Your Doctor Has a DNR Order, But Not for the Reasons You’d Think

by Jacob Dahlke, Bioethics Program Alum (MSBioethics 2012)

How many doctors would choose to have a “Do-Not Resuscitate” (DNR) order over a full code option? 88.3%, at least according to a new study. For those counting at home, that’s greater than percentage of Americans who currently disapprove of the job that Congress is doing.

This means that nearly 9 out of every ten physicians would not personally choose the treatment that they routinely perform on their elderly, frail, critically ill, or emergent patients. (There is some concern that these patients are not routinely provided an effective mechansim for making this decision, meaning the default treatment in most cases is to provide CPR regardless of underlying conditions; perhaps that’s a topic for another post.)

This is an intriguing figure, one that on its face seems to imply that physicians may be providing treatments that they know they ought not; after all, if they don’t choose it for themselves, then certainly it is not an effective treatment. Perhaps there is an alternative view, however. Before I discuss this modified perspective, let’s first get into CPR a bit more.

First, CPR refers to cardiopulmonary resuscitation, or an attempt to restart a person’s heart that has stopped beating. This loss of function means that there is no blood (and thus no oxygen) pumping through the body, meaning that a person will not have a pulse if checked. The subsequent lack of oxygen to the brain leads to death. Second, where you receive the CPR attempt can determine it success. Only 1 out of 8 persons who suffer cardiac arrest outside of a hospital survive. It initially appears that survival is higher in a hospital setting: 38% of patients over the age of 70 who received CPR had a return of blood circulation.

This statistic alone can be misleading, however, since over half of those patients (the ones who received CPR) don’t survive until being discharged from the hospital. If we reorganize the definition of success based around patient goals – surviving until getting out of a hospital, or not dying in a hospital – then that number drops to 12%-18% (based on age). CPR may provide an additional 24 hours, albeit in a hospital. So this is, in a conservative estimate, a potential reason that physicians decide against this treatment for themselves.

But the tone in such news articles seems to suggest that physicians have some sort of secret that they are holding against their patients. Instead, it could be a lack of access to relevant information, and a lack of education on the part of the patient to make informed decisions at this juncture of their lives. A physician who becomes a patient is simply in a better position to be informed about the risks, benefits, and alternatives to any proposed treatment, including CPR. To expect that a ‘typical’ (non-medically trained) patient would have the same level of knowledge is inaccurate.

Instead, by presuming that a patient does not know what they don’t know, then there becomes a responsibility to ensure that a patient understands their clinical situation. So the physician, at age 72, would opt out of attempts at CPR because s/he knows that there is only an 18% chance of survival and recovery. For the other patient, s/he may choose to remain full code, believing that nearly 1 in 5 is a good enough chance to ‘go for it’. Or not. But the medical community must do a better job of communicating relevant information about end-of-life treatments and options.

To advocate for more, and better, discussions about CPR, DNR, and code status is not to advocate for wresting control away from patients and limiting their lives. It is instead empowering them to make better, more informed decisions about treatments that align with their personal values.

[This blog entry was originally posted in a slightly different form on Mr. Dahlke’s blog on May 30, 2014. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

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Alzheimer’s Disease: The Forgotten Epidemic

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

We hosted a conference on Alzheimer’s disease at the College last week, inviting a distinguished group of physicians, researchers, caregivers, advocates and policymakers to discuss the ethical and legal challenges of diagnosing and treating those with the disease.

These issues are particularly important to me. I have immediate family members who have been affected by Alzheimer’s disease, as patients and as long-term caregivers. I also carry a genetic trait known as APOE-e4 that makes me far more likely to develop the disease, and to do so at a younger age.

As someone whose career and self-worth are tied to my ability to think and write creatively, the very thought that I could slowly lose everything that makes me who I am terrifies me. I also worry about the huge personal and financial impact that a diagnosis of Alzheimer’s could have on my family.

Those living with Alzheimer’s, their families, and their friends also struggle with a myriad of practical issues as the disease slowly robs them of their memory, their thoughts, their speech, and their motor functions. They face difficult choices about treatment, independence, safety, long-term care, and end-of-life decisions.

There is also emotional toll. It is never easy to lose a parent, a sibling, a partner or a friend. But unlike patients suffering from other terminal illnesses, those with Alzheimer’s and similar neurodegenerative disorders die twice. They die mentally when their dementia reaches the point that they no longer recognize or remember family and friends. They are still alive physically, and may continue to live for many more years, but the person they were is gone. Family members are left to grieve the loss of their loved one while still caring for the stranger that they have become.

This is the cruel reality of Alzheimer’s. It is also a reality that most of us will have to deal with in the years that come.

The US Centers for Disease Control and Prevention (CDC) ranks Alzheimer’s as the sixth leading cause of death in the United States. An estimated 84,000 Americans died of the disease in 2010.

But that is likely to be a gross underestimate of Alzheimer’s physical toll. According to a recent study conducted at Rush Alzheimer’s Disease Center in Chicago, the number of deaths that are actually attributable to the disease may be 5 to 6 times higher. That would mean that nearly half-a-million Americans died of Alzheimer’s in 2010, making it the third leading cause of death in the US. Only heart disease and cancer took more lives.

Currently, 1 in 9 Americans aged 65 or older has Alzheimer’s. That proportion rises to nearly 1 in 3 for those aged 85 and older. That translates to 5 million people in the United States who have the disease, a number that is expected to triple over the next few decades with the demographic changes associated with the aging of the baby boom generation.

Alzheimer’s is already the most expensive disease in the US. We now spend over $200 billion dollars a year caring for those with Alzheimer’s including $150 billion in Medicare and Medicaid. About half of all nursing home residents are people with Alzheimer’s disease or other neurodegenerative diseases, most of who rely upon Medicaid to pay for their long-term care.

But that too is likely a gross underestimate of the financial toll of this disease, as it fails to take into account all of the unpaid care provided by family and friends. Nearly 18 billion hours (or $200 billion) of free care was provided in 2013. Most often than not, this care was provided by women who left the workforce in order to care for an ailing spouse, parent, or sibling.

Unless we do something to reverse this tide, Alzheimer’s is going to bankrupt us financial and emotionally. We can’t reduce the economic cost of caring for those with the disease, so the only solution is to find new ways of slowing or preventing the onset of dementia. We need more research that is aimed at developing new cures and treatments.

Despite this, funding for Alzheimer’s research lags considerably when compared with other diseases like breast cancer, stroke, heart disease and HIV/AIDS. Although Alzheimer’s now kills nearly as many people as cancer, for example, the federal government spends twelve times as much on cancer research as it does on Alzheimer’s.

This has got to change. We need more bills like the Alzheimer’s Accountability Act, introduced in 2014 by Representatives Paul Tonko (D-NY-20) and Brett Guthrie (R-KY-2). We need to provide more funding for Alzheimer’s research, but we need to do so in a way that doesn’t rob other research initiatives (including efforts to find a cure for cancer) of desperately needed resources.

Unfortunately, this is unlikely to happen. Our Congressional leaders are too focused on cutting costs, including slashing the federal budget that supports biomedical research, to recognize the looming crisis. Alzheimer’s will, I fear, remain an overlooked and forgotten epidemic until it is to late intervene.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on May 22, 2014, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Will Bioethicists Support Hunger Strike Death? A response to Wesley J. Smith

by Jacob Dahlke, Bioethics Program Alum (MSBioethics 2012)

I came across a post from Wesley J. Smith at National Review Online regarding a recent ruling about force feeding prisoners at Guantanamo Bay. (Credit to Art Caplan for the tweet that brought this to my attention.) I would like to take some time and craft a reply to his question.

In short my position is this: Bioethicists ought not support the forced feeding of prisoners engaged in hunger strikes. Note that this does not directly answer Mr. Smith’s question, which is deftly written to bait someone who is opposed to his view into supporting the death of these prisoners. That is at best an inaccurate characterization of the opposing view. This is an attempt to more accurate characterize that view, with full acknowledgement that there is likely room for many disparate views.

Citizens, within the context of healthcare, are afforded particular rights with regards to medical treatments. One such right is that to refuse such treatments, a violation of which could constitute battery. There are landmark legal (and ethical) cases that highlight this right, most notably Nancy Cruzan and Dax Shephard. They provide a framework for discussing other persons, free or imprisoned, who decide to refuse medical treatments that may or will result in their deaths. The person at the center of this discussion, Jihad Ahmed Mujstafa Diyab, has an otherwise ambiguous role in American society.

To see Mr. Diyab as a prisoner – and thus eligible for a comparison to a prisoner in Kentucky who died following a purported hunger strike – ignores the fact that he has not actually been convicted of any crime to consider him as a criminal or felon. (It also ignores that the Kentucky death was not a clear hunger strike in protest, but rather a possible suicide or, even worse, a result of untreated mental illness.) Indeed, Mr. Diyab has not even been charged with any crime, he has only been detained (for an incredible 12 years). Were he charged, tried, and convicted, we would likely have a very different discussion on our hands. But this man is not yet a convicted criminal, so we are left to consider him ‘something else’. We must also leave Mr. Smith’s assertion that since Mr. Diyab is a criminal he is eligible to lose such rights as other convicted criminals, such as in the Kentucky prisoner death.

If we ignore all of the above, however, and presume that Mr. Diyab is actually a prisoner then we can ask what I assume is at the heart of Mr. Smith’s question: is a prisoner permitted to risk their health and potential life by undergoing a hunger strike? And, do medical ethical principles support the actions of the involved physician to treat only the symptoms associated with malnutrition and dehydration, fully aware that failing to treat the cause will eventually lead to death?

I will begin with the latter question. Mr. Smith wrote in a previous post that physicians who do not intervene to reverse the effects of the hunger strike are engaging in political activism, not medical ethics, and that “helping hunger strikers strike is not a doctor’s job.” He also writes that such an “intervention is only necessary because of self-inflicted harm and the feeding seeks to prevent death and destruction of health, not cause it. In this sense, it is not the same thing at all as a cancer patient refusing chemotherapy.” On this I  disagree. This implies several professional obligations of a physician, including:

  1. intervening in the health-altering behavior of a patient (“helping hunger strikers strike”, and the “destruction of health”). If this were actually a physician’s professional obligation, then physicians would be compelled to intervene to keep patients from knowingly risking their health and life from smoking cigarettes, eating high calorie diets, and leading sedentary lives. All three of these behaviors are known to put a person’s health at risk, albeit drawn out over a longer period of time than a hunger strike. Instead, I propose that the physician’s obligation in this case is to ensure that the patient is aware of all of the risks to their behavior, and to offer alternatives with better known benefits. To say that the physician decides that a patient with full autonomy is simply making the wrong choice and that the physician will instead make a ‘better’ decision on behalf of the patient smacks of paternalism.
  2. the prevention of death. While the avoidance of death can be celebrated as an outcome of medical interventions, it is only the byproduct of the underlying professional obligation of minimizing harms. It should be self-evident that minimizing harm can include avoiding death, but they are not synonymous. If they were identical, a single professional obligation, then the entire field of hospice and palliative care would not exist, since those professions (employed by physicians) do not seek to prevent death even though it may be a known prognosis, and instead it seeks to manage pain and other symptoms associated with the dying process.

Regarding the former question, regarding whether the rights lost by prisoners include that of medical autonomy, that should also be an irrelevant point since the status of the patient within the physician-patient relationship should not be a determinative factor. That is, a prisoner, detainee, or inmate should not receive an alternative level of care once that relationship has been begun, lest we begin a tiered system of patient and physician interactions.

Physicians that manage the health of detainees, whether on hunger strike or not, are working to maintain patient autonomy while still attempting to manage a balance between promoting patient benefits and minimizing harm. They are not engaging in political discourse; rather, they are simply doing their jobs as outlined by their profession.

[This blog entry was originally posted in a slightly different form on Mr. Dahlke’s blog on May 19, 2014. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Mandatory Organ Donation: Ethical or Outrageous?

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

Organ donation is the gift of life. By donating organs after we die we can literally bring someone back from the brink. Pretty awesome right?

So awesome in fact, that it could be argued, and has been, that everyone should want to donate their organs when they die, and consent for donation should be presumed.

What would this mean? Presumed consent for organ donation means that viable organs would be harvested from anyone who dies and consent from the patient or family would be unnecessary. Every person would need to opt-out of the donation program rather than the current “opt-in” plan we have now.

As with everything in life there are pros and cons with an opt-out plan. Let’s start with an obvious pro: with more available organs, more sick patients can get the transplant they need. This is a definite good, but is it worth the cost.

One of the arguments I have heard for mandatory organ donation is: you don’t own your body once you die. The assumption is that once I have died neither I, nor those who love me, have a vested interest in my body and until it is released to my family for funeral arrangements it in essence belongs to the government and my organs can be taken for donation without any ethical issue.

I adamantly disagree with the idea that I have no vested interest in my body once I have died. My interest extends from the values I have lived during my life. Furthermore, ownership and all decisions therein, should belong to my next of kin. This ownership is crucial for many families. For me, the final act I can perform for my loved one is ensuring the safe passage of their remains. It is vital for me to have ownership of this task as part of my grieving process. To remove personhood and its intrinsic value because life has left the body is illogical and disrespectful to the person as well as the loved ones they leave behind.

Another issue with presumed consent is that it expects an educated populous. At this point in our society we need to recognize that this cannot be expected. The vast majority of Americans live very uninformed lives for a variety of reasons. If you don’t believe me watch some of Jimmy Kimmel’s Lie Witness News, they will make you cringe.

Finally, I think that making organ donation mandatory changes the psychology of the act. Right now to donate you organs is altruistic and selfless. If it becomes mandatory it changes the dynamic, instead of an altruistic giving of your organs, you become a renter of those organs until your death. This may sound like a small thing, but changing this changes the way we view donors entirely.

In the end, organ donation saves lives, which is an important and wonderful thing. However, making donation mandatory comes at a cost. Are the lives saved worth possibly violating a person’s body? Or upsetting their family?

Treating everyone with respect and dignity is the most important thing we can do. We should not place one patient at a higher priority while neglecting the other patient or their family.

As you have likely gathered I am strongly against mandatory organ donation. That being said, organ donation is crucial and we should educate all citizens on the great gift they can give at the end of their life. This will be an uphill battle, but if you agree with organ donation tell a friend and tell them to tell a friend. With passionate advocates making the case to individuals we can raise the number of willing organ donors without compromising the donation process.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on May 15, 2014. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

The Botched Execution of Clayton Lockett: Is Lethal Injection Painless and Humane?

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

Clayton Lockett died last week, but few will mourn his death. A four-time convicted felon, Mr. Lockett was executed by the State of Oklahoma for shooting and then burying alive a 19-year-old girl. Following his death, Oklahoma Governor Mary Fallin proudly stated that, “justice was served”.

Justice indeed was served, at least if you believe in the Biblical principle of an eye for an eye and a tooth for a tooth, for Mr. Lockett suffered greatly during the 43 minutes it took him to die by lethal injection.

Twenty minutes into the execution — during which Clayton moaned, writhed and gritted his teeth — correction officials discovered that the vein used to deliver a lethal cocktail of drugs had collapsed. Instead of entering his bloodstream, drugs that were meant to render Mr. Lockett unconscious, paralyze him, and stop his heart leaked into the surrounding tissue. He was partially awake and in considerable pain.

State officials called off the execution, but it was too late. Forty-three minutes after the execution began, Mr. Lockett suffered a heart attack and died.

Although a majority of Americans support the death penalty, capital punishment remains a controversial topic. Should our system of justice be based on rehabilitation or retribution? Can a society condemn the wanton taking of life by individuals like Clayton Lockett and yet sanction the same act by government officials? Is this penalty fairly applied to all of those accused of capital crimes or do racial and ethnic minorities bear a disproportionate burden of punishment?

No matter where you fall in this debate, the horrific manner in which Mr. Lockett died should raise serious concerns about our current method of execution by lethal injection.

Execution by lethal injection was first proposed in the 19th century. It came into widespread use in the 20th century, initially as a cost-effective means of involuntary euthanasia under the Action T4 program in Nazi Germany.

It wasn’t until the latter part of the 20th century that lethal injection became a common method of execution in the United States. Oklahoma was the first state to legalize the use of lethal injection, and other states quickly followed suit. It is the preferred method of execution in the 32 states that allow the death penalty.

Until recently, the approach used in the United States has remained largely unchanged from the lethal injection protocol first proposed by Oklahoma’s state medical examiner, Jay Chapman. Known as the Chapman protocol, it involves the use of three drugs: a barbiturate like sodium thiopental to render condemned prisoners unconscious and insensate, pancuronium bromide to cause paralysis and suppress respiration, and potassium chloride to trigger cardiac arrest.

But despite claims that this approach is more humane and less painful than other execution methods, this has never been demonstrated. Chapman himself did no research in designing the lethal injection protocol that bears his name. Similarly, no one has ever collected data that shows that lethal injection prevents the “unnecessary and wanton infliction of pain” required by the Eighth Amendment to the US Constitution.

Worse yet, states that allow execution by lethal injection are now forced to deviate from the Chapman protocol due to drug shortages. Several of the drugs used to execute condemned prisoners are in short supply, largely because imports from manufacturers in Europe have stopped.

The European Union limits the manufacture and export of drugs that can be used for capital punishment under its existing Torture Regulation. Many European drug companies no longer produce and sell these compounds. Of those companies in Europe and the US that do still manufacture these drugs, most are reluctant to sell them to state Departments of Corrections.

In states like Texas and Ohio — where lethal injection is the only execution method allowed by law — this shortage has left corrections officials scrambling to find alternative sources of these drugs or to devise alternative means to carry out state-sanctioned executions. Rather than use sodium thiopental, for example, some states have started using varying doses of a different drug — sodium phenobarbitol — alone or in combination with pancuronium bromide and potassium chloride as their lethal injection cocktail.

States are also calling upon small companies known as compounding pharmacies to provide the drugs required, as Oklahoma did for Clayton Lockett’s execution. But compounding pharmacies are not FDA-regulated. Sometimes, they are even not licensed or qualified to mix these particular drug combinations. States are thus using drugs of unknown quality and potency as part of the lethal injection protocol.

Our increasingly random approach to executing prisoners via lethal injection, using drugs obtained from poorly regulated sources, raises any number of questions about the constitutionality of this method of capital punishment. Regardless of what you might think about men like Clayton Lockett, they too have certain inalienable rights. One of these is the right to be free of “cruel and unusual punishments,” which includes guaranteeing that state-sanctioned executions are free of unnecessary and wanton pain.

There should be immediate moratorium on the use of the death penalty until we can prove that our current methods of lethal injection are indeed humane and pain free. Otherwise we are condemning thousands of inmates to a fate worse than death.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on May 8, 2014, and is available on the WAMC website. Portions are also adapted from an article written by Dr. Philpott-Jones and published in the March-April 2014 Issue of the Hastings Center Report (Philpott S. 2014. Execution by Lethal Injection: Illegal Research? Hastings Center Report 44(2): 11-12). The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]