Tragedy and Choice

As the AP and the Indianapolis Star reported last week, Tim Bowers, a 32-year-old man from Decatur, Indiana, was hunting deer from a tree stand last week and fell 16 feet, breaking his neck and leaving him dependent on a ventilator and most likely paralyzed for life.  The next day, doctors took him off the ventilator to ask him whether he wished to continue, given the likely prognosis, and he chose to stay off the ventilator.  He died a few hours later, surrounded by family and friends.

The story first made local, then national news in large part due to the mixed feelings it engenders.  On the one hand, this appears to be a case where a patient’s doctors respected his autonomy and choice, which many found praiseworthy.  He was asked what he wanted, he answered, and he got what he asked for.  On the other hand, many wonder whether he was responding emotionally or even irrationally to the situation, whether medical professionals at this point could confidently predict his future limitations, and thus whether it was right to “ask the patient” at this time and in this way.  In the end, any opinion about all this involves a large degree of speculation, due to the limited information we have about a largely private event.

In a couple recent interviews with local news stations I said much the same.  Unfortunately, this comes off as the sort of “two-handed philosophy” (“On the one hand…”, “On the other hand…”) that is as common as it is unsatisfying.  But it is also appropriate.  The case of Tim Bowers is truly a triumph of autonomy, a case where he had a chance to make a decision.  In addition, people who knew him have asserted that he was consistent in never wanting to live in a wheelchair. 

At the same time, did he truly comprehend what life as a paraplegic or quadriplegic would be like?  Paraplegics often say that healthy people – or themselves when they were younger and not paraplegic – underestimate the quality of life of a paraplegic.  Was Bowers overwhelmed by the severity of his accident, the life changing and tragic consequences, in a way that clouded his judgment?  Did he have enough information to decide? 

And, at a deeper level, if these were problems with his decision making, then how long should his doctors have waited to ask him what he wanted?  What information should he have been given?  Should he have been kept on a ventilator for weeks or months, perhaps even put though a procedure to create a tracheostomy (a hole in the throat, necessary if a person remains on the ventilator for more than a week or two), before he was deemed to have absorbed enough information, or comprehended his situation, to be able to make a decision?  Down this road lies justice delayed, and thus denied.

The fact that the doctors took out his endotracheal tube as soon as they did suggests that the family may have specifically requested this, to ask him what he wanted sooner rather than later, perhaps because his previously stated wishes suggested that he would not want this. 

While the case is unusual, it raises many of the same questions about autonomy, beneficence, rationality, and informed decision-making that many of us at the Center study in our research and teach in our work with students, doctors, and researchers.  And at its core Bowers’ accident was a tragedy, for a man and his loved ones, and there was no easy answer for how to respect his wishes and thus provide truly “patient-centered” care.

Peter H. Schwartz, M.D., Ph.D.
IU Center for Bioethics

Follow the Money: The Affordable Care Act, not the Subsidized Care Act


Covering the Uninsured

Like many, I rejoiced at the news of the Supreme Court’s decision upholding the individual mandate and the key provisions of the Patient Protection and Affordable Care Act (PPACA). As a doctor and medical ethicist, I think it is an important step in healthcare reform.

And it is now certain that the presidential election will hinge at least in part on health reform. Voters will have a clear choice on the PPACA: Romney will repeal, and Obama will implement. Which do you want, America?

President Obama and his supporters tout the law’s promise to make affordable health insurance available to many of the 32 million Americans who do not have medical insurance. This is a terrific accomplishment, as are the protections for those who already have insurance, such as eliminating limits on lifetime claims.

At the same time, for the ensuing political debate and the evaluation of the PPACA overall, much more than these accomplishments have to take center stage. Focusing on the uninsured will not win over the electorate. Too many Americans who vote have insurance, and are not fearful about losing it, so the plight of the uninsured is one step removed.

The Elephant in the Room – Cost of Healthcare

Instead, the cost of healthcare is the elephant in the room. The healthcare budget has been increasing faster than the economy for more than 50 years and there is no end in sight. Spending on healthcare now comprises 18% of GDP and continues to grow. Nobody believes that this is sustainable. Democrats and Republicans disagree about how to curb the growth (more on this below) but not that it is necessary to do so.

The growth threatens to upend the federal budget as well as state budgets by causing unsustainable increases in Medicare and Medicaid spending. And it weakens American business. As long as the expense of providing healthcare insurance for your employees is large and growing out of control, it is difficult to hire or to compete with businesses in countries with affordable healthcare.

Obama took on healthcare reform, according to all reports, at least largely because he saw that allowing this growth to continue was simply irresponsible. And he eventually settled on the individual mandate as the essential first step. Once everybody is contributing, and everybody has health insurance, one can start the process of rationalizing and controlling the system.

It would be great if we could control cost without first getting everybody into the system, but that isn’t going to happen. Heck, even Romney knew that when he was governor of Massachusetts, which is why he supported the individual mandate then. The current Republican “proposals” (yes, they do deserve quotation marks) have no hope of achieving this important aim.

The politics

It’s necessary that Obama and other defenders of the PPACA make this argument, and own this aspect of the law, since if they do not, they are ignoring a very real concern about its effect on the budget, at their peril.

Critics of the ACA point out that simply making people join a system that is out of control is like putting your foot on the accelerator of a truck with no brakes. The idea that providing insurance to the uninsured will by itself control costs, by simply getting them to treat health problems before they get serious, is not well supported by the literature. Many preventive measures save lives, but even the best mostly do so at some expense, rather than also saving money.

Instead, Obama and the ACA supporters should be honest that getting everybody (or, almost everybody) insured was simply the first step in controlling costs. Once everybody is in the system, we can make changes that can finally adjust incentives in ways that reward providing essential, cost-effective care rather than providing inessential, expensive care.

As Atul Gawande pointed out in an excellent article in the New Yorker in 2009, the PPACA includes massive numbers of pilot projects to explore ways to improve care and control costs at the same time. Approaches have to include all good ideas, many of which are not possible without a system that includes all possible patients.

As Obama used to emphasize, it’s about finding ways to “bend the curve,” and slow the increase in healthcare spending, not reducing spending from current levels. We don’t have to give up what we have to control spending. In fact, the best way to make sure that we will have to give up what we have is to let prices continue to go up in the future, until even the middle class cannot afford the cost.

But that means that Obama and his team have to explain the sort of mechanisms that we can hope will allow PPACA to lead to truly “Affordable Care” not just subsidized care. They must admit that these mechanisms are still uncertain but at least hold out the best hope of finally controlling costs, to keep the newly insured insured, and to save American medicine.

Can Obama Avoid this Argument?

Some political pundits or advisors will say that Obama should just focus on the easy wins in the law, such as covering the uninsured, eliminating lifetime limits and cost adjustments based on new or pre-existing conditions, allowing young adults to stay on their parents’ insurance, and eliminating the doughnut hole in pharmaceutical coverage for seniors. Why admit that there is a big challenge that comes next, and that the law just sets up the country for having to make decisions to control costs?

The short answer is that you can’t avoid it and addressing the question. Americans know that you can’t get something for nothing. And the size of the federal deficit, and the criticism of federal spending in current discourse, has made it clear that money is not limitless.

If Obama didn’t want to have this discussion, and make this case, he shouldn’t have gone down this road in the first place. It’s “all in” in the poker sense, not just the solve-the-uninsured sense.

Ducking the questions is not honest, and it is not good politics. The discussion of the PPACA must include straight talk about how it will allow us to finally confront and address the ever growing health budget. Above and beyond celebrating the success in covering so many of the insured.

Peter H. Schwartz, M.D., Ph.D.
IU Center for Bioethics

Innovative Approaches to Increasing the Access to Health Care: The Cambodian Example

On a visit to Cambodia in March of this year, I was fortunate enough take a tour of its premier teaching hospital – Angkor Children’s Hospital (“Angkor”).  During the visit, the hospital staff provided me with extensive information about the health needs of the community, and the programs the hospital has implemented to improve the access to health care in Cambodia.  Functioning as a safety net hospital which never turns away patients for inability to pay, the institution is funded by the Friends Without a Border NGO.  Angkor was started by Japanese photographer Kenro Izu after a child died in front of him when he was visiting the historic temple complexes in the area.  My visit to the hospital was a real lesson in how much can be done with so little, and left me with the question of how some of the innovative programs at Angkor could be remodeled and implemented in America and elsewhere.

Cambodia has unique causes of social and health problems hospitals such as Angkor must address.  These include the ongoing loss of life and limb from the still prevalent land mines; the unbalanced population of predominantly young people after the Khmer Rouge genocide nearly eliminated the older generation; the fact that many Cambodians survive on less than $1 per day; and the fact that 85% of Cambodians live in rural areas.

Angkor has treated over 1,000,000 children since it opened in 1999, and provided nearly 3,000 home visits for chronic care patients in 2011 alone.  Patients treated at Angkor routinely must travel 100 miles or more to reach the hospital.  More children die on their way to the hospital than at the hospital, and the ailments they suffer from are frequently both preventable (with education) and easily treatable (if the children can receive care before their condition severely deteriorates).  The most common reasons for admission to the hospital are: pneumonia; dengue and hemorrhagic fever; diarrhea; sepsis; malaria, HIV and malnutrition.

There are many transportation barriers to accessing quality healthcare for many Cambodians.  Many people earn only a $7 weekly wage, and high costs of transportation make trips to a facility like Angkor difficult or impossible.  It is not uncommon for a family to sell a cow, or even their home, to try to get their children to the hospital.  Even if they can raise the money for the trip, it still can take several days or more to arrive at the hospital.  The child may die en route, or arrive too late to be effectively treated.

While the hospital is home to a 24 hour emergency room, upon arrival, some outpatient cases may be asked to return for treatment the following day.  On any given night, you may see those who’ve traveled the furthest distances pitching mosquito nets outside the hospital where they sleep until morning.

In response to the transportation barriers like these, Angkor has focused heavily on not only staffing its hospital – but also capacity building – to achieve sustainable impact. The hospital provides extensive medical training for doctors and nurses in local communities.  Angkor has piloted programs which send doctors and nurses who have been highly trained at Angkor into local neighborhoods to both treat people in rural areas, and to provide additional training to local medical practitioners.  Less than $1 million funds the hospital for a year thanks to their innovative measures to keep costs down and increase effectiveness.  Its focus on outreach has reduced the number of deaths that occur in children en route to the hospital (which can be a long and treacherous journey in rural areas with poor infrastructure).  By providing better training to the staff at 40 regional hospitals in Cambodia, Angkor attempts to provide the highest quality care in the most effective and cost efficient manner possible.   Angkor employees and volunteers teach individuals in rural areas about basic health, nutrition, and hygiene, helping to prevent many incidences of disease which could otherwise become serious.  Home visits are also provided through the Angkor home care program, since returning to the hospital is often too expensive for patients needing preventative care.  At the same time, providing home visits rather than treating these patients in the hospital is more cost effective.

While there are key differences that cannot be overlooked, there are also many things America’s public clinics and safety net hospitals can learn from this institution’s success.  Over the course of the next several weeks, through a series of blog postings, I plan to take a cursory look at the issues that are present at a variety of public access clinics and hospitals in the U.S. and abroad, identifying the key issues, notable successes, and similarities in the different institutions and approaches to the challenge of providing accessible and affordable health care.  I hope to include information about the following: availability and ease of access to care for the poor/uninsuredquality of care provided; types of diseases/injuries most often requiring treatment by the patients; education and outreach programs; costs of running such programs; and social framework which created or contributed to the failures of the health system among particular populations.

Heather Mullins-Owens, J.D. is an M.A. candidate at Indiana University where she studies bioethics. She is also the Director of Global Health at HERO Network LLC, a team of interdisciplinary researchers using collaboration to inspire innovations in health policy, to increase access to healthcare, and to decrease health disparities in diverse populations internationally.  Follow her on Twitter @HLMullinsOwens, and @HeroNetwork.

Reasons to Support a Binding Treaty on Health R&D for Developing Countries

The 65th World Health Assembly of the WHO is currently considering a treaty that will fund and coordinate research for diseases affecting developing countries. The proposal was put forward by the Consultative Expert Working Group on Research and Development: Financing and Coordination (CEWG), a body created in 2010 to develop the efforts of previous committees established to consider health R&D. In a report last month, the CEWG concluded that “a binding instrument on R&D is necessary to secure appropriate funding and coordination to promote R&D needed to address the diseases that disproportionately affect developing countries and which constitute a common global responsibility” (p. 120).

Economic and moral justifications for the treaty

The economic justification provided by the CEWG frames the treaty as a response to a market failure resulting from the inability of intellectual property (IP) rights to incentivize companies to invest in drug development for diseases affecting the developing world. The treaty’s funding mechanism is designed to address this economic barrier to research investment.

The moral justification contains two arguments. The first is based on the problem of access: the international community has medical resources and the capacity to distribute them, and yet a multitude still suffers and dies from lack of medicines. The CEWG deems this preventable gap between means and needs as morally unacceptable. The CEWG urges that the moral argument for equitable access to existing medicines be extended to drugs not yet developed, a goal reflected in the proposed R&D treaty. Of particular interest is the second moral argument, which is based on health-related human rights responsibilities that governments have assumed toward their citizens as a matter of international law. A multilateral treaty requiring governments to spend money in their health sectors would mark a departure from the practice of the last sixty years.

A return to post-WWII international ethical principles

Although the treaty would mark a change in practice, it would represent a return to ethical principles agreed to by the international community after World War II. The Universal Declaration of Human Rights (UDHR), a nonbinding legal document, was adopted by the United Nations in 1948. It embodied an ethical vision based on the principle that “[a]ll human beings are born free and equal in dignity and rights.” Moreover, it sketched a blueprint for realizing that vision in a legally binding document. The UDHR described rights and obligations for governments to respect and assume so that the freedom, dignity and equality of all people could be ensured.

However, competing visions of human rights tussled during the drafting of the UDHR, and intensified further during the Cold War. When it came time for a binding legal instrument, the single vision and framework was split into two treaties: the International Covenant on Civil and Political Rights (ICCPR, 1966) and the International Covenant on Economic, Social and Cultural Rights (ICESCR, 1966). The ICCPR was spearheaded by the US-led Western, capitalist bloc and focused on negative rights, i.e. rights fulfilled by governments refraining from actions that interfered with citizens’ rights (e.g. freedoms of expression, religion, movement, etc.). The ICESCR was championed by the USSR-led Communist bloc and focused on positive rights, i.e. rights realized by government action (e.g. rights to education, health, housing, etc.).
Over time, rights in the ICCPR were prioritized over those in the ICESCR. This was partly because the latter were harder to enforce in law courts, but also because they were much costlier (a point relevant to the proposed treaty). This imbalance resulted in reduced health spending among governments, particularly among developing countries. However, as the Cold War waned, the tension between the treaties subsided and the international community reaffirmed in the Vienna Declaration and Program of Action (1993) the indivisibility, interrelatedness and interdependence of human rights. This has allowed for greater international cooperation in the area of health, perhaps most visibly with the HIV/AIDS epidemic. Governments, private organizations and philanthropists have since combined efforts to address various health challenges from malaria to tuberculosis. These laudable efforts notwithstanding, there has not been a broad-based legally binding health-related treaty containing an explicit funding obligation.

Three reasons to support a binding treaty for health R&D

First, it ensures a source of sustainable funding for health R&D in the developing world. Global health today involves many actors, including governments, nongovernmental organizations, corporations and philanthropists, all able to act alone or in partnerships. Of these actors, however, governments are able to make funding commitments least susceptible to market trends, waning voluntary donations, or shifting public interests. A binding treaty would keep R&D funding from slipping off the global health agenda.

Second, a binding treaty ensures, not just funding, but public accountability for health R&D. Of the global health actors listed above, governments are accountable to the broadest constituencies. Particularly if they are democratic, governments can provide a means for diverse sectors of society – beyond stockholders and donors – to inform, criticize and influence funding decisions.

Third, a binding treaty recognizes that the commoditization of health is an inadequate approach for addressing health needs in developing countries. As the CEWG Report noted, a health R&D market failure has created, among other things, the need for public action through the concerted legal commitments of governments. The CEWG’s proposal recognizes the critical role governments will need to play in global health.

Funding sustainability, policy accountability and public engagement constitute three grounds for a health R&D treaty. By involving governments in funding health R&D, such a treaty would begin to restore the split vision of the UDHR. Of greater importance, it will encourage research addressing needs of those with the least access to health.

– Ibrahim Garba

Open Access Week: Bioethics

Here at the Center for Bioethics we are marking Open Access Week by highlighting our free electronic collection, the Bioethics Digital Library (BEDL).

BEDL works to provide access to: out of print books that are now regarded as “classic texts” in bioethics and humanities; court decisions and legislation; government documents; the “gray” literature (unpublished, but authoritative professional literature such as conference abstracts, presented papers, commission meeting minutes); full text of journal articles; and both audio and visual materials.

Popular items in the collection include:

Jennifer Girod and Katherine Drabiak. A proposal for comprehensive biobank research laws to promote translational medicine in Indiana. 5 Ind. Health L. Rev. 217-250 (2008). http://hdl.handle.net/1805/1843

Eleanor D. Kinney, Heather A. McCabe, Amy Lewis Gilbert, Janna Jo Shisler. Altered standards of care for health care providers in the pandemic influenza. IND. HEALTH L. REV. 2009;6(1):1-16. http://hdl.handle.net/1805/2306

Eric M. Meslin and Kenneth Goodman. Biobanks and Electronic Health Records: Ethical and Policy Challenges in the Genomic Age. Indianapolis: Center for Applied Cybersecurity Research, Indiana University. October 2009. http://hdl.handle.net/1805/2129

Ethics guide for health care practitioners: working under conditions of an influenza pandemic. Plan, prepare, practice. http://hdl.handle.net/1805/2010

John E. Sidle. Experiences in Bioethics from Kenya: Equity, Informed Consent, and Community Participation in Research. Second lecture in a series: International Research Ethics. February 23, 2006. http://hdl.handle.net/1805/559

Hosted by the IUPUIScholarWorks repositiory, BEDL is a stable, secure and free place to archive and find bioethics information.

If you would like to contribute an item to the Bioethics Digital Library or have questions about using the collection, contact us at: cntbioet@iupui.edu.

If you would like to search or browse the collection, visit: https://scholarworks.iupui.edu/handle/1805/6

Conference on Infant Mental Health to Focus on Ethics

The Indiana Association for Infant and Toddler Mental Health will hold its 13th Annual Conference on Infant Mental Health on August 12, 2011 at the Riley Outpatient Center at Riley Hospital in Indianapolis. This year’s conference is entitled, “Ethics in Early Childhood Fields: A Moral Psychological Approach.”

The conference features keynote presentations by Darcia Narvaez, PhD and Daniel Lapsley, PhD, both from University of Notre Dame; a presentation discussing ethics in early childhood by Margaret Gaffney, MD, of the IU Center for Bioethics; interactive sessions moderated by IU Conscience Project members; and a panel discussion highlighting practical applications of the information presented throughout the day. Continuing education is available for social workers, psychologist, and physicians (see brochure for details).

Sponsors and partners for this year’s conference include: the Indiana Department of Child Services, Indiana Head Start Collaboration Office, Indiana State Department of Health’s Sunny Start Project, Indiana University School of Medicine, Department of Psychiatry, the Indiana University Conscience Project, the Indiana University Center for Bioethics and the Riley Child Development Center LEND Program.

Please note that you can register by mail/FAX using the form in the brochure OR online through the MHAI website: https://secure.entango.com/donate/MHAIInfTod2011

Attend the Third Annual Teaching Skills in International Research Ethics Workshop

TaSkR IIIThe IU Center for Bioethics and the IU-Moi University Academic Research Ethics Partnership will host its annual Teaching Skills in International Research Ethics (TaSkR) workshop April 12-14 in the Health Information and Translational Sciences (HITS) Building, room 1110.

This workshop will focus primarily on the ethics of research involving human subjects—both behavioral and biomedical—conducted in an international forum, as well as developing stronger pedagogical skills.

The workshop will be attended by over 40 participants plus faculty facilitators.  Participants include faculty who teach within the broad domain of international research ethics, whether this is in the classroom, through lectures, or mentoring students, fellows, and post-docs.  Attendees include faculty who teach in medicine, public health, behavioral science, and a number of liberal arts subjects.  Our guest speakers include: Henk ten Have (University of Duquesne) Peter Schwartz (Indiana University), Margaret Gaffney (Indiana University), Edwin Were (Moi University), Kenneth Goodman (University of Miami), Martin Were (Indiana University), Charles Rotimi (National Institutes of Health), and David Ayuku (Moi University).  We will be joined by Joseph Ali (Johns Hopkins University), Ross Upshur (University of Toronto), Henry Silverman (University of Maryland), and Solomon Benatar (University of Toronto, University of Cape Town). TaSkR will also include an African Fogarty Director’s Roundtable discussion.  We hope this discussion will lead to mutual problem solving strategies and enhance collaboration between the African Fogarty Directors.

There is no cost to attend.  For more information or to register, contact Kalli D. McBride, JD, at kdmcbrid@iupui.edu.