Cracking the Health Code

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

If you watched one of the major networks in the past week – CNN, MSNBC, Fox News – you would think that the only newsworthy thing that happened was the arrival of the royal baby in England. Even here in the United States, a country that rejected British rule over 237 years ago, hysteria over the birth of Prince William and Kate Middleton’s son reached a fevered pitch.

Unfortunately lost in all of the hullabaloo surrounding the royal birth announcement were far more interesting and important stories, including several that have important public health and policy implications. For example, the US National Research Council and the Institute of Medicine released the results of a long awaited study that compared the overall health of Americans with their counterparts in 16 other affluent countries. The results were shocking.

Despite spending nearly twice as much on health care as countries like Australia, Canada, Great Britain and Japan, the US consistently ranks at the bottom in terms of public health outcomes. American men ranked last in terms of life expectancy, while American women ranked next to last. Americans also have higher rates of premature birth and infant mortality, teen pregnancy, sexually transmitted diseases, heart disease, lung disease, obesity and diabetes, traffic injuries and homicides. In many of these measures, the US faired no better than some impoverished countries in Asia and South America.

The main reason for this disparity seems obvious: compared with other affluent countries, far too many people in the US lack health insurance or face other financial barriers that prevent them from seeking care. There is also a lack of primary care providers in the US, so even those Americans who do have insurance often wait until they are very sick to seek treatment, usually from specialists who provide care at a substantial premium.

Of course, several of the reforms included in the Affordable Care Act are designed to address these problems. When these reforms kick in over the next two years (assuming that Republicans fail in their repeated attempts to repeal them), more people will have insurance. Reimbursement rates for primary care physicians will also increase, hopefully luring more doctors to specialize in preventative care. Finally, both the Affordable Care Act and the American Recovery and Reinvestment Act (the so-called stimulus package) provide nearly $250 million to increase the number of doctors, nurse practitioners and physician assistants trained in primary care.

Given this, we should expect the currently poor status of health in our country to improve dramatically, right? In ten to fifteen years, America should no longer rank at the bottom of the list of affluent countries with respect to public health outcomes like life expectancy, infant mortality and teen pregnancy, right? Sadly, this probably won’t be the case. The problem of poor health in the US is not just a question of limited access to care. Rather, the problem goes much deeper than that. It is rooted in the fundamental structure of American society.

What too many academics, clinicians, policy makers and politicians fail to appreciate are the structural determinants of health. The social and economic conditions that surround us on a day-to-day basis have as much of an impact on health as whether or not we see a doctor on a regular basis. Consider, for instance, the recent results of a twenty-year study of so-called ‘crack babies’.

During the crack cocaine epidemic of the 1980s, an estimated 150,000 to 200,000 children per year were born to cocaine-using mothers. The babies exposed to cocaine in utero were more likely to be born prematurely, be of low birth weight, exhibit delays in cognitive development, or be diagnosed with an attention deficit disorder. The crack epidemic, it was feared, would result in a generation of children with severe behavioral or cognitive problems.

That fear, however, was unfounded. For the past two decades, a team of researchers has been following these children carefully, tracking every aspect of their cognitive and physical development using a battery of psychological, educational and clinical tests. These researchers found was that there were no significant mental and physical differences between babies born to crack-addicted mothers and those who were not. However, children who were raised in poor inner-city neighborhoods were more likely to lag behind their wealthy suburban peers in both mental and physical development. Poverty, the researchers concluded, was “a more powerful influence on the [health] outcome of inner-city children than gestational exposure to cocaine.”

Compared with other affluent and considerably more healthy countries like Australia, Canada and Finland, the US has higher rates of childhood poverty, greater income inequity and less social mobility. All of these affect public health, more so than access to medical care. Until we address the social and economic problems that affect our health, America will remain the sick cousin of the developed world.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on July 24, 2013. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

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Hunger Games: Guantanamo Bay

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

Guantanamo Bay is back in the news.  It seems that several of the inmates are currently participating in a hunger strike that began in February of this year.  It was started to draw attention to the camp and make a political statement that it should be closed as President Obama promised it would be during his 2008 campaign.

The hunger strike started with just a few prisoners and has expanded to over 100 of the 166 detainees.  About 45 of them have lost a significant amount of weight and require forced feeding to keep them alive.

So, what does “forced feeding” entail exactly?  Twice each day the prisoner is restrained at the hands, feet, and head, in a chair, a feeding tube is inserted into the stomach though the nose, and a protein shake (Ensure, or the like) fed to the prisoner through this tube.  The process can take up to 2 hours per person, per feeding.  With 45 people on feedings, each twice a day, this is no small operation for the Guantanamo Bay medical staff.

Some activist groups consider the forced feedings to be torture.  To back up their claim they look to the world of medical ethics.  The World Medical Association and American Medical Association, among other organizations, accept that patients have the right to refuse life sustaining treatment, including tube feedings.  This has been established through cases like that of Terri Schiavo, the Florida woman in a vegetative state whose story made headline news in the early 2000s.

Reprieve, a human rights group, recently released a video of Hip-hop artist/actor, Yasiin Bey (also known as Mos Def) undergoing the same forced feeding procedure that is happening in Guantanamo Bay.  In the video, Mr. Bey is unable to complete the procedure and it is stopped before the tube is even completely lowered into his stomach.  For much of the 4 minute video he is seen screaming and crying in an orange jumpsuit while being restrained in a chair, with people in white lab coats attempting to place the tube in his nose.  He continues to scream and struggle, until an off screen voice tells them to stop the procedure.

The video was made to illustrate the painful nature of the forced feeding procedure; the group considers the procedure a form of torture and has openly called for the feedings to be stopped.  The tag on the Reprieve website is, “Reprieve delivers justice and saves lives, from death row to Guantanamo Bay.”   Given their current argument about the forced feedings I find this tag line to be ironic.

It seems Reprieve has missed a major memo, so let me break it down here:

If we stop the forced feedings and the prisoners still refuse nourishment, they WILL die!

So, the question becomes: can you live with that?

If you will please look to the left of our military you will see a rock and to the right a hard place…now choose.

The military defends their decision to pursue the forced feedings saying they don’t allow suicide by any other means, so they choose not to allow it in the form of starvation.  I understand their position and that they are trying to prevent the loss of life.

My personal feelings however, are against the forced feedings.  Not because they are torturous or painful, though I’m sure the procedure is less than pleasant.  I am against them because I think our military and our country are being manipulated by the prisoners at Guantanamo Bay.  They stop eating and what has been the American reaction?

  • The New York Times printed an editorial about the horrors of Guantanamo Bay in a prisoner’s own words.
  • We discuss how the forced feedings could interfere with Ramadan, therefore violating the prisoners’ right to freedom of religion.  (Side note: The feedings are currently being performed at night to respect the religious traditions of the prisoners.)
  • Human rights activist groups, like Reprieve, take up the cause and renew the fight for the camp to be closed.

I don’t think the men of Guantanamo Bay actually want to die the miserable death of starvation, but rather they have found a captive audience for this new game of theirs.  If the feedings continue the hunger strike will never end.  The only way I can see to convince the men to start eating again is to let them see their decisions play out in some of their comrades.

I understand that my opinion is probably not a popular one, I don’t even like it myself to be honest, but what choice do we have?  Many will certainly say, “Close Guantanamo Bay…there is your choice.”  To them I say:

Whether you choose to believe it or not, there is a reason these men are being held in Guantanamo Bay and a reason that our current President, like the last one, has not closed the facility.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on July 15, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

In Sickness and In Health

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

Just two weeks ago, the US Supreme Court struck down the Defense of Marriage Act, which barred federal recognition of same-sex marriages even if they took place in one of the 13 states or in the federal district where such weddings are legal. In a 5–4 decision, the Court ruled that key sections of the Act were unconstitutional because they deprived same-sex couples of liberties protected by the Fifth Amendment.

The Defense of Marriage Act, or DOMA as it is colloquially known, was passed in 1996 when it appeared that Hawai’i was about to legalize same-sex unions. Fearing that other states would be forced to recognize those marriages, Republican and Democratic politicians alike quickly and overwhelmingly voted to limit the federal definition of marriage to unions of heterosexual couples. The Act also allowed states to refuse to recognize same-sex marriages granted in other states.

Despite Congressional haste in passing DOMA, same-sex marriage did not become legal in the US until nearly eight years later. In May of 2004, Massachusetts became the first state to allow such unions. So it was only then that the law’s effects became apparent. Specifically, the federal government provides nearly 1,200 different rights, benefits or privileges to married couples, including health insurance, pension and disability benefits, financial aid, immigration status, and survivor benefits. Until last month, these rights, benefits and privileges were denied to same-sex married couples.

One thing that supporters and opponents of legalizing same-sex marriage can agree on is this: the institution of marriage matters. The federal rights, benefits and privileges denied to same-sex couples until last month are important. Should I need to, my husband of 5 days – yes, I got married this past Saturday and yes, I married a dude – can be put on my health insurance plan without my paying a financial penalty. Should I be confined to a nursing home or long-term care facility in my later years, he will also have full visitation rights. And when I die, he will inherit my albeit-meager estate without being forced to pay inheritance taxes.

But getting married has benefits that go above and beyond what the government offers. For instance, married couples tend to be happier. A recent survey of nearly 100,000 couples found that getting married had a greater positive effect on individual happiness and wellbeing than religious faith, a stable job, or having children. On average, married people were happier than those who are cohabitating, single, divorced or widowed.

Other studies have found a strong correlation between marriage and mental and physical health. People who never marry are far more likely to die at a younger age. They are also more likely to suffer from cardiovascular disease, diabetes, cancer, long-term illness and disability, mental illness or substance abuse. This is true even for couples that live together for a long time but never marry. Cohabiting couples don’t see the same health benefits as those who wed. There’s just something about being married.

There are any number of reasons to explain why this may be the case.  For example, married couples tend to have greater economic and financial stability, which is not only less stressful but enables them to eat better and see a doctor regularly. Because most health insurance plans cover spouses, marriage increases the likelihood of having insurance. It also reduces the likelihood of becoming uninsured after a job loss or other major catastrophic event. Finally, married couples have higher levels of social support, both within the relationship itself and from family and friends. This may encourage them to make healthier choices, but also provide a mental and emotional buffer when dealing with personal challenges.

Of course, correlation is not causation. Moreover, it’s the quality of the relationship that matters. A troubled or tumultuous marriage can adversely affect the wellbeing of those within it; it’s no misnomer to call these relationships ‘unhealthy’.  For most of us, however, marriage is likely to lead to better health and a longer life.

Most of us marry for love, some of us marry for money, and still others marry for a variety of personal and family reasons. I got married because I love my husband and because I want my friends, family and the rest of society to recognize that commitment. I didn’t get married for the government benefits. Nor did I get married for the boost to my health. That’s just an added bonus and, since I want to spend the rest of my life with the man of my dreams, gives me that many more years to enjoy his company.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on July 11, 2013. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Take a Breath

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

The country has been gripped with interest watching the case of Sarah Murnaghan.  Sarah is a 10 year old Cystic Fibrosis patient who was in desperate need of a lung transplant.  The current transplant waiting list rules state that children under the age of 12 can receive lungs from an adult donor only if those lungs are not needed for an adult or adolescent in the same geographical area.

On the surface this may sound malicious and unjust, but let’s dig deeper.  In order for a child, under the age of 12, to receive adult lungs they must be re-sized for the smaller chest cavity of the child.  Current research says that this re-sizing process can make the lungs less stable and the transplant less successful than adolescent or adult transplants.

Being a logical thinker these types of media frenzy stories drive me batty.  An uneducated public is led by a manipulative or possibly, equally uneducated media to “react” on emotion rather than truly think about the issue.  In a moment the country was abuzz about the “unfair” transplant allocation rules and how we need to change them RIGHT NOW!

I am not saying that these rules don’t need to be updated; I am certainly no authority on lung allocation or transplantation.  My knowledge in this area is limited to information that came up in my recent Google search.  We may very well need to change the process, but let’s take our time, use logic, and consult the experts.

Certainly, Sarah’s story is heart wrenching and no one wants to see a little girl’s life end.  Medical policy however, cannot be created based on preventing whichever outcome would make us the most sad.  UNOS, the United Network for Organ Sharing, has difficult, almost impossible decisions to make every day about who receives the organs they have available.  They have to make these decisions logically and free of emotion.  To be truly just, they need to give the organs to patients who will benefit from them the most, this includes considering which transplants will be the most successful.

After the nationwide outcry and a court order, Sarah’s name was given priority on the lung transplant list.  She received her transplant and her body almost immediately rejected the lungs.  Three days later Sarah received a second transplant; it is extremely rare to receive two transplants so close together.  This second surgery was approximately two weeks ago, and according to press releases from her parents Sarah is doing well.

We should certainly all be happy for Sarah and her family and pray for her continued recovery.  I have no issue at all with the Murnaghan’s fight for their daughter.  I understand what it means to have a family member with a terminal illness and the need to exhaust every resource within reach to save them.  Any avenue that brings a family peace or allows them to continue the fight is fine with me.

I am disappointed however with the reactive media and general public.  Organ allocation is a complex process and should be treated as such.  This means any proposed changes should be thoughtful, logical, and well supported with data.  Sarah’s story stirs emotions in us and we want to help her, but what about the other people on the transplant list?

Maybe there is a 15 year old honors student, or a 22 year old with aspirations for medical school, or a 25 year old mother of 2, or 40 year old father of 5.  We need to keep in mind that Sarah’s is the story we know, but not the only sad story on the lung transplant waiting list.  We trust UNOS with the decisions, because they have a commitment to making them logically, based on need and benefit rather than emotion.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on June 30, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]