Understanding the Latino Patient with Cancer

by Beatriz Lorena Hurtado, Bioethics Program Alumna (MSBioethics 2014)

As a Latina working in healthcare I have always felt the responsibility to provide education about my culture, and to clarify cultural differences and misconceptions. It is always surprising to witness how eliminating misconceptions eventually translates into an increase in patient satisfaction, and less apprehension about cultural differences from the healthcare team. This is one of the reasons why, in my view, education on Cultural Competence in healthcare is probably the most appropriate way to avoid generalizations and achieve equality in healthcare.

Latinos currently constitute seventeen percent (17%) of the nation’s population, making them the largest racial and ethnic minority in the US. They are also amongst the fastest growing minorities the United States. Should current demographic trends continue, it is estimated there will be 41 million Latinos in the United States by 2020.

These numbers should not only indicate the rising presence of Latinos in the United States, but also highlight the need for developing pathways to improve language and cultural services in the healthcare arena.

This need is particularly in oncology: as the American Cancer Society notes, cancer is the second leading cause of death for Latinos. It is also important to add that the most common cancer diagnosis in Latino women is breast cancer, while prostate cancer is the most common diagnosis in Latino men (with colon, lung, melanoma, stomach, and liver cancer following closely behind).Therefore, as it happens with any chronic disease, the medical visits are usually recurrent and the treatments involve an extensive group of healthcare professionals.

As a Latina I believe there are three important characteristics of Latino cultural expressions, meanings, and value systems that warrant specific attention:

First, family is the foundation that supports life for Latinos in general. Medical decisions are in most cases a family affair. The presence of family signifies emotional support, empathy, and togetherness, and is always favored in a difficult medical situation. Moreover, if facing a difficult moment or vulnerability, like a cancer diagnosis, family support is at the top of the list of necessities of the Latino patient. Latinos place much of their identity and self-worth into the family structure and customs.

Although it is recognized that the Latin American family has undergone changes in its structure in recent decades, it is important to note that these changes haven’t shifted the sense of group, affective value, and financial support in the immigrant family. Latinos are gregarious, often moving in culturally-defined groups. They also identify themselves within their group and by the role they play in it. Failing to recognize the place family has in medical decisions for Latino patients could be viewed as a lack of acknowledgement of who they are as persons, and their position in the micro universe that is their family life.

Second, in the Latino culture, talking about death is commonly viewed as summoning it. Acknowledging death can be seen as giving up hope, limiting a patient’s chances of surviving and a threat to their recovery. This has obvious implications for conversations about death, end-of-life issues, living wills and advance directives. Also, because of the substantial Catholic background and deep religious roots, most Latinos believe that talking about the possibility of a negative outcome is an expression of limited faith in God. It can symbolize doubt on God’s abilities to heal the sick.

Third, even though Latinos share many characteristics, they are also a very diverse group. They are united in their diversity. For instance, a Latino patient from South America may have a specific cultural response towards the healthcare team (e.g., a more entitled behavior) that may be very different from the cultural response of a Latino patient from Central America (e.g. a more humble and unassuming attitude).

Despite all the similarities that unite Latinos (language, religion, family union, etc.), there are several particular cultural conventions that vary depending on the country from where the person comes. Identifying that the patient may speak Spanish or may come from Latin America represents merely the basic steps in beginning a successful communication, but it does not contribute significantly towards building a strong a fruitful rapport with a Latino patient. To achieve this, establishing a conversation free of narrowly defined cultural assumptions is crucial. Even though Latinos share many characteristics, like the general value placed on family and the inclination to avoid discussions of death, there is a rich diversity of Latino cultures and healthcare providers must make it a point to avoid generalizations.

In the context of the Latino culture, to achieve a culturally competent treatment is to understand their culture and demonstrate respect for their differentiating traits while they are in treatment. This means providing care that recognizes and caters to those cultural differences. By acknowledging their gregarious behavior towards family and group, by attributing their reluctance to plan for the worse to their unceasing hope in their interpretation of death and dying, and by respecting the differences among these common traits, the healthcare team can provide culturally competent care. In turn, this will help the patient feel acknowledged and less intimidated by the medical environment, resulting in a more effective relationship, better care, and better outcomes.

[The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Cheaper by the Dozen

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

As a bioethicist, I appreciate the fact that the American public has become deeply engaged in a number of important health policy debates.

For example, should local, state and national agencies forcibly quarantine travelers coming from countries affected by the Ebola virus? Should public and private companies be required to provide employees with health insurance plans that include oral contraceptives if doing so runs counter to the religious beliefs of the owners? Should terminally ill cancer patient Brittany Maynard have the right to end her own life (which she did this past Saturday)?

One interesting story that slipped under the radar, however, was the recent announcement that two major corporations, tech giant Apple and social networking service Facebook, will now pay for female employees who want to freeze their eggs. These companies will cover the costs of extracting, freezing and storing eggs, even when this is done for non-medical reasons. This is a pretty substantial benefit, as the extracting the eggs can cost $20,000 or more. Storage fees can run an additional $1,000 a year.

This should be up for public discussion and debate. Although many people may disagree with me, I believe that these two companies (and those that follow their example) are making a big mistake. That is not to say that I don’t think that companies like Apple and Facebook shouldn’t provide coverage for fertility-related treatments like egg freezing as part of a comprehensive health insurance plan. They should, but only for medically justified reasons.

The technical name for egg freezing is oocyte cryopreservation, and it is a physically invasive and potentially risky procedure. Women must first take a cocktail of drugs called gonadotropins to hyperstimulate egg production, tricking their ovaries into producing a dozen or more eggs rather than one or two ova that are normally released during the normal monthly fertility cycle. Doctors then insert a long needle through the vaginal wall and into the ovary, sucking out the eggs and preparing them for long term storage.

As you might imagine, this is an extremely uncomfortable procedure. Most women experience bloating and abdominal pain, but more severe side effects are not uncommon. Nearly half of all women will experience a condition known Ovarian Hyper Stimulation Syndrome (OHSS), which may require hospitalization to treat the bleeding and severe fluid buildup that results. Errant needles can cause injury to the bladder, bowel and kidneys. Finally, the ovaries can develop scar tissue at the site of puncture or the drugs used for hyperstimulation can trigger early onset of menopause, resulting in infertility in both cases.

Moreover, while new techniques for freezing and storing eggs have improved to the point where over 90% of all cryopreserved oocytes survive the freeze-thaw process, far fewer of those eggs will lead to a successful birth via in vitro fertilization (IVF). According to the Society for Assisted Reproductive Technology, for instance, the rate of live birth among women aged 30 who used cryopreserved eggs for IVF is less than 25%. That rate drops to less than 10% for women over 40.

These concerns – safety, efficacy, and potential physical risks — are why professional organizations like American College of Obstetricians and Gynecologists (ACOG) and the American Society for Reproductive Medicine (ASRM) only support the use of egg freezing when medically necessary. Egg freezing should be done only as a last resort to protect fertility in women undergoing ovary-destroying cancer treatment, for example, rather than as a way to delay childbearing as a matter of choice.

Unfortunately, the latter is exactly what companies like Apple and Facebook are promoting. Covering the costs of oocyte cryopreservation for non-medical reasons reinforces the idea that professional women must choose between having a fulfilling career and raising a family. Moreover, even if a woman successfully delays childbirth by freezing her eggs, she has only delayed the inevitable. She must still confront a corporate culture that sees mothers as an economic liability.

If companies like Apple and Facebook truly want to support their female employees, they don’t need to pay for egg freezing. What they need to do is provide both female and male employees with the services and benefits necessary for meaningful work-life balance, including paid leave for new biological and adoptive parents, family sick leave, and subsidized daycare and preschool programs. Better yet, they should use their wealth and political connections to lobby our leaders in Washington to make such benefits the law of the land.

Until then, we’re still leaving most working women (and many working men) out in the cold.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on November 6, 2014, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Justina Pelletier’s Less-Than-Sweet 16

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

Justina Pelletier turned 16 over Memorial Day weekend.  She was only 14 when the Massachusetts Department of Children and Families (MA DCF) took custody of her.  She has been hospitalized or institutionalized ever since.  Many of you will be aware that this is a story I have been following closely. If you are new to this tale and need further background on this family please see When Being Wrong is Unacceptable and When Doctors Disagree.

Earlier this month Justina Pelletier was transferred to a facility in Connecticut.  Though her parents still feel she should be home, they have said that this new facility seems to be taking better care of their daughter.  They are allowed more frequent visitation with her and are hopeful that she will soon be home.  Some friends were even allowed to visit and celebrate with her on her birthday.

Even though these are positive developments, the case as a whole is still very concerning.

In March of this year “permanent” custody of Justina Pelletier was awarded to the state of Massachusetts.  Prior to this, Justina’s care was ordered back to her original physicians at Tufts.  Since this case is a diagnostic dispute between the physicians at Boston Children’s Hospital (BCH) and Tufts, wouldn’t this transfer signify that the Tufts diagnosis of Mitochondrial Disorder was being upheld?  And, since the parents had been upheld on which doctors should treat their daughter, why did custody go to the state?  The logic in these decisions is not clear to me.

Shortly after the custody ruling in March the judge’s decision was leaked, trying to gain some additional perspective on the case I of course read it.  The full text can be found here.  My interpretation is as follows:

He made three main points:

  1. Disappointment that Connecticut Department of Children and Families (CT DCF) was unwilling to accept a transfer.
  2. Justina’s diagnosis
  3. Parental bad behavior

Let’s break down what Judge Johnston had to say about each of these issues.

First, the better part of his decision talked about his disappointment in CT DCF for refusing to accept a transfer of Justina.  He noted in his decision that CT DCF had investigated the Pelletiers and found that the home was an unsuitable environment for Justina (the Pelletier family claims the opposite).  Personally, I found the incessant mention of the CT DCF denial by Johnston to be (for lack of a better word) whiny to the point of ridiculousness and redundancy.  To be frank, I expect legal documents to be more professional and less petulant.

However, all that being said, I don’t understand why Connecticut is refusing the transfer.  I assume it is to avoid media attention and responsibility.  If they were to accept her, she would be closer to home and if (as the Pelletier family states) CT DCF in fact found no problem with the home, why not accept the transfer and release her to the custody of her parents?

Regarding the diagnosis, Judge Johnston states that there is a large amount of psychological and medical evidence to prove that Justina suffers from Somatoform disorder.  However, as mentioned above, his order to transfer her care back to her original physicians at Tufts is contradictory to this statement.  The Tufts physicians diagnosed Justina with Mitochondrial Disorder and will certainly treat her in accordance with their diagnosis.

The last belabored point in the decision, was a discussion of the parents’ poor behavior.  Interestingly, everything noted as poor behavior and the reasoning for removal of custody happened after Justina was initially placed in state custody.  The document states that the Pelletiers were:

  • Verbally abusive to BCH staff
  • Approaching other families at BCH and telling them that the hospital was kidnapping children
  • Threatening institutions that were planning to accept Justina as a patient
  • Contacting the media
  • Changing their minds about accepting a transfer to CT DCF upon the advice of new legal counsel.

To me, much of this seems like behavior that is par for the course when someone has been unnecessarily stripped of their parental rights and are grasping at straws to have their child returned.  I don’t deny that the behavior is rude, but being rude is not a reason to lose your parental rights.

Consider these parents: their daughter has been taken by the state of Massachusetts, they are extraordinarily limited in when they visit her and what can be discussed, they see her health declining and can do absolutely nothing to help her.  How calm and pleasant would you be if it were your child?

The bottom line is: judgment on whether or not a home is fit for a child should be based on facts about the home life.  Rude or uncivil behavior by the parents after custody has been removed from them is irrelevant and should be expected from any loving parent, as much as we would expect a mother bear to attack if she felt her cubs were threatened.

I am disappointed at the lack of consistency and logic I see in the decisions made by Judge Johnston.  If any of my more legally minded readers can shed light on this for the rest of us I welcome your insight, please leave a comment below.  As always, I will continue to watch and write about this case.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on May 31, 2014. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Being Wrong is Unacceptable: The Continued Saga of Justina Pelletier

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

Alright, as many of you certainly know I have developed an addiction to the Justina Pelletier case.  I promise someday I will write on another topic, but today is not that day.  If you haven’t been privy to my latest obsession please see: When Doctor’s Disagree.

An opinion I hear for too often is that this is a “conservative” story, driven by “conservative” groups and media.  I don’t understand this claim, how is a story about parental rights only a conservative issue?  What if Boston Children’s Hospital (BCH) did overreach on this family, the Massachusetts Department of Children and Families (MA DCF) rubber stamped this case, and the court showed bias toward MA DCF in their decision, wouldn’t that be important to parents of all political beliefs?

As I have said in every article about Justina, we need to remember that we are only seeing half of the story.  Because of this we do need to be a bit skeptical and cautious in forming an opinion.  Though, it seems that there is enough of a question to keep watching this story.  The best thing to do is investigate with an open mind and a calm nature.

There are two main opinions on DCF swirling around this case.  The first comes from those who side with BCH and believe that the hospital and MA DCF are justified and must certainly have evidence against the family that they are unable to share due to privacy laws.  This opinion is represented well here.  The article reminds us to not lose all faith in the medical community because of this story and that the vast majority of providers are appropriate at BCH, even if this story is true.   Pediatric providers have a deep love for their profession and a passion to help the children in their care.  Cases like Justina’s can make us lose sight of this and develop an irrational fear of pediatric medical professionals.   We must not allow our concern in this case to shape our judgment of all pediatric clinicians.

The second opinion is one that is very critical of child protection departments throughout the country.  An article explaining this case and the inadequacies of child protection services in general can be found here.  The author explains how child protective services employees often develop the idea that most parents will abuse their children and even a whisper of possible abuse should be acted on with the removal of the child.

At this point I want to clarify a part of my opinion that I realize may not yet be clear.  Though I feel that there may have been overreach by the state of Massachusetts in Justina’s case, I do not believe the goal of MA DCF, BCH, or their employees has been to harm this girl.  I believe every person in this case is working for what he/she feels is in Justina Pelletier’s best interest.

I work in pediatrics currently and frequently disagree with choices parents make for their children, but my respect for the institution of parenthood reminds me that people are entitled to make choices for their children that I consider wrong.  It is only in the direst of circumstances that anyone is entitled to intervene.  It is not always easy, but I remember that my view is merely a snapshot and that parents have the right to raise their children as they see fit.  Even if their home isn’t perfect (keep in mind that no home is), we must consider the harm done by removal versus the harm (or potential harm) done in the home.

Unfortunately, it doesn’t appear that this evaluation is always done appropriately.  The reality is that there is always harm done to a child when removed from their parent’s custody.  Sometimes, it is warranted, but should be a last resort because of the psychological turmoil removal has on the child.  When removing parental custody, it is absolutely and ALWAYS unacceptable for DCF to be wrong!

Anyone who works for child protective services should work under a constant fear of being wrong, as deeply as or even more deeply than the medical community fears mistakes.  The responsibility given to those who work for DCF is intense and workers should feel the weight of that responsibility.  It is unacceptable for these agencies to become reactionary, ie remove a child too quickly and find proof for the removal later.  I am not saying that this happened here, though we must admit it as a possibility.  I am trying to make the broader point that DCF should be under the strictest regulation, and that the burden of proof should be on their side for removal of a child.  The bar should be set high, weighted always on leaving the child with their natural family unless serious and imminent harm is certain.

Since we have said that a harm comparison should be done, let’s use the information we have in the Justina Pelletier case to compare her life with Mom and Dad vs. her life in DCF care:

Life with Mom and Dad

–        Participated in social activities (figure skating)

–        Attended and enjoyed school

–        Frequent medical appointments (possibly unnecessary)

–        Frequent medical procedures (possibly unnecessary)

–        Many medications (possibly unnecessary)

–        Family structure intact

Life in MA DCF Care

–        Over a year in institutions

–        No schooling (alleged by the family)

–        Deterioration of overall health and physical appearance (assessed by pictures and family report)

–        Less medical procedures (that were possibly unnecessary)

–        Fewer medications (that were possibly unnecessary)

–        Family unit and child’s normal support system fractured

It has also been alleged that Justina has not been allowed to participate in elements of her faith that are important to her.  If the parents are medically abusing their daughter this certainly needs to be dealt with, but to add intellectual, emotional, physical, and psychological harm to this child under DCF care is not the way to handle it.

Remember that there are respected physicians who have cared for this child for years and feel she has Mitochondrial Disease and that the family has appropriately dealt with this diagnosis.  This case is not cut and dry, one respected physician’s opinion is in direct opposition to another and a child’s care and wellbeing hangs in the balance.

I have said it before and will say it again: It is unacceptable to be wrong.  In any DCF case there should be a harm analysis and abuse, willingly or unwillingly inflicted by the government agency on the child needs to be addressed and appropriately handled.  It does no good to move a child from a potentially harmful environment into a definitely harmful one.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on April 20, 2014. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

 

When Doctors Disagree: Parental Rights and Disputed Pediatric Diagnoses

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

What happens when doctors disagree on a pediatric diagnosis? What are the parents’ rights in a diagnosis dispute? Do they have any?

Many readers will be familiar with the story of Justina Pelletier, a 15 year old Connecticut girl diagnosed with Mitochondrial Disease by Dr. Mark Korson at Tuft’s Medical Center . In February of 2013 Justina developed the flu, Dr. Korson suggested that the family take Justina to Boston Children’s Hospital (BCH) to see her gastroenterologist who had recently moved to BCH.

When the family arrived at BCH they were told they would not be allowed to see the gastroenterologist, the staff at BCH quickly changed Justina’s diagnosis from Mitochondrial Disease to Somatoform Disorder, a psychological condition that manifests in physical symptoms. They stopped all of her medications and moved her to the psychiatric ward of the hospital. When the parents objected and said they were going to return their daughter to her doctors at Tufts the hospital made allegations of medical child abuse and the Massachusetts Department of Children and Families (DCF) took temporary custody of Justina. The parents have been fighting to regain custody ever since.

The theme of the many, many court dates has been postponement, but a decision was finally made last week. Judge Johnston granted “permanent” custody to DCF. This ruling cannot be reviewed by the court for 6 months, the judge backdated the decision to December, so the family’s next court date is May 25th, 2014.

In January, Justina was moved to a non-medical psychiatric facility. The average stay at this facility is 2 weeks or less, she has now been there over 2 months. Her family feels that this is a dangerous environment for Justina. According to her father, Lou Pelletier, before developing the flu last year his daughter was a typical active teenager, she handled her chronic illness well and enjoyed activities such as figure skating. By the time she was moved to this non-medical facility in January 2014, she was confined to a wheelchair barely able to walk.

The family’s position is that Boston Children’s Hospital and Massachusetts DCF have kidnapped their daughter and are neglecting her medical needs to a point that her life is in imminent danger.

Lou Pelletier has been on a media campaign to raise awareness of his daughter’s condition and situation. The family’s last big media appearance was on the Dr. Phil show about two weeks ago. The episode was well done and featured opinions from many experts on custody battles. The overarching theme was that any custody case involving the state should focus on creating a safe environment at home so the child could return to the family. This is done through investigation of the home and family life, counseling, education, etc. basically whatever is necessary to reunite the child with his/her family. According to the Pelletier family no investigation has been done and they do not feel that Massachusetts DCF has any intention of working to return custody of their daughter.

The trouble with this story is that we only have the Pelletier family’s side, DCF has remained extremely tight lipped, making very few statements regarding the case, none that have been particularly informative or helpful. From all appearances the family is calm, together, medically literate, and rational. I recognize that their side of the story is certainly biased and we must keep that in mind, however with the silence from DCF, lack of criminal charges toward the parents, and drastic difference in this girl through photos from this year and last, the family’s story appears to be credible.

A few weeks ago Judge Johnston ruled that Justina’s medical care be transferred from Boston’s Children’s Hospital back to Tufts. This was considered a win for Justina’s family, and the parent’s called to help facilitate Justina’s appointment with Dr. Korson. Massachusetts DCF refused to take Justina to Tufts prior to this most recent decision, it remains to be seen what they will do now that they have been granted custody.

One of the things I fail to understand in this case is how BCH could override the diagnosis from Tufts and because they make a new diagnosis have grounds to remove this child from the custody of her parents. What are a parent’s rights in healthcare situations? Do they have the right to decide: who treats their child, which doctors to trust, or whether to seek a second opinion?

A key player in the new diagnosis of Somatoform Disorder was Simona Bujoreanu, PhD. Somatoform Disorder takes a very long time to diagnose, before a diagnosis can be confirmed the physician must rule out any possible medical cause. Physicians at Boston Children’s Hospital allegedly diagnosed Justina with Somatoform disorder in just 12 hours.

I think it is important to focus on Dr. Bujoreanu because of an article she wrote a few years ago. The article is titled: “Approach to Psychosomatic Illness in Adolescents.” Dr. Bujoreanu claims in this article that “20-50% of all patients complaining of physical symptoms can be categorized as having medically unexplained symptoms.” As the article goes on she seems to claim that psychosomatic diagnoses are a catch-all for these patients with symptoms that cannot be immediately medically explained. She makes broad strokes about what can be considered psychosomatic and does not focus on how time consuming a diagnosis like this should be. She talked about how families may react badly to a psychosomatic diagnosis, but did not stress how careful a psychologist should be in making the diagnosis.

In Justina’s case her physical symptoms had been explained by a diagnosis of Mitochondrial Disorder, the doctors at Boston Children’s Hospital simply rejected this diagnosis. I think doctors need to be extremely careful when countering the diagnosis of another physician and if the new diagnosis is psychosomatic even more time and evidence will be needed.

The decision of the judge this week was very disappointing. The family has been investigated by Connecticut Department of Children and Families and nothing was found. Connecticut Department of Children and Families has repeatedly turned down a transfer of Justina to their custody, presumably because they have previously cleared this family. I also feel very strongly that before a child is placed in “permanent” foster care against the express wishes of the family, some sort of criminal charges should need to be filed against the parents. I am frankly appalled that something like this could happen in America.

Parents should be allowed to disagree with a diagnosis and to have their child treated by the medical professional of their choice. If the child is in danger of abuse or neglect by a family member criminal charges should be filed along with the request for custody by the hospital or state. I am a very strong advocate for parental rights, and believe that excepting extreme cases custody of and decisions for children should remain with the parents. Parents need to have defined rights in medical situations, perhaps this case can motivate us to more plainly secure parental rights when a child is ill. I have said it before, but will stress it again, I am shocked and saddened that removal of a child from her family like this does not have to be associated with criminal charges against the parents.

I have so much to say about this case and I am sure I have not typed my last on this story. I was glad to hear that the family plans to continue the fight at the appellate court level. I will be following this closely as it develops, I hope you will as well. More to come …

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on March 31, 2014. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

The Concept of Brain Death and the Tragic Cases of Marlise Munoz and Jahi McMath

This guest post is part of The Bioethics Program’s Online Symposium on the Munoz and McMath cases. To see all symposium contributions, click here.

by Ryan Abbott, M.D., J.D., M.T.O.M.
Associate Professor of Law, Southwestern Law School, and Visiting Assistant Professor of Medicine, David Geffen School of Medicine at UCLA

Historically, death has been a very simple and intuitive thing to understand – it occurs when someone stops breathing and their heart stops. Visually, it is a dramatic change that anyone can comprehend.

However, we now live in an age where machines can keep people breathing, and their hearts beating, when they would otherwise die. These medical advances have been revolutionary, and they are vital to allowing living patients to recover after severe illness or injury. On the other hand, they can make it more difficult for people to accept and understand death, because it can make dead patients “appear” alive.

Brain death refers to the irrevocable loss of all functions of the brain, including the brainsteam. Someone with brain death is just as dead as someone who has stopped breathing and whose heart has stopped. Doctors confirm brain death through a neurological examination, and once diagnosed the patient is dead. That person will never have any brain functioning and will never return to life or “wake up.”

That, of course, is a difficult concept to explain to people without medical training, and who don’t understand how the brain and body work. To family members, a loved one with brain death on life support has some of the features they associate with being alive. For example, a video now circulating online that purports to show Jahi McMath responding to stimulation may simply demonstrate that some reflexes may persist after brain death, such as a Babinski’s reflex that causes the big toe to move upward while the other toes fan out in response to the sole of the foot being firmly stroked. Grieving family members are, understandably, sometimes unable to accept a diagnosis of brain death.

Continue reading

Physician Authority to Make the Determination of Death: Why It Matters

This guest post is part of The Bioethics Program’s Online Symposium on the Munoz and McMath cases. To see all symposium contributions, click here.

by James Zisfein, M.D.
Chief, Division of Neurology, and Chair, Ethics Committee, Lincoln Medical Center

Why does it matter, to those of us involved in clinical ethics, that physicians are losing the authority to determine that a person has died?

I offer several reasons, in increasing order of importance:

Firstly, there is the (wasted) financial cost of maintaining dead people in critical care beds. However, even with the loss of physician authority to determine death becoming more common (due to publicity surrounding the Jahi McMath case), this cost is but a small fraction of our national health expenditures.

A more important reason is damage to professional integrity. The damage cannot be easily measured, but it’s real. The most bitter complaint I hear from critical care nurses is regarding their wasted efforts to prolong the lives of the imminently dying, and how that infringes on their time available to help patients with a chance to recover. (I don’t think they’ll be much happier ministering to the already dead.) And we have to also acknowledge the feelings of us neurologists and intensivists who use our extensive training and skill to make a correct determination of death only to see it nullified by angry but ignorant families, inept hospital administrators, and [unprintable] court rulings. Personally, it makes me wonder why the hell I’m doing this.

Thirdly, there will be inevitable loss of transplantable organs. As more and more families doubt the accuracy of determinations of death and assert dubious religious objections, and get supported by courts, there will be more and more lives lost on transplant waiting lists. It is already a far too common heartbreak when a child or young adult dies from liver failure, and the death could have been prevented. Prepare for a lot more heartbreak.

But the most important reason for allowing physicians to do their jobs — to determine death properly by medical standards — is for the sake of bereaved families. They have already suffered a tremendous loss, and introducing doubt about the fact of death or possibility of recovery does not change the outcome. It only intensifies and prolongs their anguish.

That’s why I think it matters. Any other takers?