Disclaimer

Let me state on the onset that I do not condone Dave Chappelle’s comedy.  His humor is often laced with grotesque profanity and lewd commentary that makes me uncomfortable.  We fundamentally disagree on our world views, but there is something to be learned from his messages.

Dropping The Bomb

In 2003, comedian Dave Chappelle enjoyed the benefits of having a hit show on Comedy Central.  Chappelle’s Show put Comedy Central on the map.  DVDs of the show sold 1.2 million copies in one week, becoming the biggest selling DVD tv show in history.  As the show’s ratings and Chappelle’s popularity climbed, the consensus was that Chappelle’s Show would be a mega-hit for years to come.   However, in 2006, Chappelle dropped a bombshell and walked away from his show and a contract worth over $50 million because of ethical and business concerns.

Chappelle explained his action to Oprah Winfrey when he said,

“I wasn’t walking away from the money.  I was walking away from the circumstances.” 

Chappelle explained the circumstances of having a hit show in Hollywood and his sudden departure from it when he said, “It’s incredibly stressful.  When you’re a guy that generates money, people have a vested interest in controlling you.”

In his performance, The Bird Revelation, Chappelle compares his experience in Hollywood to how a pimp controls prostitutes.  Hollywood used and abused Chappelle and tried to control him to turn the most profit.  That is why Chappelle walked away from millions of dollars.  

Medical Ethics

In medical ethics, specifically research ethics, researchers are not permitted to use participants solely to advance the research interest.  Participants are not a means to an end but an end of themselves.  Performing research without regard for the participant’s health is exploitation.  Dave Chappelle, like many other performing artists, was exploited.

Years later, Chappelle returned to the limelight and tried to make things right.  In one instance, ViacomCBS, the parent company of Comedy Central, licensed the Chappelle’s Show to Netflix and HBO for millions in profit without providing additional compensation to Dave Chappelle.  Though disgruntled, Chappelle admits that legally he had no recourse.  He had signed a contract.  But Chappelle admits he was young, inexperienced and realizes now how much executives took advantage of him.

“I forgot the hostility of the environment of show business.” 

Legal v. Ethical

Licensing his show was legal, but from Chappelle’s perspective, unethical.  As a result, Chappelle went on social media and begged his followers to boycott his unethically licensed show.  He also expressed his disappointment to Netflix and Comedy Central.  Chappelle’s pleading made a difference.

Netflix agreed to pull the Chappelle show and also gave Dave several Netflix specials.  Comedy Central also sat down with Chappelle and discussed a mutual agreement.  Finally, Chappelle signed another contract.  This one was worth $60 million.

Kudos to Dave Chappelle for calling out the unethical behavior of big corporations in Hollywood.  And kudos to the representatives of Comedy Central and Netflix for finally listening to Chappelle and making amends.  Just because something is legal does not make it ethical.  Chappelle learned this the hard way but came through more assertive on the other end.  Exploitation is never ethical and people should never be used as a means to achieving a desired end.  Let us all behave the way we ought and treat others with the dignity and respect they deserve.  And let us remember that just because something is legal does not mean it is right.

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Sherry’s Heavy Burden

Sherry sat alone in the conference room and faced an impossible task:  deciding when to disconnect her father from the ventilator.  Most people in her situation show signs of shock or lose control of their emotions, both of which are entirely understandable.  Sherry, on the other hand, exhibited neither shock nor emotions.  She was calm, even stoic.  Her auburn hair, clothes, and posture resembled someone of nobility from the Victorian era.

Sherry’s father, Howard, had end-stage lung cancer.  All attempts to quell the disease had proven unsuccessful and had rendered Howard’s body of any immune system.  Now, Sherry’s father had developed pneumonia and could not breathe adequately enough without a ventilator’s support.  Unfortunately, medicine could do nothing more. 

Sherry accepted this news, reviewed the medical situation, and sat silently.  She could not bring herself to decide to let him go.  She struggled with the thought that she would forever bear the guilt of “killing” her father.

“Tell me about your father,” I asked to break her silence.  Sherry’s eyes lit up.  She burst into story after story of how her father took care of everything:  finances, the house, the family.

“He was always serving others,” Sherry explained.  “After he was diagnosed, he said he never wanted to be a burden on anyone and did not want to be sustained on a ventilator.  He wanted to pass away naturally.”

“It sounds like your father already made this decision for you,” I claimed.  Sherry looked up with an epiphany-like look on her face.  Sherry did not need to make a decision.  Her father had already made it for her.  She wouldn’t be “killing” her father.  The illness would.  But Sherry needed one more thing to rid herself of the emotional trauma that such a decision would have on her:  permission.

Caregiving Solution

What Sherry needed, and what many of our patients and families need, is permission.  They need permission to grieve, permission to let go, and sometimes permission to communicate.  As caregivers, one of the most powerful tools at our disposal is providing our patients the means and opportunity to do things they are hesitant to do.  During a crisis, patients and their families carry burdens of guilt, indecision, and confusion.  For Sherry, she needed permission to follow what her father wanted her to do.  But she could not give it to herself.  The burden of guilt would have been too significant for her.  Permission had to come from someone else.

Caregivers give patients and families permission by being silent, telling them what they need to hear, and actively listening (see how to actively listen here).  Permission should always be given with gentleness and compassion, which conveys respect, builds trust, and decreases burnout in caregivers.  

Improve your caregiving and decrease burnout with a 1-on-1 conversation.  Find out what happened to Sherry here.

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Is it possible to be alive AND dead at the same time? You may be surprised at the answer in the latest Vlog!

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Spring Boarding Physician-Assisted Suicide

Following in the footsteps of Nancy Cruzan’s “right to die” case, a group of physicians argued that if patients have a right to refuse life-sustaining treatments, then they should have a right to request life-ending treatments.  In Vacco v. Quill, Dr. Timothy Quill et al. claimed that prohibiting patients the right to assistance in dying was unconstitutional and violated the Equal Protection Clause.  In 1997, the Supreme Court disagreed.  According to the ruling, patients do not have a “right to die.”  Moreover, refusing treatments and requesting assistance in dying (arguably a type of treatment) is not the same thing.  Much like the criminal code where manslaughter differs from murder, refusing life-sustaining treatments and requesting assistance in dying may have the same outcomes, but there is a difference in causation.  The intention behind the act matters.

Today, nine jurisdictions have approved Physician-Assisted Suicide (PAS):  eight states and Washington, D.C.  Some states have laws against PAS and several other states have pending PAS legislation.  State laws vary because the federal government has passed legislative authority to the states.  Each year there are numerous PAS state bills proposed in state legislation, but passing bills takes years to accomplish.  Moreover, many bills never make it through the vetting process.

Many opponents argue that relief from pain is not a legitimate reason for permitting assisted suicide.  Fair enough, but relief from pain is far from the main reason why people choose the PAS option.  In Oregon, the number one reason why people opt for PAS is to maintain autonomy (96%).  Only 30% of people included pain as a factor in their decision-making.

Unsupported Reports

Opponents of PAS describe the consequences of enacting such a law.  Describing the recent legislation passed in New Jersey, the Heritage Foundation stated:

“In this scenario, it is the poor, the uneducated, and the socially marginalized who are most likely to be pressured into taking their own lives. These are the same populations who are the least likely to have someone else advocate on their behalf for proper care.”

However, the data doesn’t support this accusation.  In Oregon, over 95% of participants are white, half have an Associates Degree or higher, and the majority (59%) are over 65.  A far cry from the poor, uneducated, and socially marginalized individual demographic.

The Heritage Foundation further states:

“As the demand for end-of-life care continues to increase, physician-assisted suicide emerges as a cheap alternative to appropriate palliative or hospice care.”

But the data indicates that 91% of patients who opted for PAS in Oregon over the last twenty years were enrolled in hospice at the time of their death.

Semantic Gymnastics

According to the Death With Dignity National Center – an organization devoted to promoting death with dignity laws, using the term ‘suicide’ is “inaccurate, biased and pejorative…hurtful and offensive.”  Thus, terms like Physician Aid in Dying or Medical Aid in Dying are “value-neutral” and should be used as replacements.

How is it inaccurate?  People who opt for PAS in the United States must be able to self-administer the medication, otherwise, it is considered a criminal act.  The definition of suicide is the act or an instance of taking one’s own life voluntarily and intentionally.  The fact that they are in the dying process (technically from the moment we are born, we all fit in this category) does not change this.  We can’t arbitrarily change the definition of words to justify our agendas.

And whose values do we want to be neutral?

Necessary Considerations

Since Canada’s End of Life Option inception in 2018, 2500 patients have chosen the option.  However, the line between PAS and Euthanasia in Canada is blurred.  There is no distinction between the two, legally.  Interestingly, out of the 2500 patients, only one has chosen to self-administer the medication.  The rest have chosen to have a clinician administer the drug.  Thus, 99% of Canadian patients chose euthanasia over suicide.  Why?  Is this just to ensure the administration of the drugs is done properly, or are there other reasons?

I think one of the motivating factors with this issue is validation.  If a physician prescribes a drug for me to end my life, then it validates my rationale to commit suicide.  But why do we feel the need to validate our feelings?  What role, if any, does guilt play?

Compassionate Caregivers

Health care providers often assume the burden of making difficult decisions for their patients.  That’s compassionate care.  Telling a family there is no hope of recovery for their loved one (i.e. the patient is dead by neurological criteria) and recommending that all interventions be withdrawn or withheld eases the burden of family decision-making.  Easing suffering is one of the most compassionate acts caregivers can perform.  I can’t help but wonder if seeking the PAS option is another way of patients asking physicians for this burden to be lifted.  A prescription for medication to end a life not only provides the patient validation but also communicates that their life may be better off ended.  The question is, Are there instances where death is a better alternative?

I’ve treated many patients at the end of life, and I sympathize and empathize with their suffering.  It is almost unbearable to watch your loved one suffer and families don’t want to live with the idea that they were a part of causing the death of their loved one.  Though the feeling is not accurate (as it’s the underlying disease that causes the death of the individual), the feeling remains.  There are many options to assist families at the end of life.  The push for PAS tells us that we are not meeting the needs of many of our patients.  The fact that many PAS patients enroll in palliative and hospice care tells us that, at minimum, we need to do better job in these areas.

References

1.  Oregon Health Authority, DWDA, Year 21, 2018
2.  Burke, Monica, Physician Assisted Suicide Comes To New Jersey.  Here’s Why It’s Badly Misguided, 4/19/2019.  https://www.heritage.org/life/commentary/physician-assisted-suicide-comes-new-jersey-heres-why-its-badly-misguided
3.  Oregon Health Division 1998-2015
4.  https://www.merriam-webster.com/dictionary/suicide

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What Is The New “Abortion” Bill in New York?

On January 22, 2019 (exactly 46 years to the date after the Roe v. Wade decision) the state of New York introduced revisions to its Reproductive Health Act. The bill removes abortion from the state’s criminal code and permits women to abort their child after 24 weeks when fetal viability is absent or to protect the patient’s life or health (previously abortion was classified as a homicide after 24 weeks of pregnancy).

Are There Any Other Bills Being Introduced?

Not to be outdone, legislatures in Virginia proposed a bill (HB2491) in early January that would permit abortion up until the moment of birth provided one physician (previously 3 MD’s were required) determines the pregnancy threatens the life or “impairs the mental or physical health” of the mother.  On January 28, 2019, legislators voted 5-3 to table the bill for now.  Similar bills exist in Rhode Island and at the Federal level.

What Does Fetal Viability Mean?

Fetal viability is the ability of the fetus to exist ex utero (outside the mother’s womb) with technological support.  It occurs approximately 24-28 weeks gestation and was used in the Supreme Court Case Roe v. Wade to define when the State should regulate abortion. 

Is The Fetus Alive?

In 1857, the American Medical Association Committee presented a report deploring abortion partly because of the persistent ignorant belief that the fetus is not alive until after quickening (the first recognizable movement of the fetus in utero, usually around the16th week).  Medical technology and embryology have proven that at the moment of fertilization, the fetus is alive.

Does A Fetus Have Rights?

In Roe v. Wade, the Supreme Court ruled (many other lower courts followed) that embryos (fertilized eggs) including the unborn are not considered persons for purposes of the Fourteenth Amendment (denies states from providing life, liberty, or property to any person).  However, the State does have a significant and legitimate interest in protecting potential life which begins at the point of viability (see above), and thus legal protection may be extended.

Doesn’t The Physician Have an Ethical Obligation To The Fetus?

Physicians have obligations to treat patients.  The fetus only becomes a patient when a pregnant woman presents herself to the physician for clinical care after the moment of viability.  Before viability, the fetus becomes a patient only as a function of the pregnant woman’s decision to become a patient which confers the status of a patient to her fetus.

Other Questions That Need Answering

Why The Need For New Legislation?

This question raises other questions.  Previous laws provided safeguards for women who were considering abortion:  requiring ultrasounds, waiting period, the need for abortions to be performed in a state-sponsored hospital, etc.  Even those believing that abortion does not take an innocent life understood that ending a pregnancy can be traumatic on the mother and the father.  Setting aside whether or not a fetus is a child for a moment, why the need to expand the law?  Were there multiple women who were suddenly, after 9 months of pregnancy, caught off guard with a fetus in their womb?  I know there are instances where pregnancy has caught women by surprise but does this warrant legislation?

Moreover, the legislation in New York and Virginia stipulate that abortion should be permitted if the pregnancy “impairs” the health of the mother.  Why call the carriers of these “non-persons” mothers?  And why the need to abort the child?  If the health of the mother is at stake, then deliver the baby.  Is there any medical instance when it is more beneficial to abort a child than to induce delivery?

The Fundamental Question That Needs Answering:  Is The Fetus A Person?

Current legislation has once again demonstrated how arbitrary is the term viability.  The main reason for the controversy is because we are trying to answer a philosophical question with science.  For example, Neonatal Intensive Care Units provide critical care to compromised children.  Many of these children are born premature (before 37 weeks).  The earliest premature baby to survive was born at 21 weeks four days.  How can a non-viable fetus (before 24 weeks) survive?  What is it about the 23rd week, 23rd hour and the 59-minute moment that marks the end of being mere tissue and the beginning of being a person?

As noted above, the unborn are not considered persons under the law, but their protection is granted after 24 weeks gestation.  New York legislation omitted that protection and the Virginia bill was close to doing the same.  In a hearing in Virginia, delegate Kathy Tran, one of the introducers of the bill, stated that the bill would permit abortion of a child even up to the moment when the mother is dilating.  Evidently, Tran and other proponents consider the several inches between the birth canal and the hospital delivery room to be the defining line to being classified a person.  The message is:  Personhood is defined merely by location.  However, if the birth canal obstructed the birth of the baby to the point where only the head had exited (shoulder dystocia), would the child be a person only from the neck up?

Greg Koukl put it most succinctly when he said, “If abortion does not take the life of an innocent human being, then no justification for abortion is necessary…If it [abortion] does take the life of an innocent human being then none of the justifications given for abortion are adequate.” Video

Bottom Line

Defining personhood is critical because of the weight that the definition confers.  Persons have legal, ethical, and moral status.  Persons have this status because they are human beings with intrinsic value.  States are obligated to protect this value.  Fundamentally, these bills redefine personhood and seem to make abortion more of a decision of convenience.  But if society can’t agree when a fetus becomes a person shouldn’t we err on the side of caution?  What other issue is more deserving of this safeguard?

Final Note:  Every four years people yearn for a leader who will have integrity, morality, and do what’s best for the country without regard to their political status.  I can’t help but wonder if that future leader who could help galvanize a divided nation was one of the 1.5 billion children whose lives were stolen through abortion across the globe since 1980.  

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The Beginning of the Jahi McMath Story

I recently posted on the tragic events surrounding the Jahi McMath case (here).  Three days after undergoing a routine tonsillectomy and adenoidectomy, 14-year-old Jahi McMath was declared dead by neurological criteria.  Two independent tests confirmed the results.  When you go into the hospital and have any procedure, no matter how routine it may be, the physician always informs you that there is a remote possibility that something could go wrong.  Unfortunately for Jahi, something went wrong.  She suffered a cardiac arrest and a severe anoxic brain injury.  Such a tragedy, such a loss.  That was in December 2013.  But that was not the end of the story.  It was just the beginning.  There are two criteria used to determine if someone has passed away.  The first is death by cardiac death (DCD), i.e., your heart stops functioning.  The second is death by neurological criteria (DNC), i.e., your brain has the lost the ability to function.  Jahi was declared dead by DNC.  All fifty states accept both criteria, but only New Jersey allows a family to refuse to accept DNC.  That is the road the McMath family took.  They moved from California to New Jersey where a mechanical ventilator sustained Jahi’s heart and lungs.

The Ethical Wake of Mechanical Ventilation

The mechanical ventilator is one of the most amazing technological advances in medical history.  Vents have saved countless lives, from the first tank respirator produced in 1832, to the “iron lung” ventilators used during the polio epidemic in the 1920s and 1930s, and to the modern positive pressure ventilators we use today.  They have treated patients with an array of conditions from Polio to Emphysema.  But they have also created artificial conditions in a small population of people. Ventilators can assist compromised, weakened lungs or take the place of chronic, diseased lungs.  They can also substitute for a cardiopulmonary system that receives no signal from the brain to function.  A new type of patient has emerged because of this technology:  one who has no functioning brain, no consciousness but has functioning heart and lungs. If someone suffers a catastrophic brain injury, the brain no longer sends the appropriate signals to the rest of the body to maintain its function.  Thus, all of the rest of the body’s organs fail.  That is if something doesn’t step in and take their place.  Enter the mechanical ventilator.  With proper oxygenation and ventilation, the heart continues to pump, and the rest of the body’s organs and tissue can maintain homeostasis, to a point. Severe brain injuries are complex problems.  The severity occurs on a spectrum.  People can be in a minimally conscious state, a coma, or in a necrotic “brain death” state as a result of their injuries.  Interestingly, the brain can heal itself to a certain extent.  As a result, some patients have moved from one state to another.  But the more severe the injury, the less likely of any recovery.

Drawing The Proverbial Line:  Harvard 1968

I recently attended the annual Harvard Bioethics Conference in Boston which had as its theme:  Defining Death:  Organ transplantation and the 50-year legacy of the Harvard report on brain death.  It was in 1968 when an ad-hoc committee at Harvard proposed including neurological criteria as another basis for determining death.  The impetus for such a proposal remains somewhat controversial.  Some suggest that adding neurological criteria to diagnosing brain death was to facilitate organ transplantation.  Undoubtedly, this addition would significantly affect organ transplantation but according to Gary Belkin the primary justification was to add another criterion to respond to the hopeless cases of those in an “irreversible coma.”  A physician’s priority is not to harm, yet patients could now exist in a perpetual state of unconsciousness because of mechanical ventilation.  There needed to be a line that separated acceptable medical practice and unacceptable experimentation.  This “brain death line” became that division.

The Ending of the Jahi McMath Story

A mechanical ventilator and tube feedings sustained Jahi McMath for 4 ½ years.  She had at least three menstrual cycles.  She physically grew, and she had some volitional movement.  As a result, in 2017 Dr. Alan Shewmon, Professor Emeritus of Pediatrics and Neurology at UCLA declared that Jahi fulfilled the requirements of being in a minimally conscious state.  In other words, in 2013 Jahi met the standards for being declared dead by neurological criteria but in 2017 she did not.  Thus, technically, she was “dead,” and now she was “alive.”  The McMath family sought litigation attacking the legitimacy of the DNC criteria.  The courts would decide whether Jahi was alive or dead.  If she was declared alive, it would be the first case to reverse a death declaration.  A judge approved, and the case was scheduled to begin in February 2019.  But the case will not take place.

Toward the end of June 2018, Jahi McMath was removed from the ventilator in a New Jersey hospital after suffering what seems to be massive blood loss following exploratory surgery.  Staff attempted to resuscitate Jahi but were unsuccessful.  She was declared dead by DCD on June 22, 2018.  After reflecting on her rationale for moving her daughter to New Jersey, Jahi’s mother stated, “My daughter was not brain dead or any other kind of dead…”

The Sad Irony of Jahi McMath

The 1968 Harvard committee’s proposal of adding neurological criteria to a diagnosis of death was to prevent unnecessary harm to an artificial group of patients and their families created by mechanical ventilation.  Unfortunately, that is what happened to Jahi McMath and her family.  They all suffered from countless sleepless nights, anguish, guilt, and the millions of dollars spent on sustaining Jahi after a horrible tragedy.  This situation was what the Harvard Committee wished to avoid.  Almost five years later, the family can now begin to grieve the loss of Jahi.

Lessons Learned

The McMath tragedy has taught us many things.   First, the brain is complex and trying to draw a black and white “legally dead” line in a spectrum of color is difficult.  But the line is useful.  It is there, in part, to prevent unnecessary suffering.   Second, the term “brain dead” is confusing, and we should consider dropping the term.  As Alexander Capron eloquently stated at the Harvard Bioethics Conference, “Organs do not die, they cease to function.  People die.”   Third, the McMath family had every right to refuse a DNC diagnosis.  Death involves a subjective, personal philosophical viewpoint and a family’s personal beliefs should be considered along with the medical and legal declarations.  However, families need to be fully aware of the ramifications of their decisions if they choose to reject a medical diagnosis, including the physical, emotional, spiritual, and financial costs.   Finally, the McMath case highlights the importance of approaching such cases with compassion and patience. Because our tasks often become routine, many of us in medicine turn on automatic mode and go through our day oblivious to the fact that behind every number and intervention is a person.  Just a few months prior to removing Jahi from the vent, Jahi’s grandmother stated, “…would we have fought so hard had the hospital been more compassionate?”  May we all heed the profound message in that question.

References:

• Aviv, Rachel, What Does It Mean to Die?  Annals of Medicine, February 5, 2018.
• Belkin, Gary S., Death Before Dying, Oxford University Press, New York, 2014.
• Schmidt, Samantha, “Jahi McMath, the California Girl in Life-Support Controversy Is Now Dead,” Washington Post, June 29, 2018.
• Tobin, Martin J. ed, Principles and Practice of Mechanical Ventilation,  McGraw-Hill Companies, Inc, 2013.

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