Pulling The Plug

April 18, 2012

Patient advocate and advance care planning pioneer Myra Christopher shares the background and personal motivation behind a ‘cultural change’ in medicine

 


“I want you to pull the plug.”
This somewhat crass but pervasive reference to end of life decision making is so familiar that it might be difficult to imagine not having the right to refuse medical treatment.   Myra Christopher, founding President and current Kathleen M. Foley Chair for Pain and Palliative Care at the Center for Practical Bioethics, however, remembers well.  She has been on the front lines advocating for and helping to draft policy for patient self-determination since the 1960’s.  We sat down with her on the eve of the 19th Annual Shallenberger Lecture in Ethics to get some background on the issue and the roots of her personal passion for patients’ rights at the end of life.

 

Berman Institute: First, some basics – what is meant by ‘advance care planning,’ and why is it so important?

 

 

Christopher: Usually, advance directives are about refusal of treatment. But it’s fair game, in my opinion, for people to say in an advance directive ‘I want it all.’  And it’s fair game for people to say ‘I don’t want one,’ for whatever reason they may have.

 

The history of advance care planning has, in many ways, been parallel to an important time in medical history.  The impetus for advance care planning was that we had this newfound capacity to support bodily function almost indefinitely, and we didn’t really know what to do with that.  The law and ethics almost always run behind the technology; science charges ahead, and then people are trying to figure it out.  As a society we thought the way to deal with this was a legalistic solution.  It was about passing the laws, having notaries and witnesses and gold seals.  That’s not what this is about.  This is really about coming to a place in medicine where almost everyone understands that the only way to know if you are making the right choice for someone is if you know what their values and their goals are. Then you [as a medical professional], with your knowledge and expertise, support them in a shared decision on how to best honor this person.

 

BI: How did you get started working on advance care planning?

 

Christopher: The Center for Practical Bioethics started a hospital ethics committee consortium in 1986, which meets every other month and is now the oldest in the country. Over and over people would come to the meetings with terrible cases of very frail, elderly people who were rushed to the emergency room and they ended up in terrible situations, were the wishes of the family and sometimes even personal physician were not being followed – heartrending tales.   And I said, “I think we can fix that.”

 

So we [at the Center for Practical Bioethics] decided we would bring together the Bar association, the med society, the nursing association and faith leaders together and that we would, as a community, come up with a single living will document that would be recognizable in any institution, and get volunteers who would do community education about this.

 

But when we were ready to figure out how to market this and “entice” people to talk about end of life issues, the Cruzan case became a matter of public debate and discussion. And so we didn’t need to market…anything. It was sort of omnipresent in the community.

 

Through our work with this community group – which we think was the first community-based approach to advance care planning in the country – we were asked to help draft legislation for the Patient Self-Determination Act.

 

BI: Why is this an important issue, in general, and for you personally?

 

Christopher: I do the work that I do because of the illness and death of my mother, when she was in her early 50’s.  She died of a rare stomach cancer in 1975.  There were no hospices at that time.  We wanted to honor her wishes, and she wanted to die at home.  And so we did… it was quite, quite a challenge.  My mom really directed her care, and we did it her way.  Although it was incredibly difficult, it really was a very powerful time in the life of my family.

 

And so, I stood at my mom’s graveside on the ranch where she grew up, and I promised myself that I would work on this for the rest of my life. And I’ve tried to be true to that.

 

So patient rights were really my introduction to this issue, and I think that is why it is so important – because the voice that never gets included is the voice of the person struggling with illness, and/or their family. If you really want to address ethical issues in healthcare, if you really want to reform policy, you absolutely have to have the knowledge of those who have lived these issues, and experience the vulnerability and the losses.

 

BI: The question we put to you for this lecture was, “how do we close the gap?”

 

Christopher: Well, the reason I’ve written the end to this [lecture] three or four times is it depends on what that question implies.  If you look at the most recent data from the CDC, about whom this is most relevant – elderly people with advanced illness – the numbers [of people with and advance directive] are as high as they are going to get. They almost all have them.

 

The numbers we keep coming back to [low percentages of people with an advanced care plan] refer to the general adult population, 18 and over. The cases that make news, like Terri Schiavo, Cruzan, Quinlan – those are anomalies.  The real issue is elderly people with multiple chronic illnesses, in the last chapter of their lives.

 

Really I think the most important thing is that we’ve seen a cultural change in medicine itself.Mike Garland at the University of Oregon Health Sciences has said to me over the years, “Quit fretting about the number. What you’re really looking for is social transformation and cultural change, in medicine and in society at large.” And by and large, people get it.

 

BI: We have made progress, but we still have some of the same issues we started with, like naming a surrogate and having meaningful conversations.  Isn’t that part of the gap?

 

Christopher: This is what we’re doing at the Center now, not focusing so much on personal declarations, but supporting people to have meaningful conversations and for them to designate a surrogate.  But the real energy and attention of our work right now is on educating and supporting surrogates.  I mean, it’s a god-awful job.

 

So that’s really where I think I want to end the lecture, because that’s really where we should be focusing, on the surrogates.

 

BI: What message do you hope that people will take away from your lecture and from National Health Care Decisions Week?

 

Christopher: My work has fundamentally been about helping people finish their life story in a way that is consistent with who they are and their values and what they care about.

 

When I started on this, the greatest good in medicine was to prolong life.  But when you wed that with the biotechnology to prolong bodily function indefinitely, you end up with these nightmarish scenarios.

 

The real goal here is changing the culture of medicine – the greatest good is not prolonging life but honoring a person’s goals and values, and providing them the care and support and services they need to do that.

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