31:25Recent language, though, such as
• 31:27unborn human being or child
• 31:29creates ambiguity.
• 31:30If there is forced birth
• 31:31of an unborn person, does
• 31:33that necessitate forced resuscitation?
• 31:35If a fetus can be
• 31:36claimed as a dependent on
• 31:38taxes, what does that mean
• 31:39for decisions
• 31:41about
• 31:43interventions in utero or after
• 31:44delivery?
• 31:45The ambiguity of the legislation
• 31:47has also led to questions
• 31:48about the ability to offer
• 31:50invasive in utero or fetal
• 31:51interventions given the risks of
• 31:53fetal demise, nuances of multiple
• 31:55gestational pregnancies,
• 31:56and the potential for overuse
• 31:58of therapies if the laws
• 32:00are interpreted that to mean
• 32:01that fetal life must be
• 32:02preserved at all cost.
• 32:04Some proposed legislations, like, just
• 32:06that any neonate displaying movement,
• 32:08sound, heartbeat, or pulsating umbilical
• 32:10cord receives life sustaining interventions.
• 32:14This could mean providing potentially
• 32:15medically inappropriate
• 32:17treatments to previable neonates and
• 32:18neonates with life limiting
• 32:20anomalies such as fetal kidney
• 32:22failure
• 32:23when they would not be
• 32:24beneficial or if the parents
• 32:26and families perceive them as
• 32:27causing suffering.
• 32:29In this context, it would
• 32:30contradict recommendations from the AAP
• 32:32and other medical organizations,
• 32:35undermine patient autonomy, and really
• 32:36undervalue that patient physician relationship
• 32:39because all of these complex
• 32:40decisions
• 32:41really should be made by
• 32:42individuals or families and providers
• 32:44who really have the training
• 32:45and knowledge to understand the
• 32:46limits of interventions, explore family
• 32:49values, and navigate goals of
• 32:51care.
• 32:54One ethical concern with recent
• 32:56abortion legislation is lethality labeling.
• 32:59In Louisiana,
• 33:00abortion is banned with rare
• 33:01exceptions for a profound and
• 33:03irremediable congenital or chromosomal anomaly
• 33:06that is incompatible with sustaining
• 33:07life after birth.
• 33:09The list they created includes
• 33:11diagnosis such as holoprosencephaly
• 33:13and bilateral renal agenesis that
• 33:15can be compatible with life.
• 33:18Presumably, the creators of the
• 33:19list either didn't have appropriate
• 33:21medical knowledge or made assumptions
• 33:23about children with profound impairments
• 33:25in a shortened lifespan or
• 33:26individuals with medical complexity.
• 33:29This could perpetuate misunderstandings
• 33:31about disability or living with
• 33:33medical complexity and promote ableism.
• 33:36Some feel that disability discrimination
• 33:38is a concern if the
• 33:39reason for abortion is disability
• 33:41or disease.
• 33:43On the other hand, if
• 33:44a pregnant individual's
• 33:45decision is not respected, their
• 33:47autonomy is challenged.
• 33:49They may feel that their
• 33:50child will suffer for the
• 33:51duration of his or her
• 33:52life. There can be long
• 33:53lasting detrimental physical and psychological
• 33:56effects for that individual and
• 33:57the entire family unit.
• 34:01Some have inappropriately assumed that
• 34:03the existence of personhood dictates
• 34:05neonatal care.
• 34:06In other words, when personhood
• 34:08exists, invasive interventions must be
• 34:10pursued even when it's against
• 34:12the standard of care or
• 34:13parental wishes.
• 34:15This has resulted in not
• 34:16being able to redirect care,
• 34:18provide comfort care for neonate
• 34:20when families felt interventions would
• 34:22cause their baby to suffer
• 34:23or only prolong the dying
• 34:24process.
• 34:25Some examples include that some
• 34:27were not able to redirect
• 34:29care for a twenty two
• 34:30weeker despite parental wishes and
• 34:32were told by their institution
• 34:33that they had to continue
• 34:34invasive interventions until the baby
• 34:36was actively dying on the
• 34:37ventilator.
• 34:38Others have resuscitated babies that
• 34:40they were felt were periviable
• 34:42without discussing comfort measures with
• 34:43the family when they previously
• 34:44would have.
• 34:46Some were not able to
• 34:47offer comfort measures for neonates
• 34:48with various life limiting diagnoses.
• 34:51Several have shared situations where
• 34:53they were asked to provide
• 34:54invasive interventions
• 34:56to pre viable neonates because
• 34:57they had a heartbeat or
• 34:58breathing after birth.
• 35:00Collectively, many have expressed situations
• 35:02where they were forced to
• 35:03provide care that they felt
• 35:04was medically inappropriate
• 35:06or against the parental
• 35:08wishes.
• 35:09With the concept of fetal
• 35:11personhood,
• 35:12it also transcends to decisions
• 35:14during the pregnancy.
• 35:16Some have felt pressure
• 35:18to promote fetal interventions to
• 35:20in an attempt to save
• 35:20a fetus as opposed to
• 35:22using a shared decision making
• 35:23approach with the pregnant individual.
• 35:26Some have expressed that they
• 35:27were unsure whether they could
• 35:28offer selective fetal reduction or,
• 35:30laser photocoagulation
• 35:32in the attempt to save
• 35:33a healthy twin and unsure
• 35:35that if they offer fetal
• 35:36surgery and the fetus demises,
• 35:38what those implications will be.
• 35:40One even described a woman
• 35:42undergoing a c section against
• 35:44her wishes in an attempt
• 35:45to save a fetus with
• 35:46a complex diagnosis.
• 35:48These situations are happening more
• 35:50and more frequently, really rule
• 35:52overruling those ethical principles of
• 35:53autonomy, beneficence, and nonmaleficence.
• 35:58The reality is even with
• 35:59the multiple ethical considerations and
• 36:01the constraints on the availability
• 36:03of care paths, innovative therapies
• 36:05have shifted the paradigm from
• 36:07fetal kidney failure and other
• 36:08complex fetal diagnoses being lethal
• 36:10or life limiting diagnoses to
• 36:12ones in which intensive care,
• 36:13surgeries, and kidney replacement therapies
• 36:16may lead to long term
• 36:17survival.
• 36:18However, we are not able
• 36:19to predict which fetuses will
• 36:21respond to in utero interventions
• 36:22and be pulmonary survivors.
• 36:25Likewise, we do not have
• 36:26models to predict which patients
• 36:28will survive to kidney transplant
• 36:29or which neonates will have
• 36:31detrimental complications related to interventions.
• 36:34The disease trajectory,
• 36:35irrespective of institutional
• 36:37experience, is uncertain and the
• 36:39clinical picture is still being
• 36:40understood.
• 36:42This really adds to the
• 36:43complexity involved in counseling individuals
• 36:45and families.
• 36:48Advances in prenatal screening and
• 36:49diagnostic
• 36:50technologies have allowed for the
• 36:51earlier and more frequent identification
• 36:53of complex fetal diagnoses.
• 36:56With the multiple potential care
• 36:57options, an increased number of
• 36:58families are seeking support, anticipatory
• 37:01guidance, and counseling.
• 37:03While learning the diagnosis earlier
• 37:05allows families time to grieve,
• 37:06make informed decisions, and plan
• 37:08for the remainder of pregnancy
• 37:10and when appropriate birth and
• 37:11neonatal care, it can also
• 37:13lead to more options and
• 37:14uncertainty as to the prognosis
• 37:16and most appropriate care plan.
• 37:18In this context,
• 37:20maternal fetal medicine specialists, neonatologists,
• 37:23nephrologists, palliative care providers, other
• 37:25subspecialists are tasked with providing
• 37:27comprehensive prognostic counseling
• 37:29and offering therapies in an
• 37:30ethical way where the burdens
• 37:31do not outweigh the benefits.
• 37:35Despite the importance of this
• 37:36comprehensive counseling care, we do
• 37:38have room for improvement.
• 37:40A recent survey showed that
• 37:41nephrologists and neonatologists
• 37:42do not consistently participate in
• 37:44counseling when there's a diagnosis
• 37:45of fetal kidney failure.
• 37:48Additionally, palliative care providers are
• 37:49never involved thirty five percent
• 37:51of the time and sometimes
• 37:52involved sixty percent of the
• 37:53time.
• 37:54This suggests that many families
• 37:56are making decisions without complete
• 37:58counseling care and support.
• 38:01Given the complex chronic nature
• 38:02of the diagnosis, the benefits
• 38:04and burdens to both the
• 38:05child and the family need
• 38:06to be understood.
• 38:08While it is reasonable
• 38:09for parents to assume some
• 38:11burdens in order to improve
• 38:12the outcome
• 38:13of their child's health,
• 38:15forcing them to provide a
• 38:17therapy that may unduly burden
• 38:18their child may not benefit
• 38:19that child.
• 38:21Parental refusal of in utero
• 38:23interventions and neonatal dialysis may
• 38:25be a thoughtful and loving
• 38:26decision
• 38:27or stem from misinformation and
• 38:29a lack of comprehensive counseling.
• 38:31Views and decisions really tend
• 38:32to evolve over time as
• 38:34families with the help of
• 38:35their care team really begin
• 38:36to understand what life with
• 38:38end stage kidney disease or
• 38:39foregoing interventions looks like.
• 38:43It's important to remember that
• 38:44many fetal anomalies are not
• 38:46identified until that eighteen to
• 38:47twenty two week anatomy scan,
• 38:49and some are not identified
• 38:50till long after that.
• 38:52While grieving, the family often
• 38:53has a limited window to
• 38:55gather more information about what
• 38:56those anomalies mean for their
• 38:58pregnancy and make decisions about
• 39:00abortion,
• 39:01fetal interventions when appropriate, or
• 39:02the care path that best
• 39:04aligns with their views.
• 39:06Mapped out on the slide,
• 39:06they're meeting with multiple subspecialists
• 39:09in green
• 39:10to discuss the prognosis and
• 39:11care paths in blue at
• 39:13a time when they really
• 39:14need trust with their care
• 39:15team.
• 39:16The obstetrician
• 39:17who they developed a very
• 39:18strong relationship with may or
• 39:19may not continue to follow
• 39:21them.
• 39:22When a family continues the
• 39:23pregnancy, there will be multiple
• 39:25visits, oftentimes with providers in
• 39:27different hospital systems.
• 39:29If they elect for comfort
• 39:30measures, it'll be important that
• 39:32everyone is aware of their
• 39:33goals
• 39:34and what that care will
• 39:35look like.
• 39:36When families elect for invasive
• 39:37interventions,
• 39:38we are going to be
• 39:39providing
• 39:40care for medically complex patients.
• 39:42We engage in ongoing conversations
• 39:45about the goals of care
• 39:46in purple and treatment paths
• 39:48as they may shift over
• 39:49time.
• 39:50With the multiple complications,
• 39:52challenges, and invasive procedures, there
• 39:54will be many decision points.
• 39:56Having a consistent care team,
• 39:58the palliative care team, who
• 39:59over time knows the family
• 40:01and their journey facilitates trust,
• 40:03open conversations, and a mutual
• 40:05understanding as they're navigating these
• 40:06complex decisions.
• 40:09When counseling a family, the
• 40:11goal is not simply to
• 40:12deliver information or direct
• 40:14care decisions and care. The
• 40:15intent is to engage in
• 40:17on dialogue that promotes autonomy
• 40:18and informed decision making.
• 40:20The focus should be on
• 40:22the patient,
• 40:23their values, their goals, their
• 40:25unique journey.
• 40:26Knowing this will make it
• 40:27easier to provide information the
• 40:29patient can drive meaning from
• 40:30it, make truly formed in
• 40:31decisions with.
• 40:33What we're really talking about
• 40:34is a shared decision making
• 40:35approach to care.
• 40:36When weighing the risks and
• 40:38benefits
• 40:39of a treatment path for
• 40:40pregnancy with a complex fetal
• 40:42diagnosis, parents consider that diagnostic
• 40:44and prognostic
• 40:45certainty,
• 40:46the likelihood of a good
• 40:48outcome, and avoidance of suffering
• 40:50and regret.
• 40:51It is our job to
• 40:52really engage in a partnership
• 40:54to better understand how in
• 40:55the context of their specific
• 40:57situation and goals or values
• 40:59the medical information becomes important.
• 41:01Based on that, we can
• 41:03arrive at a decision about
• 41:04the most appropriate plan of
• 41:06care that really builds trust,
• 41:07minimizes burden, and promotes the
• 41:08best patient outcomes.
• 41:10Parents rely on us to
• 41:12encourage them to express their
• 41:13hopes, fears, and goals.
• 41:15Only then can providers and
• 41:16parents collaborate to make decisions
• 41:18and plans really balancing autonomy
• 41:20and parental authority with medical
• 41:21recommendations and prognosis.
• 41:25When navigating goals of care,
• 41:27many factors influence the decisions
• 41:28that are made and how
• 41:29an individual determines what a
• 41:31good outcome
• 41:32is. These factors include personal
• 41:35attributes, such as age, medical
• 41:36history, gestation at diagnosis,
• 41:38the context of the pregnancy,
• 41:40if it was planned or
• 41:41they had a long journey
• 41:41to become pregnant,
• 41:43past experiences with the medical
• 41:44field, and socioeconomic
• 41:46status.
• 41:47Personal views including religious beliefs,
• 41:49cultural values, tolerance of uncertainty,
• 41:52views of quality of life,
• 41:53and beliefs about those various
• 41:55treatment options play a significant
• 41:57role.
• 41:58There's also the information itself
• 42:00and how it's conveyed to
• 42:01families,
• 42:02the severity of the anomalies,
• 42:03the expected prognosis,
• 42:05treatment options available, bias we
• 42:07portray in counseling, and the
• 42:08influences of families and friends
• 42:10matter.
• 42:11And then there are those
• 42:12structural influences, including whether an
• 42:14individual
• 42:14has access to all the
• 42:16options for various reasons.
• 42:17All this is to say
• 42:18that decisions are made based
• 42:19on multiple important factors beyond
• 42:21the medical
• 42:22facts or information conveyed to
• 42:23the family.
• 42:26When we take a step
• 42:27back and review the care
• 42:28journey, we can really appreciate
• 42:29how complex it is. Many
• 42:31pursue abortion or comfort measures.
• 42:33For those who pursue interventions,
• 42:35survival may be possible.
• 42:37With survival, though, there are
• 42:38unique challenges and long term
• 42:40care needs.
• 42:41I've given you a lot
• 42:42of information to digest in
• 42:44less than an hour, but
• 42:45think about the patients and
• 42:46families who are expected to
• 42:47digest this information and more
• 42:49sometimes over the course of
• 42:51a day or so.
• 42:52How can we provide total
• 42:53care to these patients?
• 42:55Irrespective
• 42:56of the goals of care
• 42:57treatment options chosen, palliative care
• 42:59is an important component to
• 43:00providing that total
• 43:02comprehensive care.
• 43:05Neonatal perinatal palliative care has
• 43:06really grown out of the
• 43:07field of hospice and palliative
• 43:08medicine with the goal of
• 43:09caring for and supporting families
• 43:11with a concerning life limiting,
• 43:13life threatening fetal or neonatal
• 43:15diagnosis.
• 43:16When such a diagnosis is
• 43:17made, the pregnancy and birth
• 43:19narrative has really been broken
• 43:20for that family.
• 43:22The goal is to offer
• 43:23comprehensive interdisciplinary
• 43:25care during the remainder of
• 43:26the pregnancy and afterwards,
• 43:27help parents process the information,
• 43:30consider the potential care pass,
• 43:31and parent their baby.
• 43:33For each family, this care
• 43:35is unique, and it is
• 43:36continued irrespective of the disease
• 43:37trajectory,
• 43:38treatment options chosen, or transitions
• 43:40in care settings.
• 43:42Many only associate palliative care
• 43:44with hospice.
• 43:45While an important component, it
• 43:47is a small portion of
• 43:48the comprehensive care provided. My
• 43:50goal is not to get
• 43:51the DNR or convince a
• 43:52family to pursue a comfort
• 43:53measures only approach to care.
• 43:55I'm an intensivist at heart,
• 43:57and anyone who knows me
• 43:58knows I like to take
• 43:58care of the most complex
• 44:00and critically ill babies in
• 44:01the NICU.
• 44:03My goal is in the
• 44:04midst of an intensive care
• 44:05mindset to provide value driven
• 44:07medical care
• 44:08and to provide total support
• 44:10and care to the entire
• 44:11family.
• 44:13The team can assist in
• 44:14communication,
• 44:15support families in complex medical
• 44:17decision making, and ensure that
• 44:19there is continuity in care.
• 44:21Recognizing that the family is
• 44:22experiencing loss at the time
• 44:24of diagnosis,
• 44:25bereavement and grief support are
• 44:27offered from the beginning through
• 44:28that entire illness course and
• 44:30beyond.
• 44:31At any one point in
• 44:32time, there really is a
• 44:33balance between curing, healing, and
• 44:35bereavement.
• 44:37The focus is always on
• 44:38quality of life and comfort
• 44:40irrespective of those medical management
• 44:42goals.
• 44:43In addition to helping families
• 44:44understand the diagnosis and medical
• 44:46management, we provide opportunities for
• 44:48birth planning and memory making.
• 44:50Again, end of life care
• 44:51is one component for some
• 44:53patients.
• 44:56Mapped out on this slide,
• 44:57there should be continual support,
• 44:59consistency, and counseling through all
• 45:01phases in care.
• 45:02This continuity really facilitates seamless
• 45:04transitions in care and a
• 45:06unique journey opportunity to walk
• 45:07the journey with the family.
• 45:09Immediately after diagnosis, after as
• 45:11I mentioned, families are grieving.
• 45:13They often need time to
• 45:15process the information, and they
• 45:16may need more information before
• 45:18making a decision.
• 45:20As the pregnancy continues, they're
• 45:21really beginning to incorporate the
• 45:23medical information
• 45:24into their decision making framework.
• 45:27Our job is to ensure
• 45:28that all providers are aware
• 45:30of the information,
• 45:31where they are in their
• 45:32journey,
• 45:33and their goals so that
• 45:34unified care is provided.
• 45:37It's important that we help
• 45:38families understand what the medical
• 45:39information means in the context
• 45:41of their views and values.
• 45:43I find it helpful to
• 45:44remember that when it comes
• 45:45to a fetus or neonate,
• 45:47the parents may not have
• 45:47thought about quality of life
• 45:48or advanced care planning for
• 45:50themselves, let alone their baby.
• 45:58It's also important that we
• 46:00help families celebrate moments during
• 46:01the pregnancy and make beautiful
• 46:03memories.
• 46:04When the pregnancy continues,
• 46:06even after delivery, families may
• 46:08need more information or time
• 46:10to
• 46:11determine the most appropriate care
• 46:12plan for their baby and
• 46:13their family.
• 46:14We should provide them with
• 46:15clear information and support a
• 46:17shared decision making approach to
• 46:18care. This includes really facilitating
• 46:21comprehensive conversations,
• 46:23understanding how they're making medical
• 46:24decisions,
• 46:25navigating how the medical information
• 46:27is important in the context
• 46:28of these decisions, and at
• 46:30times reshaping their expectations for
• 46:32the future.
• 46:33The palliative care team is
• 46:35a consistent presence and can
• 46:36help anticipate the decision points,
• 46:39ensure the family has all
• 46:40the information they need, and
• 46:41really help team members and
• 46:42families realize that goals may
• 46:44evolve and change over time.
• 46:46We support families from the
• 46:47time of diagnosis
• 46:48through the remainder of the
• 46:49pregnancy neonatal course and beyond.
• 46:53When an individual or family
• 46:54is faced with a severe
• 46:55fetal diagnosis, the care paths
• 46:57and treatment options are incredibly
• 46:59complex.
• 47:00As we continue to learn
• 47:01more about the diagnoses
• 47:02and how innovative the interventions
• 47:05can change outcomes, there are
• 47:06multiple ethical considerations the medical
• 47:09community is continuing to navigate.
• 47:11There may be external factors
• 47:13that limit the reality of
• 47:14some of these paths for
• 47:15individuals.
• 47:16In the midst of this,
• 47:17we are tasked with supporting
• 47:18families,
• 47:19counseling them, and helping them
• 47:21navigate goals of care often
• 47:22in the face of uncertainty.
• 47:24This can be incredibly challenging,
• 47:26fraught with emotions, and incredibly
• 47:28rewarding.
• 47:29By taking the time to
• 47:30learn about the family, how
• 47:31they're making decisions, and what's
• 47:33important to them, the team
• 47:34will be prepared to help
• 47:35them navigate the medical decisions.
• 47:37The difficult decisions that are
• 47:39being made, the care that's
• 47:40being provided, and the experience
• 47:42the family has impacts not
• 47:43only the time with their
• 47:44baby, but the time afterwards.
• 47:47The palliative care team can
• 47:48be a consistent presence across
• 47:50all phases and care to
• 47:51support the family and team
• 47:52ensuring that they have all
• 47:54the information they need and
• 47:55help the family navigate, evolve,
• 47:56and goals of care and
• 47:58multiple complex medical decisions.
• 48:01And to finish things off,
• 48:02these are three of my
• 48:03babies.
• 48:04The first is a girl
• 48:05who had a complex course
• 48:06including in utero interventions for
• 48:08key to kidney failure, an
• 48:10ostomy placed in her first
• 48:11days of life and neonatal,
• 48:13peritoneal dialysis.
• 48:15She received her first kidney
• 48:16shortly after she turned two
• 48:18and is doing well.
• 48:20The second is a beautiful
• 48:22girl whose parents took her
• 48:24home with a comfort measure's
• 48:25only approach to care where
• 48:26she was surrounded by love
• 48:27her entire life.
• 48:29The third delivered prematurely after
• 48:31receiving serial amnio infusions.
• 48:33He was initially intubated.
• 48:35Then care was redirected when
• 48:37it became clear that medical
• 48:38interventions were no longer helping.
• 48:40He died at six hours
• 48:41of life from pulmonary hypoplasia.
• 48:44The family was appreciative that
• 48:45we were willing to attempt
• 48:46to save their son's life,
• 48:48thankful for the time that
• 48:49they had with him, and
• 48:49ultimately the beautiful end of
• 48:51life experience they gave him
• 48:52when it became clear that
• 48:53the medical interventions were no
• 48:54longer helping.
• 48:56When we invest ourselves in
• 48:57the journey with the families,
• 48:58we can support them through
• 48:59some of the most difficult
• 49:00times and allow parents to
• 49:02parent and make beautiful memories.
• 49:04It's really an honor and
• 49:05a privilege that they let
• 49:06us endure in such sacred
• 49:07and intimate moments and to
• 49:08be part of their journey.
• 49:10And with that, I will
• 49:11open it up to discussion
• 49:12and let you sort through
• 49:13and unravel all of this.
• 49:15Hopefully, you can come up
• 49:16with some solutions to ensure
• 49:17that we continue to provide
• 49:19complete counseling and care for
• 49:20these complex fetal and neonatal
• 49:22diagnoses.
• 49:28Thank you so much, doctor
• 49:30Poteza. That was an incredible
• 49:32overview of some of the
• 49:33really
• 49:34complex situations that that you
• 49:35encounter that, you know, as
• 49:37an adult physician, I it's
• 49:39hard for me to even
• 49:40wrap my head around how
• 49:40how difficult that must be.
• 49:42So really appreciate you're taking
• 49:43the time, and let's open
• 49:45up to questions.
• 49:47Who wants to start us
• 49:49out?
• 49:52We have no questions.
• 49:54I'm relying on you guys
• 49:55to sort through all this.
• 49:57I will start then. I'll
• 49:57take the moderator's prerogative. You
• 49:59know, I was struck when
• 50:00you were talking about some
• 50:01of the bans on,
• 50:04obviously, I'm I'm well aware
• 50:05of the implications of the
• 50:07Dobbs decision and and abortion
• 50:08bans in some states.
• 50:10But what I was less,
• 50:12aware of was that there
• 50:13there are also is it
• 50:14that there are actually laws
• 50:16or just interpretations of laws
• 50:17that also seem to impose
• 50:20or mandate
• 50:21aggressive interventions
• 50:23after
• 50:24birth, which seems to me
• 50:25like that is is fundamentally
• 50:27a step even farther because
• 50:29I'm not sure there's
• 50:31equal precedent even for,
• 50:33you know, non neonatal children
• 50:35that parents don't have discretion,
• 50:36you know, except at those
• 50:37very ends of the IPO
• 50:38framework where things are obviously
• 50:40going to cause harm and
• 50:41are impermissible,
• 50:42or it would be so
• 50:43harmful to withhold something that
• 50:45it would be obligatory to
• 50:46give it, that there's a
• 50:47lot of parental discretion. And
• 50:49and so I'm wondering, like,
• 50:50at can you talk a
• 50:52little bit more about that?
• 50:53Like, where does that end?
• 50:54Like, how do we define
• 50:55the end of the neonatal
• 50:56period? Are these these explicitly
• 50:58neonatal, or is it just
• 51:00interpretation because there's a lot
• 51:01of confusion about the law?
• 51:02Because I I I found
• 51:03that very striking and and
• 51:05with a lot of potential
• 51:06for slippery slope. Intentionally put
• 51:08up the language from that
• 51:09bill.
• 51:10As far as I'm aware,
• 51:11none of those bills have
• 51:12been passed yet, but there
• 51:13are several states, I think,
• 51:14eight who have,
• 51:16bills that have been proposed
• 51:18to that would
• 51:20essentially
• 51:21obligate
• 51:22life sustaining interventions.
• 51:23The one the language from
• 51:24the one that I put
• 51:25up was from a bill
• 51:26that is in the
• 51:28house in Ohio.
• 51:30But but
• 51:31But only haven't passed to
• 51:32date. But what are what's
• 51:33proposed is is just for
• 51:35neonates or for all children?
• 51:37For neonates. Okay. So in
• 51:38that situation and the one
• 51:39that I put up there,
• 51:40it was for,
• 51:42I can go back to
• 51:43the slide.
• 51:48Oh, so
• 51:49exhibits
• 51:50any movement, sound, pulsating, umbilical
• 51:52cord, or heartbeat, the hospital
• 51:54shall ensure the infant is
• 51:55provided aggressive life sustaining interventions,
• 51:58and they specifically designated twenty
• 52:00two to twenty six weeks
• 52:01gestation,
• 52:02less than twenty one weeks,
• 52:03but demonstrated
• 52:04survival or
• 52:06an infant with disability regardless
• 52:07of the gestational age. Got
• 52:09it. Okay. Sorry.
• 52:10I I I missed that
• 52:11because I think I was
• 52:12just Yeah. So
• 52:14flabbergasted and was trying to
• 52:15wrap my head around it.
• 52:16So after twenty six weeks,
• 52:18then it kind of reverts
• 52:19to the standard, at least
• 52:20per these proposed bills that
• 52:22you can withhold this. After
• 52:23twenty six weeks, the standard
• 52:24would be to provide life
• 52:25sustaining interventions unless there's
• 52:28other significant morbidity.
• 52:29Okay. Great. Thank you for
• 52:31clarifying that. Absolutely. And sorry,
• 52:32I I I didn't get
• 52:33that the first time.
• 52:36Any other questions that we
• 52:38have? Yes.
• 52:42Oh, someone else hasn't got
• 52:43a mic, and we've got
• 52:44a question on Zoom.
• 52:46Hi. Thank you so much.
• 52:47That was
• 52:49that was a lot to
• 52:51to to get in there,
• 52:52and it's, it's remarkable the
• 52:54way that you presented it
• 52:55all.
• 52:57Katia, I'm one of the
• 52:58pediatric cardiologists. By the way,
• 53:00nice to meet you. Nice
• 53:01to meet you. You.
• 53:02So my question is about
• 53:05when when,
• 53:06when the experts disagree,
• 53:09and,
• 53:10you know, what what have
• 53:12you
• 53:13or what is,
• 53:16what have you found to
• 53:17be,
• 53:18effective
• 53:19in terms
• 53:20of kind of maintaining that
• 53:22sort of shared decision making
• 53:23model
• 53:25when experts disagree?
• 53:26And I think the reality
• 53:27is that's happening
• 53:29more and more commonly as
• 53:31we're seeing children with more
• 53:32complex medical interventions surviving longer,
• 53:35more therapies to offer with,
• 53:38variable outcomes.
• 53:40I think one thing that's
• 53:41important is that providers
• 53:43talk amongst themselves
• 53:45and really understand
• 53:47why individuals are coming from
• 53:48either the perspective of we
• 53:50think this intervention is futile,
• 53:52which in my mind is
• 53:53very hard to argue the
• 53:55legal definition of futility regardless
• 53:57of how we feel personally
• 53:59about it, from a legal
• 54:00standpoint
• 54:01versus why individuals think if
• 54:03a family is appropriately counseled
• 54:05that
• 54:06medical interventions may be reasonable
• 54:09to offer.
• 54:10I think
• 54:11because of my multiple hats,
• 54:13I have a unique perspective,
• 54:15which gives me far less
• 54:16moral distress than others. I
• 54:18get the benefit of meeting
• 54:20with families prenatally to see
• 54:22with a lot of these
• 54:22very serious diagnoses
• 54:24that many families select abortion
• 54:26or comfort measures. It's only
• 54:28a small subset that make
• 54:30their way to the NICU
• 54:31asking for invasive interventions,
• 54:33and I get to see
• 54:34the extensive counseling they've received
• 54:36about really what that course
• 54:37could look like.
• 54:38I also then, in my
• 54:39other hat, get to see
• 54:40the benefit of going into
• 54:41the homes after words to
• 54:44see not just three months
• 54:45while they're in the NICU,
• 54:46six months, two years, six
• 54:48years, what life looks like
• 54:49for that family. And it's
• 54:50given me a far more
• 54:52balanced perspective
• 54:53about the varying views of
• 54:55quality of life that individuals
• 54:56may have.
• 55:00Any other questions that we
• 55:02have in the audience?
• 55:05Oh, over at the grave.
• 55:09Hi. Thank you so much
• 55:11for that
• 55:11very
• 55:13wonderful overview that I'm I'm
• 55:14working on on digesting. I'm
• 55:16I'm curious,
• 55:18when you were talking about
• 55:19sort of the financial burdens,
• 55:22seems like there's a lot
• 55:22of injustice there, and it
• 55:24it feels very unjust that
• 55:25that would be part of
• 55:26the decision making process for
• 55:28families.
• 55:30But
• 55:31that being said, I'm wondering
• 55:33what role there is in
• 55:34terms of, like,
• 55:35are families prepared as they're
• 55:37making these decisions? Or do
• 55:39they know what the financial
• 55:40burdens will be, or or
• 55:41what role does that or
• 55:43should that play in in
• 55:44counseling?
• 55:46It's a tough one because
• 55:48we all like to think
• 55:49that we live in an
• 55:50ideal world where that shouldn't
• 55:52impact. Because in all reality,
• 55:53it should not impact whether
• 55:55an individual
• 55:56is able to choose whether
• 55:58it's a heart transplant, dialysis
• 55:59for any diagnosis for their
• 56:01child.
• 56:03But there have been multiple
• 56:04families who weren't prepared and
• 56:06didn't know and then weren't
• 56:07able to sustain
• 56:09that commitment long term. I
• 56:11think it is appropriate to
• 56:13counsel families about what that
• 56:15path will look like. I've
• 56:16had I had one family
• 56:18recently.
• 56:19They had a postnatal diagnosis,
• 56:20a complex genetic diagnosis,
• 56:22and had always been very
• 56:24well off.
• 56:25She was a lawyer, had
• 56:26her own law practice,
• 56:28and they ultimately,
• 56:30for quality of life reasons,
• 56:31chose comfort measures, and their
• 56:33child died at six months.
• 56:34But
• 56:35when we talked about this
• 56:36and the importance of
• 56:38highlighting to families the financial
• 56:40implications, she said told me
• 56:41she's felt validated for first
• 56:43time. The reality is her
• 56:45child living six months with
• 56:47home hospice and palliative care,
• 56:48she had to close down
• 56:49her law practice. And she
• 56:51said she's lucky enough where
• 56:52in a couple of years,
• 56:53she will be able to
• 56:54financially recover, but most families
• 56:56aren't.
• 56:57It's nice for us to
• 56:58think
• 57:00we can offer dialysis.
• 57:01Does a family really have
• 57:03the capability to relocate,
• 57:05come to the hospital several
• 57:07days a week if they're
• 57:08receiving hemodialysis,
• 57:09have the support to do
• 57:10home dialysis, and then all
• 57:12the ancillary costs that insurance
• 57:13isn't gonna cover.
• 57:15It is a huge injustice,
• 57:17and I wish we had
• 57:18better solutions for it. But
• 57:20it's the reality that many
• 57:21of our faith patients face.
• 57:24Thank you.
• 57:27Oh, oh, go ahead.
• 57:30Hi. Thank you so much.
• 57:31I'm Sarah Cross. I'm one
• 57:32of the MFMs, and I
• 57:33I think I have a
• 57:34question, but it might be
• 57:35more of a commiseration.
• 57:36I I think a lot
• 57:37about the language that we
• 57:38use. And over the course
• 57:39of my
• 57:41career now, a lot of
• 57:42what used to be considered
• 57:43lethal is now
• 57:45life limiting because of, you
• 57:46know, amazing
• 57:48advances in medicine.
• 57:50And we've just really moved
• 57:51away from using that term
• 57:52for most,
• 57:54like, fetal,
• 57:55diagnoses. And, you know, here
• 57:57I am in Connecticut, and
• 57:58that's doesn't really come up
• 57:59as as an issue for
• 58:00us, but I I worry
• 58:02a lot about the law,
• 58:03which is very black and
• 58:04white and doesn't see things
• 58:06in in the gray that
• 58:07we know is true.
• 58:09And the loss of, like,
• 58:10that term that, you know,
• 58:11most things are not called
• 58:12lethal anymore and really what
• 58:14that means for choice for
• 58:15patients in a lot of
• 58:16the US.
• 58:18And I guess it's not
• 58:20a question, but more of
• 58:20a comment. Or or if
• 58:21you have thoughts about kind
• 58:22of, you know, and it's
• 58:24a lot of things that's
• 58:25not accurate to call them
• 58:26lethal, but that really has
• 58:27limited, I think, a lot
• 58:29of patients,
• 58:30given
• 58:31their coexistence
• 58:32of medical advances with the
• 58:35legislation.
• 58:37It's really hard to argue
• 58:39now that what lethal is.
• 58:41And the interesting part is
• 58:42if you really look at
• 58:43some of the language in
• 58:44some of the laws, bills,
• 58:45especially states that have chosen
• 58:48in addition to
• 58:50allowing exemptions for lethal or
• 58:52life limiting conditions,
• 58:54make list of conditions, many
• 58:55of us would argue that
• 58:57those conditions aren't lethal.
• 59:06Yes. Okay. Oh, oh, actually,
• 59:08before you ask,
• 59:09just to remind you on
• 59:10the Zoom, please don't raise
• 59:12your hand if you have
• 59:12a question. Please enter your
• 59:13question into the q and
• 59:15a so that we can
• 59:16we can read it. Thank
• 59:16you.
• 59:19I'm I'm interested in in
• 59:20the,
• 59:22how,
• 59:23ethically
• 59:24obligatory it is to to
• 59:26present all of the options
• 59:27for for families. And,
• 59:30so any any patient with
• 59:32a a a lethal
• 59:33diagnosis, what we
• 59:34don't you'd like to use
• 59:35that phrase, but lethal diagnosis
• 59:37for renal disorders in utero,
• 59:39are we obligated to let
• 59:41them know about all these
• 59:43options,
• 59:44of, the infusions and and
• 59:46taking out this long course.
• 59:48And it seems like perhaps
• 59:49we are. And then I
• 59:51think a lot about,
• 59:52how we handle patients who
• 59:54have Nek Totalis
• 59:55and come back from the
• 59:56OR, and we universally
• 59:58say, you know, your baby
• 01:00:00cannot survive and we need
• 01:00:02to transition to comfort care
• 01:00:03when there is that option
• 01:00:04of continuing,
• 01:00:07care with prolonged TPN and
• 01:00:10eventual, you know, bowel and,
• 01:00:12possibly liver transplant. I think
• 01:00:14it's sort of analogous
• 01:00:15to what you're dealing with.
• 01:00:16Maybe maybe,
• 01:00:18there's a lot of differences,
• 01:00:19of course, the outcome from
• 01:00:20bowel transplant compared to kidney
• 01:00:22transplant and the suffering that
• 01:00:24goes on with dialysis versus
• 01:00:26prolonged TPN and infections and
• 01:00:27so forth. But we sort
• 01:00:29of treat them very different
• 01:00:30differently, and I I I
• 01:00:32wonder why
• 01:00:33and if you have any
• 01:00:34thoughts about how we should
• 01:00:35handle that situation
• 01:00:36Yeah. It is for both
• 01:00:37of them. Interesting. I think
• 01:00:40for a neonate who's already
• 01:00:41there, been to the OR,
• 01:00:43a lot of us
• 01:00:44interpret their suffering
• 01:00:46and use that as justification
• 01:00:48for
• 01:00:49the decisions we're either presenting
• 01:00:51or options we're presenting, I
• 01:00:53should say, to a family.
• 01:00:55You know, and the reality
• 01:00:56is you're right. Very few
• 01:00:57centers have a pathway
• 01:00:59to
• 01:01:00small bowel transplant,
• 01:01:03and it might not be
• 01:01:04appropriate. A lot of those
• 01:01:06children are in DIC are
• 01:01:08actively
• 01:01:09dying. Some aren't.
• 01:01:11Certainly,
• 01:01:12when I was, you know,
• 01:01:13at my prior institution, we
• 01:01:15would get
• 01:01:16every once while once or
• 01:01:17twice a year the referral
• 01:01:18of the neck totalis baby
• 01:01:20whose family
• 01:01:21knew enough to ask the
• 01:01:22questions and really push to
• 01:01:23be transferred.
• 01:01:24And
• 01:01:25did many of them pass
• 01:01:27away during their hospital journey?
• 01:01:28Yes. But every once in
• 01:01:29a while, you got a
• 01:01:30baby who survived and is
• 01:01:32now several years old, and
• 01:01:34their family thinks that
• 01:01:36their child has significant quality
• 01:01:38of life. And more importantly,
• 01:01:39I think even the
• 01:01:41babies who passed away, the
• 01:01:43families were appreciative to hear
• 01:01:45that there were options and
• 01:01:47felt like they were trying
• 01:01:48and advocating for their child.
• 01:01:55Great. We have a we
• 01:01:56have a question from the
• 01:01:57Zoom.
• 01:01:59And,
• 01:01:59it's the request is, you
• 01:02:01know, if you could speak
• 01:02:02just for a few minutes
• 01:02:03on fetal diagnoses that aren't
• 01:02:05necessarily considered
• 01:02:07terminal or even life limiting,
• 01:02:09because I know, again, as
• 01:02:09we discussed the the terminology
• 01:02:11like terminal lethal, life limiting
• 01:02:12can be fraud. But but
• 01:02:14nonetheless are accompanied by significant
• 01:02:16lifelong,
• 01:02:17this person must in quotes
• 01:02:19disability,
• 01:02:19the degree to it of
• 01:02:21which may be hard to
• 01:02:21estimate until postnatal and early
• 01:02:23childhood development,
• 01:02:25such as, Chiari malformations and
• 01:02:27myelomeningocele.
• 01:02:29And actually, myelomeningocele
• 01:02:31is what popped into
• 01:02:33my head and is the
• 01:02:34question to speak to
• 01:02:36the different options or how
• 01:02:38we counsel?
• 01:02:40I I it's it's not
• 01:02:41clear from but I but
• 01:02:42I think my sense is
• 01:02:44just if you could sort
• 01:02:45of review sort of maybe
• 01:02:46some of the
• 01:02:48ethical considerations that are, you
• 01:02:49know, sort of comparing and
• 01:02:50contrasting some of the ethical
• 01:02:52considerations in those cases versus
• 01:02:53others. But that's I'm intuiting
• 01:02:55based on And part of
• 01:02:56it depends on if there's
• 01:02:58potential
• 01:02:59in utero or fetal interventions
• 01:03:01to offer. For example, in
• 01:03:03the case of myelomeningocele,
• 01:03:05there
• 01:03:06is fetal surgery that we
• 01:03:07could offer that
• 01:03:09potentially could improve motor outcomes.
• 01:03:11There are risks associated with
• 01:03:12that, which is a whole
• 01:03:13talk in and of itself
• 01:03:15because you're potentially putting that
• 01:03:17fetus at risk of prematurity,
• 01:03:19which also has significant
• 01:03:21morbidity
• 01:03:21associated with it when you're
• 01:03:23and it really comes down
• 01:03:24to the counseling process and
• 01:03:26talking to those families about
• 01:03:27the risk and benefit to
• 01:03:28both to the pregnant individual
• 01:03:30and the fetus with either
• 01:03:31care path.
• 01:03:33As far as
• 01:03:35comfort measures, that would not
• 01:03:36be an acceptable option for,
• 01:03:39most people to offer with
• 01:03:41diagnoses such as myelomeningocele
• 01:03:42because we feel that that
• 01:03:44is out of the zone
• 01:03:45of parental discretion. But thinking
• 01:03:47back to the fetus, if
• 01:03:47it's within the gestational age
• 01:03:47and statutory limit of the
• 01:03:47state,
• 01:03:51termination is
• 01:03:53an option. If a family
• 01:03:54does not choose
• 01:03:55termination, then, really, their pathway
• 01:03:57is either in utero interventions
• 01:03:59or invasive interventions
• 01:04:00knowing that their child will
• 01:04:02have complex medical needs for
• 01:04:04their entire life. Okay. And
• 01:04:06and the this question actually
• 01:04:07clarified,
• 01:04:08sort of how do you
• 01:04:09address the gray area in
• 01:04:10counseling when it's hard to
• 01:04:11estimate or prognosticate about neurological
• 01:04:13function?
• 01:04:16I think it's
• 01:04:18honesty and transparency.
• 01:04:20And there have been times
• 01:04:21what I've seen
• 01:04:22more recently is
• 01:04:24certain
• 01:04:25subtle CNS anomalies on fetal
• 01:04:28imaging. We're better at ultrasound
• 01:04:29now. We have fetal MRI.
• 01:04:31And the reality is that
• 01:04:32the early
• 01:04:33gestation,
• 01:04:35you cannot see migrational disorders
• 01:04:37or other more severe findings,
• 01:04:39but families
• 01:04:40sometimes are coming for counseling
• 01:04:41because they're making decisions potentially
• 01:04:43about continuing the pregnancy.
• 01:04:45And we have to be
• 01:04:45honest with them that we
• 01:04:46don't think that their child
• 01:04:48will have what we would
• 01:04:49consider a normal neurologic outcome,
• 01:04:52but there is a spectrum
• 01:04:53from mild to severe delays.
• 01:04:56Unfortunately,
• 01:04:57many times, we don't know
• 01:04:59whether they're more likely to
• 01:05:00be in the mild versus
• 01:05:02severe at least early in
• 01:05:03pregnancy. Sometimes
• 01:05:05later in pregnancy, when you
• 01:05:06see a migrational disorder,
• 01:05:08schizencephaly,
• 01:05:09certain CNS diagnosis, you can
• 01:05:11say you would expect severe
• 01:05:13or profound impairments.
• 01:05:14Impairments. But the reality is
• 01:05:15early on before the gestational
• 01:05:17age limit, if they're making
• 01:05:18decisions whether to continue the
• 01:05:19pregnancy, we don't have those
• 01:05:21answers. And those are probably
• 01:05:22some of the hardest counseling
• 01:05:24sessions for me and the
• 01:05:25ones that really
• 01:05:28you leave there not feeling
• 01:05:30great because you're the family
• 01:05:31is coming to you for
• 01:05:32help, and you're just telling
• 01:05:33them,
• 01:05:34I know the outcome is
• 01:05:35going to be some impairments.
• 01:05:37It could be
• 01:05:38mild speech delays to
• 01:05:40requiring help with all their
• 01:05:41activities of daily living. And
• 01:05:43the reality is at this
• 01:05:44age, in gestation, I cannot
• 01:05:45tell you
• 01:05:46where that child is going
• 01:05:47to lie.
• 01:05:48Yeah. Thank you. I I
• 01:05:49think that that's a common
• 01:05:51theme that that we experience
• 01:05:53in multiple domains of medicine,
• 01:05:54the uncertainty and the discomfort
• 01:05:56that not only
• 01:05:57patients and their families have
• 01:06:00with it, but also that
• 01:06:01we, I think, as clinicians
• 01:06:02have with it, it's very
• 01:06:03uncomfortable.
• 01:06:04And,
• 01:06:05I agree. Honesty and transparency
• 01:06:07and humility with respect to
• 01:06:09the lack of our ability
• 01:06:10to prognosticate
• 01:06:11so often
• 01:06:12is really key. So thank
• 01:06:13you. Other questions
• 01:06:16in the audience
• 01:06:18or on Zoom?
• 01:06:26Any other questions? Well, then
• 01:06:28I'll I will ask another
• 01:06:29question while while we're waiting
• 01:06:30for more to come in.
• 01:06:31You, you know, you you
• 01:06:32really kind of gave us
• 01:06:33a quite a a sweeping
• 01:06:35view of the landscape of
• 01:06:36all of the potential barriers
• 01:06:38to, you know, really
• 01:06:40inform shared decision making and
• 01:06:42providing care that's, you know,
• 01:06:44going to support the goals
• 01:06:45and values of the the
• 01:06:48whole family unit, not just
• 01:06:50one individual.
• 01:06:51What in your experience do
• 01:06:52you think is you know,
• 01:06:54it can you identify one
• 01:06:55barrier that seems particularly salient
• 01:06:57either in your personal practice
• 01:06:59or, you know, in the
• 01:07:00current landscape that that you
• 01:07:01feel is maybe the most
• 01:07:02daunting? Is it the financial
• 01:07:04limitations that others have brought
• 01:07:05up? Is it, you know,
• 01:07:06the evolving legal landscape? Is
• 01:07:08it just the simple
• 01:07:09uncertainty that that like, is
• 01:07:11is there one that that
• 01:07:12seems to sort of outweigh
• 01:07:13some of the others in
• 01:07:14your experience,
• 01:07:16or is it kind of
• 01:07:17very much context dependent? I
• 01:07:18think the medical legal landscape
• 01:07:20is continually changing, which doesn't
• 01:07:23help things. The financial barriers,
• 01:07:25geographic
• 01:07:26barriers are really hard and
• 01:07:28certainly on a
• 01:07:30state level, on a national
• 01:07:31level, there are ways we
• 01:07:33can partner with our medical
• 01:07:34organizations
• 01:07:35to help provide more appropriate
• 01:07:37counseling or aid to families.
• 01:07:39But on an individual provider
• 01:07:41level, something that we can
• 01:07:42all do is recognize our
• 01:07:44own bias and
• 01:07:45the way we counsel and
• 01:07:46be very intentional about the
• 01:07:48words we use.
• 01:07:50Yeah. And I think that's
• 01:07:50a really good point too.
• 01:07:51The the idea of recognizing
• 01:07:53our own bias as opposed
• 01:07:54to just kind of trying
• 01:07:55not to have bias because
• 01:07:56the the fact is we
• 01:07:57we all have bias. That
• 01:07:58is the human condition. That's
• 01:07:59how our brains make shortcuts
• 01:08:01and, you know, being aware
• 01:08:02of that and trying to
• 01:08:03mitigate it rather than trying
• 01:08:04to get to some
• 01:08:06point of con convincing yourself
• 01:08:08you don't have bias because
• 01:08:09sometimes I think that's actually
• 01:08:10the space in which we
• 01:08:11can make some of the
• 01:08:12most harmful decisions unknowingly when
• 01:08:14whereas if we can acknowledge
• 01:08:15our bias and recognize when
• 01:08:17we may be overly inclined
• 01:08:18toward one path that might
• 01:08:19be right for us, but
• 01:08:20not for for our patients.
• 01:08:22Great.
• 01:08:24Other oh,
• 01:08:25yes. You oh, hang on
• 01:08:27one sec.
• 01:08:31I was just wondering if
• 01:08:32you've seen technology increase access
• 01:08:34to care and,
• 01:08:36autonomy and decision making. Are
• 01:08:38people reaching out to get
• 01:08:40counseling
• 01:08:41when they live in an
• 01:08:42area where it may not
• 01:08:43be readily available?
• 01:08:45If the families have resources,
• 01:08:48at least what I'm seeing
• 01:08:50is referrals
• 01:08:51from
• 01:08:52families from,
• 01:08:53you know, Oklahoma, Oregon,
• 01:08:55various places coming out, but
• 01:08:57that's relying on them having
• 01:08:59the ability to be able
• 01:09:00to take time off work,
• 01:09:01come out for counseling process,
• 01:09:03potentially relocating depending on the
• 01:09:05results of, you know, the
• 01:09:07diagnosis and what's potential care
• 01:09:09options we have to offer.
• 01:09:14Any other questions
• 01:09:16from either the audience here?
• 01:09:18Oh, great.
• 01:09:22Getting my steps in.
• 01:09:25This this might be kind
• 01:09:27of a I I don't
• 01:09:28think
• 01:09:29anyways,
• 01:09:30but it's a it's a
• 01:09:31question that I I I
• 01:09:32face. But when I I
• 01:09:33think, like, palliative care is
• 01:09:34awesome. And I think, like,
• 01:09:36so many patients would benefit
• 01:09:38from it, but it has
• 01:09:40this stigma, which I think
• 01:09:41you mentioned that, like, you
• 01:09:42know, end of life care
• 01:09:44or life, whatever, limiting or
• 01:09:46what you know, is this
• 01:09:47certain it's just like a
• 01:09:48fraction.
• 01:09:49What do you propose
• 01:09:51as
• 01:09:52a vehicle
• 01:09:54or a,
• 01:09:55or a step to move
• 01:09:56away from that? Do you
• 01:09:58think there,
• 01:10:00do you think that it's
• 01:10:00something that
• 01:10:02is,
• 01:10:04like
• 01:10:05yeah.
• 01:10:06I think it comes back
• 01:10:08to recognizing
• 01:10:09our bias and,
• 01:10:11patient's bias. The reality is,
• 01:10:13especially in the context of
• 01:10:15a fetus or an NA,
• 01:10:16if the pregnant individual or
• 01:10:18their family has heard
• 01:10:20of palliative care before, it's
• 01:10:21usually in the context of,
• 01:10:23you know, an adult grandparent
• 01:10:25who had that type of
• 01:10:27support and care involved in
• 01:10:28their final hours and days
• 01:10:29of life.
• 01:10:31Some centers have suggested naming
• 01:10:33the team something other than
• 01:10:35the palliative care team. I
• 01:10:36always
• 01:10:37laugh because at my previous
• 01:10:39institution, I said, you have
• 01:10:40a team named the heart
• 01:10:41failure team unless you take
• 01:10:42failure out of it.
• 01:10:44I'm a board certified in
• 01:10:46palliative care, but it's really
• 01:10:47about taking the time to
• 01:10:49recognize
• 01:10:50what people assume palliative care
• 01:10:52is and then explaining that
• 01:10:54it's an additional layer of
• 01:10:56support
• 01:10:57irrespective
• 01:10:58of the goals or treatment
• 01:11:00options chosen.
• 01:11:02Most people have told me
• 01:11:03that or a lot of
• 01:11:03people told me I have
• 01:11:04a bipolar career
• 01:11:06because I am the intensivist
• 01:11:08at heart who signs up
• 01:11:09for the most critically ill
• 01:11:11patients, and
• 01:11:12I'm a palliative care provider.
• 01:11:14To me, it makes the
• 01:11:15most sense because
• 01:11:16when I'm putting a child
• 01:11:18on ECMO, when we're navigating
• 01:11:20complex surgical decisions,
• 01:11:22the family benefits from really
• 01:11:25total care and support and
• 01:11:27value driven medical care, taking
• 01:11:28the time to understand what
• 01:11:29their values and goals are
• 01:11:30and making sure we're supporting
• 01:11:31that every step
• 01:11:34of the way. Great. We
• 01:11:36have another, question on Zoom.
• 01:11:38Actually, this person has has
• 01:11:39two,
• 01:11:40questions.
• 01:11:41One,
• 01:11:43the question is, are state
• 01:11:44payers more or less likely
• 01:11:45to cover these care options?
• 01:11:46So I I'm interpreting that
• 01:11:47as is there a lot
• 01:11:48of state to state variability?
• 01:11:51And,
• 01:11:52you know, in terms of
• 01:11:53coverage, perhaps if people are
• 01:11:54dependent on, like, Medicaid, for
• 01:11:56example.
• 01:11:58Or alter and and the
• 01:11:59second question from this person
• 01:12:01is how do you handle
• 01:12:02these kinds of discussions if
• 01:12:03the family has lower health
• 01:12:05literacy?
• 01:12:07The funding and paying is
• 01:12:10very challenging.
• 01:12:12Honestly, when it comes to
• 01:12:14dialysis, things of that nature,
• 01:12:16private insurance actually has larger
• 01:12:18gaps in coverage,
• 01:12:20but there still are unmet
• 01:12:22needs all of the other
• 01:12:23ancillary costs. Even if insurance
• 01:12:25is paying for the hospital
• 01:12:26stay or dialysis,
• 01:12:28they're not able to pay
• 01:12:29for all of the home
• 01:12:31health care needs, the time
• 01:12:32off work. The reality is
• 01:12:34it's usually if it's a
• 01:12:35two parent household, one parent
• 01:12:37has to quit their job
• 01:12:39to provide total care for
• 01:12:41meet their child's needs.
• 01:12:43So it is variable state
• 01:12:45to state and then insurance
• 01:12:46to insurance.
• 01:12:47And then the second question
• 01:12:48was related to health literacy.
• 01:12:50Right. How you know, do
• 01:12:51you have a particular approach
• 01:12:53to these discussions when health
• 01:12:54literacy is limited?
• 01:12:57Honestly,
• 01:12:59irrespective of that, before I
• 01:13:02start talking and counseling, I
• 01:13:03try and spend a fair
• 01:13:04amount of time just learning
• 01:13:06about the family. Are they
• 01:13:07visual learners? Are they
• 01:13:10auditory learners? How do they
• 01:13:11process informations? Are they the
• 01:13:14in the weeds, and I
• 01:13:15want to know the data
• 01:13:16from every study or big
• 01:13:17picture, just what does this
• 01:13:18mean for my child and
• 01:13:19family globally?
• 01:13:20And then I tailor my
• 01:13:22counseling approach based on all
• 01:13:24the collective information I have.
• 01:13:28That sounds very wise.
• 01:13:30Any other questions
• 01:13:32from our audience?
• 01:13:36Alright.
• 01:13:37Well, I think we're gonna
• 01:13:38wrap up in a few
• 01:13:39minutes. Oh, oh, we got
• 01:13:41one
• 01:13:42more. Going once, going twice.
• 01:13:44Sorry. Thanks for having me
• 01:13:46on.
• 01:13:47I'm curious if you could
• 01:13:48speak on the nurses role
• 01:13:50at all in all of
• 01:13:51these conversations,
• 01:13:52not as provider, but as
• 01:13:54people in primary care clinics
• 01:13:55as in
• 01:13:57OB offices and in the
• 01:13:58NICU,
• 01:13:59how we can support families
• 01:14:00in these in these processes.
• 01:14:02I always say, especially in
• 01:14:04fetal care, that our nurse
• 01:14:06coordinators become
• 01:14:08the first line and the
• 01:14:09best friends of the families
• 01:14:11because while maybe one, two,
• 01:14:13three time points during the
• 01:14:14pregnancy, we're sitting down and
• 01:14:15meeting with them. They're fielding
• 01:14:17calls every time the family
• 01:14:18has a question or every
• 01:14:19couple weeks calling them, checking
• 01:14:21in on them.
• 01:14:22Same thing in the unit.
• 01:14:24We may stop by the
• 01:14:25bedside a couple of times
• 01:14:26a day. The nurses are
• 01:14:28there for twelve hours at
• 01:14:30a time and really get
• 01:14:31to know the family on
• 01:14:31a much deeper level. So
• 01:14:34I think empowering,
• 01:14:36our nurses too to feel
• 01:14:37comfortable to navigate
• 01:14:39the values,
• 01:14:41goals, start some of these
• 01:14:42discussions with families is invaluable.
• 01:14:45And then I always ask
• 01:14:47them before a care conference
• 01:14:49anything that they've learned about
• 01:14:51the family or always make
• 01:14:52sure if at all possible
• 01:14:53the primary nurse can be
• 01:14:54present because they're seen as
• 01:14:55such a support system for
• 01:14:57that family.
• 01:15:01Great.
• 01:15:03Anyone else?
• 01:15:07Alright.
• 01:15:08Well, thank you again so
• 01:15:10much,
• 01:15:11doctor Corteza. This was just
• 01:15:13a wonderful talk, and and
• 01:15:14we really appreciate your sharing
• 01:15:15your experiences and your ethical
• 01:15:17reflections. And
• 01:15:18it's been it's been great
• 01:15:19to have you, and we
• 01:15:20really appreciate it. Thank you
• 01:15:21so much. Oh, and we
• 01:15:22have a swag bag for
• 01:15:23you.