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.
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."
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
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."
Barnard believes another option that is gaining momentum, the Physicians Orders for Life-Sustaining Treatment (POLST) Paradigm program (http://www.polst.org/), 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
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.