Death Panels are Back, and They Want to Pay Grandma to Die

by Patricia Mayer, MD, Bioethics Program Alumna (2009)

Run for the hills: federally-funded Death Panels are back!

Ok, that was a bit of a cheap shot.  But many of us in medicine – especially those in hospice and palliative care – are still incensed by the “Death Panel” scandal.

As many know, the myth of the “Death Panels” almost derailed health care reform in the Summer of 2009.  Sarah Palin, one-time candidate for Vice President, posted a scathing critique of health care reform on Facebook. In that critique, she decried the inclusion of federal “Death Panels” as part of the Affordable Care Act. In a follow-up post, Ms. Palin specifically mentioned Section 1233 of the bill, implying that this section sanctioned the creation of these panels, whose purpose would be to decide who was “worthy of health care”.  The claim went viral. Within a couple of weeks, 86% of Americans had heard of the phrase “Death Panels.” Half of those actually believed that they existed.

In fact, no section of the Affordable Care Act (then or as passed into law) included any determination of which patients were or were not worthy of health care. As proposed, the oft-cited (and maligned) Section 1233 simply provided coverage under Medicare for advance care planning consultations.  Every five years, a physician would be able to bill Medicare for a visit whose purpose was to discuss advance care planning with a patient.  As this Section specified, doctors could bill for discussions of “the level of treatment indicated [which] may range from an indication for full treatment to an indication to limit some … specified interventions”.  So the charge that these visits were to tell the elderly “ how to end their life sooner” was clearly untrue.  There was no language at all that sanctioned limiting the care provided to patients. Rather, these voluntary visits were simply designed to help patients complete advance directives (ADs), should they wish to do so. Patients were free to specify in their advance directives that they wanted no limitations on treatment, or they could specify when they wanted to forgo particularly invasive treatments. It was their choice, not their physician’s.

Advanced directives are considered vital in providing proper care and treatment, particularly the types of care people want and the types of treatments that they do not want.  The Joint Commission – which accredits more than 20,000 health care organizations and programs in the United States – actually requires hospitals to inquire about ADs at every admission, to honor these directives when patients have them, and to offer educational materials and assistance in drafting these documents for patients who do not already have them.

Despite claims to the contrary, Section 1233 of the Affordable Care Act simply attempted to make the existing advance planning process simpler by encouraging patients to have these conversations with their primary care physicians.  Having such a conversation is often easier as a healthy or healthier outpatient than as a sick or dying inpatient. However, public outcry about mythical death panels was so great that the provisions of Section 1233 were left out of the Affordable Care Act when it was signed into law in 2010.

So, why were we who work in hospice so upset about the death panel myth? Quite simply, the notion of federal death panels fed into misconceptions about hospice that we’ve tried for years to erase.  Many people already think that hospice provides (and even encourages) euthanasia, a claim that is simply not true. In addition to fighting the “hospice kills people” myth for years, suddenly we also had to confront the “death panels” myth.

Thankfully, the Obama Administration has been determined to encourage and support advance care planning. It has managed to do so with little fanfare or notice. In January 2011, for example, Medicare began paying doctors for advance care planning discussions (just as Section 1233 had intended) in the context of the newly covered annual wellness visit.

But now we have a new twist on this old story.  Conservative Senator Tom Coburn (R – OK), a physician himself, has introduced legislation that would actually pay eligible Medicare beneficiaries $50 if they complete an advance directive. Patients get $75 if they do so online.  This legislation would also establish a process for accrediting advance directive vendors, and it would create a registry of advanced directives accessible by clinicians, institutions, and health care proxies.

Had this legislation had been introduced by a Democrat in early 2009, Ms. Palin would likely have complaining that the federal government is bribing patients to forgo treatment. The cacophony would have been deafening: We are paying Grandma to die!

If we are serious about wanting people to have ADs, however, we must consider this idea carefully.  As angry as those of us who work in hospice are about the “death panel” claim, we need to get over our bitterness. This idea deserves fair consideration, even if it originates from the “death panel” party.

Senator Coburn’s proposal is a good one. It would increase the number of patients with advance directives, empower both them and their health care providers.  Patients are more likely to get the types of care they want. Health care providers will also have guidance on the types and limits of care desired by patients.  Too often patients admitted to the hospital lack decision-making capacity. Without well-informed surrogates or advance directives, the clinical team has no guidance about an individual’s treatment preferences. So they tend to err on the side of caution, doing everything and anything they can to prolong a patient’s life. This scenario often leads to patients receiving a great deal of invasive, hi-tech, and sometimes inappropriate treatments that they may (or may not) have wanted.

We know we need to increase the number of patients with advance directives, so why not try Coburn’s idea?

[The contents of this blog are solely the responsibility of the author and do not represent the views of the Bioethics Program or Union Graduate College.]

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What Price Immortality? Privately Funded Projects and the Prolongation of Life

By Richard Koo, Bioethics Program Alum (MS Bioethics 2011) and Adjunct Faculty

Seemingly ripped from the covers of comic books, no less than three privately funded projects seeking the prolongation of human life have been publicized in the past year.

The 2045 Initiative, dubbed “the Avatar Project”, is arguably the most futuristic and non-traditional of the three projects.  Founded by Russian media entrepreneur, Dmitry Itskov, and featured at a conference in New York last summer, the Avatar Project seeks to create technologies that enable the transfer of human “personalities” to a non-biological avatar, thereby extending life to the point of immortality.

Plans are for the project to be divided into four stages with corresponding developmental time-frames.  Stage 1 (2015-2025) contemplates the improvement of technologies that will allow for the control of prosthetics and robotic components through a brain-computer interface.  Stage 2 (2025-2035) calls for the creation of a full-functioning robot, an avatar, with which the human brain can be linked.  Stage 3 (2030-2035) envisions the achievement of technological capabilities that allow for the transfer or uploading of human consciousness into the avatar.  Stage 4 (2045 and beyond) involves endowing the “humanized avatars” with capabilities that exceed what humans are now capable of doing.

This sounds like the stuff of science fiction, movies (think, “Avatar”, “Surrogates”, “Transcendence”) and wishful thinking. But Itskov’s commitment to financially support  the underlying research is very real (he has net worth of over a billion dollars). He also has the public support of the Russian government as well as several notable visionaries, including roboticist Hiroshi Ishiguro, futurists Raymond Kurzweil and Peter Diamandis, founders of Singularity University (an unaccredited educational institution whose stated purpose is to “utilize accelerating technologies to address humanity’s hardest problems”), and the Dalai Lama (whose support for this project begs to be the subject of another blog!).

Last month, J. Craig Venter announced the formation of a new company, Human Longevity, Inc. (HLI), whose purpose is to develop technologies to allow people to live longer and healthier lives.  Venter is perhaps best known as the head of the private industry effort to be the first to sequence the human genome.  Scientists have speculated that the longevity of centenarians is driven in large part by their having genetic variations that protect them from the effects of aging. Venter plans to have HLI acquire the capability of processing 40,000 human genomes or more a year in a quest to identify the human genetic variations that promote longevity.  Along the way, HLI will collect genetic data on the human microbiome (microbes that inhabit the human body) to develop advanced probiotics, and on the human metabolome (various metabolites, biochemical and fats), with a view to improving human health.  In that connection, HLI will initially target treatment of age-related diseases such as cancer, diabetes, heart and liver diseases and dementia.  HLI’s business plan sounds awfully ambitious, but then again Venter has an established track record in the field of genomics of making things happen, as well as $70 million of privately funded capital for HLI starting out of the gate.  There is apparently more than one billionaire (apart from Itskov) who is interested in living a longer life.  HLI’s co-founders include Robert Hariri, a stem cell pioneer affiliated with Celgene, and Peter Diamandis, who also supports the Avatar Project.

Last fall, Google, Inc., which needs no introduction, announced that it had made a major investment in California Life Co. (or Calico for short), a biotech start-up whose focus will be on combating aging and age-related diseases.  Thus far, Google has declined to provide details on how Calico would operate or what it would do, but it did publicize the recruitment of several biomed rockstars on Calico’s team in addition to Ray Kurzweil, who also supports the Avatar Project.  It’s worth noting that Google’s two founders, Larry Page and Sergey Brin, both attended Singularity University.

Here’s what comes to my mind:

  • Should we humans being going down this road at all to seek immortality or longer life?

Some folks would even argue that it’s just plain wrong to play God or to mess with what it means to be human.  Philosophy and religion aside, on the one hand, it’s hard to argue that finding a cure to disease and suffering and helping people overcome disabilities (e.g., with the use of prosthetics) are not worthwhile goals.  On the other hand, the potential for abuse and unexpected developments along the way are frightening.

  • Do these three projects, announced within the span of a year, portend the privatization of the quest for immortality or longer life?

It sure seems like it.  Governments don’t have the motivation to make a long-term investment in prolongevity R&D and wait for the return on investment to the extent that wealthy individuals do.  We can expect announcements of new private prolongevity projects or the additional funding of the ones presently off the ground in the near future.

  • Can privatizing the quest for immortality and long life become problematic?

When we speak of private parties cutting the keys to open the door to changing the course of human evolution, I think the answer is yes.  For one thing, private parties do not have to act for the greater good, each project presumably having to be held accountable to obtain a return on investment for the investors first.  Furthermore, depending on the structure of the organization and how it is capitalized, a project does not even have to share any details of what it is doing (see Calico).  There also exists the concern that in the hands of private parties, benefits to be gained from the technological advances from the project will be reserved for the wealthy few.  Finally but not exhaustively, undertaking to address the socio-economic fall-out that comes with longer human life on average…e.g., how to provide for the social security, feeding, housing, health care and employment in societies where people live significantly longer on average…is undoubtedly not within the scope of any such project.

  • How about regulating it?

Right now, the path between getting these prolongevity projects off the ground and the realization of their goals seems far too remote for there to be any political will to try to regulate their activity.  In fact, governments are probably glad to see private money fund these projects that might spin-off health dividends because those funds need not come out of the public coffers.  At some point if and when any of these projects get closer to realizing their stated goals, the pressure to impose regulation will rise so that we can better understand and prepare for the ramifications of such success.

What do you think?

[The contents of this blog are solely the responsibility of the author and do not represent the views of the Bioethics Program or Union Graduate College.]

Otherwise Alone

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

Walk with me a moment…you are an 80 year old widow, live alone, a quiet life, with your popcorn and politics, and suddenly something changes.  The left side of your body is not moving quite right and your thoughts seem slower … foggier.  A kind neighbor convinces you to go to the hospital and this is where our story really begins…

“Ma’am, you need to be admitted, is there someone we can call?”

“No”

Scared and alone you learn that you have had several mini strokes, that you need tests, and possibly surgery … but that’s not right, you are healthy, strong, independent.  Tests and surgeries?  You have never needed them before … maybe you don’t really need them now.  80 is a good long life … and it has been a good life … I mean, what’s the worst that could happen?  Death?  That doesn’t scare you, not as much as those tests … and surgery.

So you tell the nurses and doctors: no tests, no pokes, no prods, and certainly no surgery.  Suddenly, the mood changes, the nurses once kind and calm are now testy and aggravated.  The physicians, who are supposed to be explaining the situation, are frustrated and condescending.  Don’t they understand?  You have lived a good life and now it must be time to go.  It’s like you aren’t speaking the same language…why won’t they understand?

The star of this tale happens to be my darling aunt, and thankfully this story has a happy ending.  Her favorite niece (me of course) … you don’t believe me … who’s telling this story anyway?  As I was saying, her favorite niece happens to speak fluent “medical-ease” and was able to broker a deal between clinician and client.  She had the tests and surgery and is happily back to her popcorn and politicking.

As a clinical research coordinator at an oncology center, I interact with very ill patients every day.  After my aunt’s experience, I never looked at patients who came to the hospital alone in the same way.  I believe more than ever that every patient needs an advocate.  It doesn’t matter how brilliant or independent you are in everyday life, when you are truly sick you need a buffer, a neutral set of eyes and ears to help control the situation, to make sure that everyone is speaking the same language.

Years ago, another aunt was the first to tell me I had a talent for this translation, she had recently been diagnosed with diabetes and was home, still not having any idea what that really meant.  I was a science undergrad at the time and was able to bridge the gap for her.  As a reward for my efforts she dubbed me the official “family medical translator.”  This experience taught me a valuable lesson about how patients may act like they understand their diagnosis when at the physician’s office, but ultimately leave confused.

As medical professionals, it is certainly difficult to know where each individual patient is coming from, but some general assumptions can be made when you are talking about serious, terminal, or emergency health issues.  In these cases, you are likely dealing with someone who is both scared and overwhelmed.  When we live this life everyday it is easy for our patients to blur, for us to forget that they are more than just sick and in need of care, but are complete lives, with stories, ups/downs, family and friends.

Also, it is easy to forget, when we work in a hospital or with the terminally ill, that this day is unique and intense for each of our patients.  It was once explained to me like this: when we as medical professionals walk the hospital halls our world is in black and white, it is our routine and we will remember today no more than yesterday, but for every patient we meet, that day is being lived in vibrant color and will be forever branded on their memory.  I try hard to remember this when I interact with patients at the hospital, on some days and with some patients it is easier than others.

In the medical community, we should make a concerted effort to better understand and recognize the emotional needs of patients.  This may mean you sit and chat with a patient for an extra few minutes, or help translate between them and a clinician, or kindly encourage them to call a friend or family member for support.  All patients can benefit from this, but we should try to be particularly aware of the emotional needs of those patients who are otherwise alone.

[This blog entry was originally posted on Ms. Spranger’s blog on April 1, 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.]