VSED (Voluntarily Stopping Eating and Drinking)

An article in today’s New York Times http://nyti.ms/1yF5WRr   quotes me in a somewhat ambiguous way.  The topic is how to avoid a prolonged death from dementia, when “there’s no plug to pull.”  The article focuses on people whose advance directives call for VSED when they are demented. In other words, once they meet certain criteria such as not recognizing family members, don’t offer them food or drink.  But that’s pretty hard to envision.  Typically, the person would be hungry and interested in food, and would no longer remember why she had asked not to be fed.  Who could refuse food to someone under those circumstances?  And would the term “voluntary” even apply?

Paul Menzel and others take a more conservative approach, advocating for VSED when the person is in the final, most severe stage of dementia, including not being able to walk, speak, or feed herself.  In my opinion, that’s far too late.  When people speak about why they don’t want a prolonged death from dementia, they usually talk about loss of dignity, burden to family members, having some control over the narrative arc of their life and of how they are remembered, and so on.  By the time you are in severe dementia, you have probably lost those things a long time ago.  (The average span between diagnosis and death from Alzheimer’s is eight years.)

I remain convinced that once you are in even the early stages of dementia, it is too late to take action.  That’s why I argue for pre-emptive suicide.  I am hoping that the new biomarkers that seek to define your risk for Alzheimer’s before you become symptomatic, can help people who think like I do to “get out while the getting’s good.”

I am adding some of my academic work on this topic, for anyone who is interested–academic but still readable, I promise:

Alzheimer’s Disease and Pre-Emptive  Suicide  

Why Suicide Is Like Contraception: A Woman-Centered View

Advertisements

6 thoughts on “VSED (Voluntarily Stopping Eating and Drinking)

  1. Hi Dena, I feel very similar to you. I would like to have the option of making an advanced directive for euthanasia, and to be able to state exactly under what circumstance I would like to no longer go on living (I am thinking particularly of dementia). if the law allowed you to do this, and you could be certain your wishes would be acted upon, there would be no need for pre-emptive suicide. Are there any groups campaigning for this goal? I would also like it to be compulsory for doctors (or other specialist) to follow your wishes. The current British Law is a long way away from being able to do this. I read an article from the Netherlands about this topic (http://www.medscape.com/viewarticle/744961) that concludes that the advanced directives are NOT followed unless the patient is competent to confirm their wishes, which kind of misses the point of them altogether.

    Like

    1. In Belgium, euthanasia is allowed even for people who are no longer competent, but I think that’s the only country. The problem is that people who are advocating for the lesser goal of legalizing assisted suicide (as in Oregon, for example) want to cling to a very circumscribed set of criteria, for political purposes. Those criteria include that the person is competent and terminally ill, which makes it useless for diseases of dementia.

      Like

  2. I was glad to see your comment in the Times, and I would like to read your articles on pre-emptive suicide. Can you please post links to those here? I have signed up to see your posts.

    My own views in favor of VSED, outlined in this brief article
    http://www.badgirlchats.com/happy/
    seem still to be in a tiny minority.
    Best wishes.

    Like

  3. I’ve never seen the term “pre-emptive” suicide,” but I think it perfectly describes the dilemma faced by those who suffer from chronic, progressive, degenerative diseases that will ultimately render them powerless to act of their own behalf. Not only Alzheimer’s, but ALS, Parkinson’s, MS, or any condition that eventually prevents the patient from having the physical or mental capacity to carry out his or her stated wishes as a mentally competent adult suffering from a terminal illness.

    As a caveat, the early stages of dementia, or any of these tragic degenerative diseases, is not too late to act but the exact right time to act. It is a high wire balancing act to find the tipping point between being yourself and losing yourself, still having the capacity to act and passing the point of no return. Finding the sweet spot would not be so difficult if aid-in-dying could come out from the shadows and patients and their family members could turn openly to their physician for guidance without fear of prosecution.

    Like

    1. Hi–I agree with you–it would be a lot easier to find “the sweet spot” if that were considered an appropriate goal! I don’t think the main problem is fear of prosecution, however. I think physicians have an inflated sense of their power–if they give information and the recipient uses that information to plan to end their life, the physician feels responsible. Even today, some geneticists are reluctant to tell people at risk of Huntington Disease the (positive) results of genetic tests if they fear those people will respond by planning their suicide.

      I find this business of acting while one is in the early stages of dementia rather puzzling. Last spring’s obit of Sandra Bem, the eminent feminist psychologist, said she “peacefully ended her own life at her home in Ithaca on May 20, 2014, one month before her 70th birthday. She had been diagnosed with Alzheimer’s Disease in 2010, and made known at that time her intention to end her life while she could still do so without assistance if and when the disease became too debilitating for a meaningful quality of life.” But I wonder how she stayed focused on her goal while experiencing dementia, and what role her husband played. I remember that my mother, who died last spring at age 99 after perhaps 10 years of dementia, had lots of trouble in the very early stages (when she could still drive and live independently) sticking to a plan, even something as pleasant and easy as getting a cat.

      This issue comes up dramatically in the novel STILL ALICE, on which the current film is based. I mean to blog about this once I have seen the film.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s