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Live or Let Die?

How informed consent evolved into advance care planning.

Years ago when a patient was grievously ill, they weren't asked what treatments they did or didn't want, "partly because doctors didn't have much to offer anyway," said medical ethicist David Barnard, PhD, JD. "There was a deference paid to professional authority and medical expertise."

However, Barnard, who was recently named Miles J. Edwards Chair in Professionalism and Comfort Care at the Center for Ethics in Health Care at Oregon Health & Science University, Portland, OR, explained that as medical options developed, so did misunderstandings around end-of-life care.

"Legal decisions and other social movements added up to the notion that no one should have medical treatments they hadn't agreed to. So we now have a medical practice that puts informed consent at the center."

That informed consent evolved into advance care planning, producing legal documents like advance directives and living wills.

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Discussions about a legal paper indicating care measures you would or wouldn't want if your health were grievously compromised, have waxed and waned according to the latest legal battles of families in crisis; notably, Karen Ann Quinlan who died in 1985; Nancy Cruzan in 1990 and Terri Schiavo in 2005.

"Around the time of the Schiavo case, we had increased requests for information on how to create a legally binding advance directive," said Kathy Brandt, MS, senior vice president, Office of Innovation, National Hospice and Palliative Care Organization (NHPCO), headquartered in Alexandria, VA. "At one point, we had to shut down our helpline because we couldn't keep up with all the calls."

Ironically, Brandt told ADVANCE, "a few months after Schiavo's death, a Pew study said more Americans understood what advance directives are, but only about 29 percent actually had living wills. "Then came the healthcare reform debate and the term 'death panels,' and people said 'we aren't going to talk about it anymore,'" Brandt remembered.1

(The term first appeared in a blog in 2009 by Sarah Palin, former vice presidential candidate. Palin said a clause in the proposed federal healthcare legislation calling for reimbursing physicians for conversations with patients on their end-of-life wishes would encourage euthanasia. Fact-checkers, academics and many physicians groups said the premise was false.)

Barnard believes discussions about "death panels" missed the point entirely.

"Talking about how you want to be treated when you are really sick can be an opportunity to say I want everything that's possible to be done to keep me alive," he stressed. "Having the conversation isn't at all equivalent to 'I want to die quickly.' It can lead to discussions of what is life about, what is the source of my hope, my feeling secure."

Living Wills

Knowing the controversy and issues: are written advance directives providing the best way to ensure you get the care you would want at the end of your life?

"The evidence is mixed on this," said Barnard. "Informed consent works best when patient and doctor are having a conversation face to face. "Initially, the hope was if we could devise advance directive forms with sufficient clarity, the patient would have some degree of control or ability to give or withhold consent when not able to participate in the conversation."

Barnard strongly advocates appointing a surrogate who knows you well and can speak for you if you cannot, and believes the planning process is the essential part of any advance directives efforts.

"Even if the advance directive document itself is of scant help when decisions have to be made, prior conversations will have conveyed enough of an impression of the patient's attitudes and values that surrogates will know what treatment decisions they should make," Barnard wrote in 2002 in Journal of Palliative Medicine.2

The Questions

According to Barnard, advance care planning conversations with surrogates should answer questions such as:

• What qualities of living are most important to you?

• What would you consider part of the essentials of a satisfying existence?

• Does that existence have to do with the ability to recognize people, physical independence, to travel, enjoy music?

• How much would you be willing to tolerate in medical treatments to maintain your existence?

Barnard pointed out, and Brandt agrees, that most advance directive forms ask questions about a whole gamut of sometimes vague medical treatments a person would want such as artificial nutrition, administration of blood products, antibiotics, oxygen.

Brandt believes all the information out there can be confusing. Add to that the misconception fostered by popular TV shows "that when a person gets CPR they always live," she pointed to the NHPCO website, which offers templates for living wills, advance directives and a glossary of terms that explains medical phrases, "such as artificial nutrition through a conduit."

Another Approach

Barnard believes another option that is gaining momentum, the Physicians Orders for Life-Sustaining Treatment (POLST) Paradigm program (, has great potential because it promotes in depth conversations among all involved and because the document is portable and can go with the patient to every healthcare setting.3

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POLST translates patient treatment goals into written medical orders after discussion among healthcare professionals, the patient and surrogates. It has been adopted in more than a dozen states.

However, Barnard said these conversations are still not happening often enough.

"The doctor is waiting for the patient to bring it up," said Barnard of studies on the topic. "And the patient is waiting for the doctor to bring it up. Physicians have the responsibility to open the door and should open it early in their relationship with a patient.

"Just as you ask questions about a person's medical history, you ask 'how do you prefer to make decisions on your healthcare'. We have to emphasize the trusting relationships we form with whoever we ask to make those decisions," Barnard said.

References for this article can be accessed here.

Gail O. Guterl
is a frequent contributor to ADVANCE.

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I work at a nationally-renowned hospital. Unfortunately, that renown is largely for our research rather than our true innovation. I work in the medical ICU, where the percentage of deaths we see far outweighs any other unit or floor of the hospital, including trauma, oncology, and the ER. That does not mean that we handle death well - and when I say "we," I certainly am not referring to our nurses.

I think the reason for that is complex: nurses are taught, typically, in a more holistic manner than most American medical schools. Our nurses also "live" in the MICU, as I like to say, month after month, year after year... The residents come for about 6 weeks, rarely to return; attendings rotate in for a few weeks at a time, then come back in a few months to a year. It's easier for them to see the patients on a case-by-case basis rather than seeing the pattern of futility. That does not mean that "flogging," as we (nurses) like to say, is an ok option, just b/c the MDs don't see the pattern.

Some MDs do see the futility. However, they are still under the misconception that "it's what the family wants, we have to do it." This notion of "informed consent" is a major misnomer - how do you inform a patient or family member that the treatment we're going to give them (say, intubation b/c they're pneumonia has gotten so bad that their pH is dangerously low, they're going septic and what that truly means) carries these certain risks with it, and brings those certain possible outcomes. How do you explain to someone, the person dying in a strange hospital room in a weird gown, years of knowledge and experience? When they're lying in bed, tripoding, vast majority of Americans are going to say "do whatever is necessary."

Which is why these conversations MUST happen BEFORE hospital admissions. B/c that way, a better, clearer, MORE educated (though I will argue that it's never truly "informed consent" based on the nature of our education and complexity of the human body) choice is made.

What about those people to whom TREATMENT should not be offered? The 85-year-old with multiple comorbidities that have been in place for the last 20-30 years - hey, let's start them on dialysis. B/c God knows, their kidneys are failing so we must treat that, b/c the family said yes!

I'm sick of it. SICK of putting people through pointless pain and risk, utilizing our tax money (I accepted long ago that I mostly pay my own paycheck), for what? The outcome is the same. People rarely ever get any "more" peace than they would if we had initially said "treatment isn't possible - we'll make you and your loved one comfortable." Talking about moral distress - this issue? Is moral disease. Moral suicide, even. Because we still walk through those doors three shifts a week. We still push prop when the fellow is intubating the 70-year-old riddled with cancer who even the oncologists say should not be intubated b/c it's futile.

Which leads me to my inner loop that saves me when I'm at work, b/c the fact that at least one other person feels this way, too, is comforting: "The saddest aspect of life right now is that science gathers knowledge faster than society gathers wisdom." - Isaac Asimov

annonymous ,  RNAugust 29, 2012

You're so right. The title, which was chosen by the editor and not the author, is in retrospect somewhat insensitive for the reasons you mention. It certainly drives home what most see as the primary reason for having an advanced directive, but clearly we could have been more thoughtful and perhaps used a less provocative headline.

Chuck  Holt,  editor August 29, 2012
King of Prussia, PA

First...this is simply a very tacky title for this article. If we want our patients/the public to engage in an intelligent discussion on end of life issues and we want to avoid any of the politician/media induced hysteria (remember "death panels"???) we need to chose our words carefully and craft a message that is not sensationalized but rather shows sensitivity and respect. While using the title to an old Bond movie (or Sir Paul song) may seem clever to the writer, it does not help to promote engaged dialogue.
Second....the concept of an involved proxy who knows you and understands how you define quality of life, gained through discussion and the sharing of thoughts and feelings is great in states where surrogate decision makers are recognized. But in states that do not recognize this (such as WI where the only legal decision maker for an incapacitated adult is one who is appointed via advance directive or by the court as a guardian of the person) a written document is still needs.
Third...yes...nurse can and should have end of life discussions with their patients and loved ones (within the confines of HIPPA)! Standing by and waiting for our physician partners to initiate the discussion does not show full the depth and breadth of what nursing is...caring for the entire patient...mind, body and spirit.

Cathy Batzner,  RN, BSN, MSNAugust 29, 2012
Pewaukee, WI

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