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Helping people understand end-of-life choices -- are pictures better than words?

Posted by Dr. Lachlan Forrow  June 24, 2013 05:00 AM

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To ensure that for patients with a serious, advancing illness I am caring for them the way they would want me to, I need to know that they understand their choices, including what may lie ahead for them if they choose X or Y.

While that is so obvious that it may hardly seem worth saying, the truth is that in medicine we are much clearer about the "theory" of "informed consent" than we are about the practice. 

Even for the most skilled clinicians, it can be hard to be sure that a patient really understands what a procedure involves, or what life in different conditions might be like.  Would I want life-prolonging medical interventions if I had "advanced dementia"?

Our own personal experiences are extraordinary powerful, but can be extremely misleading -- one person's beloved relative with advanced dementia may have been happy and often a delight to be with, another's may have been trapped in an often confused and agitated hell that none of us would ever want to live in.  While clinicians can try to explain what might be ahead in words, it is often simply impossible to convey an understanding of what life in X or Y condition would be like.

That is why a very different approach, one that uses videos as a central tool for patient education, seems so promising to me.  One of the visionary pioneers of this approach is Dr. Angelo Volandes, whose work was recently featured in The Atlantic magazine, in an article titled "How Not to Die: Angelo Volandes's low-tech, high-empathy plan to revolutionize end-of-life care."  I have known Angelo for almost 20 years, first as a gifted student, and more recently as an admired colleague.  He is on to something very, very important.

Samples of some of the videos can be found on the website of the nonprofit foundation Angelo has created to support this work, Advance Care Planning Decisions.  Some involve videos of real patients, such as a woman with advanced dementia, trying to show what it is really like for them.  Others involve videos about what medical interventions are like (eg CPR, or "intubation"), showing with a mannekin exactly what is involved.

I have countless questions about the videos, as Angelo knows -- are they really fair presentations, or are they biased (making something look worse, or maybe less bad, than it usually is)?  For videos showing people with advanced illness, in states that I would be embarrassed to be seen in, how do we ensure that the videos are done with true respect for the people being seen?  Is it enough for a family member to give consent?  When you see the videos, you will have questions or comments, too.  

But my own experience looking at the videos is that they give me an understanding of things I want and need to understand, in order to make informed choices, that words can rarely, if ever, achieve.

This approach is still early.  We need many more people like Angelo making many more videos, and posting them on the web for comments and feedback.  We also need many more people using other approaches -- through writing (fictional and nonfictional), through art, and in other creative ways -- to help us understand what different medical choices might mean.   We need ways to finance the production and wide dissemination of high-quality tools that help us make good decisions, as organizations like Angelo's and the Informed Medical Decisions Foundation are trying to do.

No one's understanding can ever be truly complete -- no "consent" is ever perfectly "informed".  But we can do a much, much better job than we usually do today, and video and other tools can help us.

This blog is not written or edited by or the Boston Globe.
The author is solely responsible for the content.

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About the author

Lachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »

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