Every Day is a Gift

By Neil Skjoldal

Into the genre of news reports about physician assisted suicide comes a powerful piece from The Washington Post.   It is the story of J. J. Hanson who was diagnosed with a glioblastoma multiforme.  It traces his difficult journey as it relates to PAS.  Because of the poor prognosis, treatments at times seemed too difficult.  His wife Kristen reported that “he told her that if he had had the lethal dose of medication on his bedside during his darkest of days, he might have used it and then missed out on three more years with his family.”  Her hopes now, since her husband’s death last year, are that lawmakers will “work to improve hospice and palliative care for patients” and “to encourage terminally ill patients to have hope and families to enjoy every moment they have together.”

I am aware that a story such as the Hanson’s will not convince those who are strongly committed to PAS. The argument would be something like, “That’s ok for him.  He died his way, just give me the freedom to die in my way.”  But, at the very least, this story provides a counter-narrative to some PAS advocates, who almost by default go to “I know a person who died very poorly and I want to stop that by helping them end their suffering.”

My observation in talking to people about this subject is that their greatest fear is dying with horrible suffering. Almost everyone can re-tell the story of a friend or loved one that died in this way.  For those of us who think that PAS creates many more ethical problems than it solves, our focus needs to be, as Kristen Hanson suggests, to continue to improve hospice and palliative care.  I am grateful for her courage in telling her story and am reminded that every moment of life should be precious to us.

Goodbye, Korematsu

BY NEIL SKJOLDAL

Supreme Court watchers always eagerly anticipate the last week of June because that is when the highest court in the land usually reaches decisions in its most controversial cases.  Last week did not disappoint — several of the decisions were reached by the slimmest of majorities (the infamous 5-4 vote). Then, to add to the excitement, one of the longest serving justices, Anthony Kennedy, announced his retirement, giving the talking heads of cable news seemingly endless fodder for roundtable discussions.

In the midst of the frenzy, a few observers noted the words of Chief Justice John Roberts at the end of his Trump v. Hawaii opinion.  The dissent in the case brought up Korematsu, the decision from the 1940s which concluded that the internment of American citizens of Japanese descent was constitutional.  Roberts disagreed with the dissent, but offered this assessment of Korematsu:

“The dissent’s reference to Korematsu, however, affords this Court the opportunity to make express what is al­ready obvious: Korematsu was gravely wrong the day it was decided, has been overruled in the court of history, and—to be clear—‘has no place in law under the Constitu­tion.’ 323 U. S., at 248 (Jackson, J., dissenting).”

Bioethics should affirm the basic dignity of all humanity.  It reacts strongly to governments using people for experimentation against their will, or to the preferential treatment of one people group over another, or any number of other abuses that have arisen over the years.  Those from the Judeo-Christian perspective often link this to the biblical teaching of the image of God (see the powerful book by John Kilner, Dignity and Destiny).  From my perspective, it means hearing the voice of those who do not normally have a voice and affirming the rights of those whom society so casually overlooks.

Looking back seventy-plus years, Chief Justice Roberts sees the issues of Korematsu clearly.  Sadly, for the many American citizens of Japanese descent interred during the Second World War, there were only three Supreme Court justices who stood with them against such horrific treatment.   Korematsu is a sobering reminder of what can happen when the powerful trample the powerless.  During this Fourth of July week, I will celebrate that this decision has been placed in its rightful place, the ash heap of history.

 

 

 

Physician Assisted Suicide, Again

Last month, I sat through a presentation on the ethics of Physician Assisted Suicide (PAS) in a local hospital.  I attended the presentation, not because I am unfamiliar with the arguments on the subject and ambivalent about my feelings on it, but because I wanted to observe how it was presented, what the reaction of the audience was to the presentation, and how it might affect my work as a hospital chaplain.

For some context, the state where I reside, Florida, does not have a PAS law on the books, nor, according to the “Death with Dignity” website, is it even considering one.

I found the presentation to be disappointing, in part because the participants talked past each other as if they were on a cable news program, repeating the typical talking points that have become so common over the years.  It was also disappointing because it used the classic example of a sad, horrible death story to advocate the use of PAS with the highly manipulative question, “You wouldn’t want your loved one to experience this, would you?”  No one ever seems to respond that we cannot build a law out of such experiences because hard cases make bad law, nor does anyone ever take the time to wonder what else could have been done to make the suffering patient more comfortable.  It simply is an elevation of human autonomy to a staggering height.

At the end of the presentation, the PAS advocate asked for a show of hands on people’s support/non-support of PAS.  I didn’t have the heart to count the hands, but the speakers said it was about 65%-35% in favor of PAS.  My worst fears had been confirmed.  After what I witnessed in that presentation, I have no doubt that we are headed full-speed ahead towards a civilization that will in some way systematically encourage its elderly, its weak, its sick, and its disabled citizens to make a “compassionate choice” and choose “death with dignity.”  Those of us who think otherwise are firmly entrenched in the minority.

I understand that I am not the first person to have had this experience, and in some ways I have anticipated this day for some time, but because I saw it so close to home, it still was somewhat shocking to me.   When filling out the seminar evaluation, I found the question, “How will apply what you have learned today to your current practice?”  I’m not sure what the reviewers thought, but my response was simple: “I will continue to advocate strongly against PAS, affirming God’s gift of life whenever and wherever I can.”

My Day at the Florida Bioethics Network Conference–2018

For the past several years, it has been my privilege to attend the annual conference of the Florida Bioethics Network.  As in prior years, this year’s conference showed the great range of topics that fall under the umbrella of bioethics.   Topics included the so-called “Tattoo DNR,” a discussion of medical marijuana, the potential promise of an electronic and interactive informed consent document, and even a discussion of the role of clergy on ethics committees.  Each of these topics could merit a blog post, but the one that grabbed my attention the most was the discussion of “Public Health” by Celeste Philip, Florida’s Surgeon General and Jeffrey Brosco, the Deputy Secretary of Children’s Medical Services for the Florida Department of Health.

In an increasingly divided country, the concept of public health seems more remote than ever before, yet the presenters made it clear that it is a goal worth pursuing.  After all, “Your zip code is a better predictor of your health than your genetic code,” they argued.  With the prevalence of the 23 & Me-style genetic testing, their statement took me by surprise. After giving it some thought, their point was clear.  Addressing public health is an important function of government, they stated, and if the disparities between zip codes continue to grow, our health care system will be facing even more serious challenges than ever imagined. They claimed that the greater the inequality there is in income in a community, the greater the mortality – for everyone.

Both Drs. Philip and Brosco used the ethical concept of justice (which they used alongside “accessibility”) to underscore their case for a robust public health system.  Understanding that there is an ongoing tension between community protection and individual autonomy, they made a case that “Public health ethics requires both identifying the values that underlie policy as well as optimizing the language we use to convey available options.” (If you haven’t seen this already, in 2010 The Robert Wood Johnson Foundation published an article entitled, “A New Way to Talk about the Social Determinants of Health.”

I found the presentation to be both thoughtful and thought-provoking, going beyond many of the typical bioethics conversations that I encounter on a day-to-day basis. Those committed to a Christian worldview would do well to engage in this discussion.

 

 

The Child I Want

I appreciate the honesty of Washington Post columnist Ruth Marcus. Watching various states attempt to enact more and more restrictions on abortion, she wrote of her strong personal feelings regarding the importance of keeping abortion legal.

The headline certainly grabs our attention: “I would’ve aborted a fetus with Down syndrome. Women need that right.” Noting how cute the new “Gerber Baby” is, Marcus reminds her readers that abortion is a choice, and that her choice would be to abort a 2nd trimester pregnancy, if it were determined that the child had Down syndrome. After acknowledging that parents have the right not to abort, she states, “That was not the child I wanted.”

At the end of the article, Marcus seems to back away from the implications of her beliefs. What if, instead of Down syndrome, the child was to have nearsightedness or was destined to be short instead of tall? “There are creepy, eugenic aspects of the new technology that call for vigorous public debate. But in the end, the Constitution mandates — and a proper understanding of the rights of the individual against those of the state underscores — that these excruciating choices be left to individual women, not to government officials who believe they know best.”

Clearly, Marcus does not really want debate. She wants the child she wants.

More thought has got to be given to these matters. Within a week’s time, another Washington Post columnist, George Will, wrote a strong response. Instead of emphasizing the importance of personal choice, he cites a chilling statistic. Only three children with Down syndrome were born in Iceland in 2009, because of the nation’s strong emphasis on pre-natal testing and equally strong push to terminate unwanted pregnancies.

In describing an improved life for a Down syndrome person, Will notes that just a few decades ago, they “. . . were institutionalized or otherwise isolated, denied education and other stimulation, and generally not treated as people.” And here lies the issue which confronts us all: when we decide who to treat as people, we dehumanize all.

 

Parkland & Bioethics

I have lived in South Florida over 20 years now, and I do not remember anything grabbing and holding our community’s consciousness more than the February 14 shooting at the Stoneman Douglas High School in Parkland, Florida (in Broward County).  In its aftermath, the more we hear about the events of that day, the more alarming it becomes.  This is the sort of tragedy that haunts children in profound ways.  I have had conversations with my two teenage daughters about the relative safety of their schools, and what would happen if the formerly unthinkable occurred.

It’s hard to keep track of all the news coverage.  Certainly, there are many on all sides of the gun issue that engage in sensationalism and scare tactics.  Sadly, the voice of the so-called “reasonable middle” often is silenced by the loud voices on the fringes.  I sincerely, but mistakenly, thought that after the horrific shooting at Newtown, Connecticut in 2012 (with the deaths of 20 first graders and 6 adults) leaders would take meaningful action.

Is gun violence a bioethics issue? A research letter published in JAMA in early 2017 says as much.  After citing several powerful statistics, the authors write: “Compared with other leading causes of death, gun violence was associated with less funding and fewer publications than predicted based on mortality rate.”  The debate is over the impact of the Dickey Amendment, passed in 1996, which states that “none of the funds made available for injury prevention and control at the Centers for Disease Control and Prevention [CDC] may be used to advocate or promote gun control.”

Some Republicans in Congress say that the CDC is allowed to do research into gun violence even under the Dickey Amendment, but the evidence presented by Stark and Shah suggests that it is not being done.   Other Republicans have stated that the Dickey Amendment should be revisited. According to www.thehill.com, Rep. Bob Goodlatte from Virginia said that it would be appropriate for lawmakers to review the policy. He is quoted as saying, “I don’t think it’s inappropriate — particularly if the original author of that says it should be examined — to take a look at it . . . to see if there is a way to do that, to promote the cause, the core pursuit of the Centers for Disease Control, which is to prevent disease, not to address issues related to things that happen because someone has a disease like mental illness.”

Clearly, the subject of guns is controversial. Would CDC research into gun violence help affirm human dignity? Or, would the research be too politically biased to be of any value?   Might there be some valuable data gathered that could help address this most tragic of issues? This is a conversation worth having.

 

They didn’t choose brain damage

As we say goodbye to another NFL season, the inevitable stories about the devastating effects of CTE appear, showing the devastation that America’s favorite sport takes on its players. In a recent New York Times opinion piece, Emily Kelly, wife of former NFL player Rob Kelly, tells the story of her husband’s struggles since his retirement.

What makes Kelly’s story interesting is that it addresses the primary issue that NFL-defenders raise: the players knew the risks. She writes: “Professional football is a brutal sport, he knew that. But he loved it anyway. And he accepted the risks of bruises and broken bones. What he didn’t know was that along with a battered body can come a battered mind.”

The good news is that after years and years of denial, the NFL has begun to recognize its role in the health of the players affected by multiple brain traumas. Even better news for Emily Kelly is that she is not alone. That is, she has found a supportive group of other ex-players’ wives with whom to share her family’s struggles. One cannot underestimate the importance of emotional support, because feelings of isolation and shame are powerful chains that keep people from sharing their stories and getting needed help.

Kelly feels that the public still does not know the widespread impact of brain damage on football players and hopes that her story, as well as the stories of others, will help shed light on the issue. “These men chose football, but they didn’t choose brain damage.”  Slowly but surely, the public will become aware, and hopefully, the NFL will respond appropriately.

 

 

 

 

 

The DNR Tattoo

National media outlets have reported the fascinating account of the unconscious 70-year old brought into the Jackson Hospital (Miami) emergency room with a “Do Not Resuscitate” tattoo on his chest.

In correspondence to the New England Journal of Medicine, doctors involved in the case explain the process by which the medical team used to evaluate the case. At first, the team did not plan to honor the tattoo, but an ethics consultation “suggested that it was most reasonable to infer that the tattoo expressed an authentic preference . . . and that the law is sometimes not nimble enough to support patient-centered care and respect for patients’ best interests.” One wonders what facts were used to shed light on the accuracy of the tattoo, especially in view of another case, cited in the NEJM correspondence (“DNR tattoos: a cautionary tale”), when a DNR tattoo did not convey the wishes of the patient.

The accounts of this most recent case end on a positive note: “Subsequently, the social work department obtained a copy of his Florida Department of Health “out-of-hospital” DNR order, which was consistent with the tattoo . . . We were relieved to find his written DNR request…” I was happy to read this too, as tattoos are not necessarily the best way to communicate end of life issues.

Those who work with people thinking about advance directives know that what seems clear one day, could easily be less clear the next. Some patients change their mind on code status frequently, especially as they develop breathing problems and the like. It is, of course, their right to do so. Simply put, it would be hard to rescind (or even modify) a tattoo.

Those of us involved in chaplaincy speak of patients as being “living documents.” I am relatively sure this is not what is meant.

Stem Cell Clinics & the FDA

When any business over-promises and under-delivers, it is well on its way to failure.   Does this principle also hold true in the world of stem-cells?  In the last few months the promise of stem cell treatment has met the reality of government oversight.

Does the government have the responsibility to rein in the larger-than-life claims of stem cell treatment clinics? In a letter dated August 24, 2017 to US Stem Cell of Sunrise, Florida, the FDA cited at least 14 failures relating to the facility’s compliance with federal regulations. It is a powerful letter that makes one wonder what is happening in some of these clinics throughout the country. US Stem Cell responded quickly, re-asserting their claim that they were simply treating consenting patients with their own cells and not subject to the same sorts of regulations that drug manufacturers are.

Is there a place for government oversight over stem cell clinics? At the very least, it could easily be argued that some of their claims are over-the-top and should be subject to false advertising laws.  Michael Joyce makes this point clearly.  He cites the concerns of stem cell researchers Paul Knoepfler and Jeanne Loring. Dr Loring puts it bluntly: “[Stem cell clinics] don’t want to talk to real scientists . . . Because 99 percent of them know they’re pulling the wool over people’s eyes. This is marketing, not science.”

Joyce makes an important point. There are real people with real physical problems who are turning to stem cell clinics as a last resort. If one buys a faulty product from the mall, one has the opportunity to return it for a refund. However, if one receives a faulty medical procedure, how can they be repaid for their loss? In these cases, shouldn’t stem cell clinics be held accountable for misleading the public?

The New York Times describes what happened to some unfortunate individuals who suffered at the hands of US Stem Cell: “The women had macular degeneration, an eye disease that causes vision loss, and they paid $5,000 each to receive stem-cell injections in 2015 . . . Staff members there used liposuction to suck fat out of the women’s bellies, and then extracted stem cells from the fat to inject into the women’s eyes.” They “suffered severe, permanent eye damage…”

Desperate people will try desperate things in order to receive desirable results. It is my opinion that the FDA is acting properly by providing at least a level of protection from those who would exploit the desperation of suffering people.

Spiritual Pain

Recently, I’ve been thinking about spiritual pain. Given our current circumstances, it seems like it is more prevalent than we may have imagined.

In a 2006 article in the Journal of Palliative Medicine, spiritual pain was defined as ‘a deep pain in your being … in your soul, that is not physical’ (Mako, Glek, & Poppito). I must admit that seemed a bit nebulous to me, but it has been repeated in several other articles since which have dealt with this topic. Hospice innovator Cicely Saunders brought this concept to the front of people’s thinking with her talk of ‘total pain.’

In several studies on spiritual pain, cancer patients were asked if they had it, and presented with the definition above. Many said that they did. These studies have concluded that medical teams should take spiritual pain seriously as they seek to treat the “whole person,” not just a collection of miscellaneous symptoms. The thought being that, if someone’s spirit is being addressed, then perhaps the body would respond more positively. Or at the very least, perhaps relief in the spiritual area might mitigate some of the physical symptoms they are facing.

As a hospital chaplain, this seems quite reasonable to me. There are many patients whose very presence in the hospital (for any reason) leads them to experience spiritual pain. “Why am I here?” they ask. Or, “I thought God was on my side—how could this happen?” The sense of pain, although not measurable with medical devices, is absolutely real. It is something akin to what the prophet Jeremiah cried out to God in the Hebrew Bible: “Why is my pain unending and my wound grievous and incurable? You are to me like a deceptive brook, like a spring that fails” (Jer. 15:18).

In light of recent events—earthquakes, hurricanes, and horrific shootings—we must not only tend to the obvious physical needs of the hurting, but also to the spiritual pain they are facing. Last week I spent a day in Marathon in the Florida Keys talking to several people who had lost everything they owned in Hurricane Irma. Obviously, their physical needs are many; however, they also have a need to speak of what they lost and whether they will have the spiritual strength to carry on. It was my honor to hear what they had to say.

Treating the “whole person” entails listening to their struggles and offering meaningful support. This is more necessary than ever before. Let’s make progress in easing spiritual pain.