Compassionate, informed advice about healthcare decision making

Archive for June, 2013

Videos of Your Future with Advanced Illness

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What if every person with advanced illness could see a video of what their future would look like? Say, a video of CPR being administered and its aftermath of a breathing tube forcing air down a patient’s throat? Or an honest movie picturing what advanced dementia looks like?

If patients and families could see such a video, would it make a difference in the medical treatments they might choose or refuse as the disease progresses?

These questions are being answered and these videos are available right now.

A mission of producing realistic videos of advanced illness

Last week, NPR radio talk show host Diane Rehm hosted a program “Making Better End-of-Life Care Decisions.” Two of her guests were Drs. Angelo Volandes and Aretha Delight Davis, both of the Harvard Medical School. They have a mission of producing realistic videos of what advanced illness looks like and actual footage of treatments like feeding tubes and ventilators.

They have started Advance Care Planning Decisions (www.acpdecisions.org) to produce and distribute these videos. Go to their website to see a sample video and read the research.

The bottom line on the research is that when patients and/or their families see videos of actual treatments, they are more likely to refuse the treatment than if a physician just explains what the treatment is like. It is the old a-picture-is-worth-a-thousand-words adage.

The aftermath of some life-prolonging treatments

The Atlantic ran a great article on the whole video project, “How Not to Die” by Jonathan Rauch.

One of the things I like about what I see here is the depiction of the aftermath of some life-prolonging treatments. Take CPR, for example. Successful resuscitation attempts are rare. “Successful” being defined as “the patient did not die.” At best, the procedure is successful only about 15% of the time. What is hidden in the “successful” statistic is that half of those survivors have brain damage following the interruption of the blood flow to the brain. AND, what you see in the video, the patient is highly likely to be hooked up to a ventilator (breathing machine) after being resuscitated.

So the combination low survival rates, the likelihood of brain damage, and increased chance of being tethered to a machine cause many people to pause before telling the medical team to “do everything.” We now have videos to show what all the words have been trying to convey. What a great contribution of Drs. Volandes and Davis!

The Death Cafe

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Okay. You say, “Only a hospice worker would find the idea of a ‘death cafe’ exciting.”

These events are happening around the world. Yes, people sit down, have a cup of tea, coffee or adult beverage and talk about death and dying. If you are interested check out the website “Death Cafe.” Of course they are on Facebook and Twitter @deathcafe.

Let us deprive death of its strangeness

This all reminds me of Montaigne’s words from over four centuries ago.

“To begin depriving death of its greatest advantage over us, let us adopt a way clean contrary to that common one; let us deprive death of its strangeness; let us frequent it, let us get used to it; let us have nothing more often in mind than death. At every instant let us evoke it in our imagination under all its aspects….To practice death is to practice freedom. A man who has learned how to die has unlearned how to be a slave. Knowing how to die gives us freedom from subjection and constraint. Life has no evil for him who has thoroughly understood that loss of life is not an evil.”

Michel  de Montaigne,  c. 1580-1595

A reluctance to talk about death and dying

What I find curious is that Montaigne even had to make this statement. His contemporaries had to be surrounded by death all the time with the lethality of infectious diseases and high rates of infant mortality and high rates of mothers dying in childbirth. Yet, he must have observed a reluctance to talk about death and dying.

Now we hide death in hospitals and nursing homes and fortunately infant and childbirth deaths are rare. I can see why it is so easy to avoid death today. But even in the 16th century talk about death could be avoided.

Lift a cup to death and dying.

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