April 3, 2015

How To Draft a VSED Advance Directive for Hastening Death in the Event of Dementia

In yesterday's post, we discussed an emerging debate about advance directives: Should people be able to request -- and count on -- VSED (voluntarily stopping eating and drinking) in the event of future dementia?

Today, let's consider several possible ways to draft such a directive.

Natural Dying Living Will
California psychiatrist Dr. Stanley Terman specializes in end-of-life decision-making. He has developed a "Natural Dying Living Will" that he describes as "an ironclad strategy" for dealing with advanced Alzheimer's dementia and unbearable end-of-life pain.

Dr. Terman explains his approach in this video:



If you go to YouTube and search for "Dr. Terman"and "living will," you'll find other videos with additional details. You can visit Dr. Terman's "Caring Advocates" website to order the living will planning documents and videos.

The End-of-Life Healthcare Directive I Plan To Use
I'll probably end up using a simpler, easier process. Recently, I was talking with a friend about VSED and advanced directives for dementia. For several years, he's been undergoing treatments for cancer.

He shared with me the end-of-life healthcare directive he has in place, and I really like it.

His directive includes using VSED in the event he becomes incapacitated by dementia. It also addresses other major end-of-life healthcare treatment issues. I agree completely with his directives for handling these issues.

So, with a few minor adaptations, I'll authorize these provisions:
END-OF-LIFE DECISIONS: I direct that my health care providers and others involved in my care provide, withhold, or withdraw treatment in accordance with the following:
(A) I direct that no life-sustaining procedures be started, and if started, that they be withdrawn if (1) I have an incurable and irreversible condition that will result in my death within a relatively short time, (2) I become unconscious and, to a reasonable degree of medical certainty, I will not regain consciousness, (3) I undergo a marked lessening of my cognitive powers due to dementia, Alzheimer’s disease, stroke or a sudden and permanent brain injury, or (4) my Agent believes the likely risks and burdens of treatment will outweigh the benefits.
(B) My body has been seriously weakened by a progressive disease. If life-sustaining treatment of any kind is not expected to return me to the physical, emotional, and mental competence needed for me to live independently, then I direct that such treatment not be given or be withdrawn. I do not wish to be resuscitated.
(C) If pain medications fail to relieve all pain; major weight loss occurs; lack of appetite appears to herald cachexia or anorexia; break-through abdominal pain or delirium occur; or I fail to recognize medical staff or friends, for example, I direct my Agent to withdraw all life-sustaining treatment and, further, to ensure that I do not receive any fluid or food, whether by IV, tube feeding, or otherwise. I wish to die by voluntarily stopping eating and drinking (VSED).
(D) If any of the conditions described in (A) or (B) or (C) above is present, I direct that I not be given CPR, blood or platelet transfusion(s), artificial nutrition whether enteral or parenteral, dialysis, surgery, resuscitation or any other life-giving or life-sustaining treatment and that I not be placed on a ventilator or given intrusive diagnostic tests, including those requiring drawing my blood. My wish is that I be allowed to die quietly by voluntarily stopping eating and drinking (VSED).
(E) Treatment for alleviation of pain or discomfort is to be provided at all times, even if it hastens my death or makes me lose consciousness.
(F) I wish to be kept fresh, clean and warm at all times. I direct that my Agent consult with a palliative care physician and that all recommended palliative procedures to ease my physical and emotional suffering be instituted. These include frequent position changes and meticulous oral, nasal, and conjunctival hygiene. In this respect, insertion of a urinary catheter should be considered by my physician. I do not wish to be provided oxygen except as a palliative measure.
(G) If I am in a hospital, I direct my Agent to transfer me to a private room in a palliative care wing. If I am not in a hospital or if transfer to the palliative care wing is not possible, I direct my Agent to transfer me to a private room in a skilled nursing facility that agrees to follow these instructions.
I plan to contact a local hospice that gets good reviews to learn if they have any problems with this directive, or their ability to honor it. If they see no problems, I'll change the final paragraph -- (G) -- to name that facility as the place to which I'd want to be transferred for palliative care.















5 comments:

margaretswope said...

If it is alright, I would like to paste this on my blog as well as a link to your sight.
You are such a good writer.
Your friend, Margie

John Schappi said...

No problem.Thanks for your kind words, Margie.

John Schappi said...

Here's a comment that appeared first in the Parkinson's forum of healthunlocked.com, a very good forum that is based in the UK and gives the Brit perspective.

FMundo
You have given us a great gift by sharing this directive. Another consideration, which I have spoken to with my wife and children is my wish not to receive antibiotic treatment for pneumonia if I have dementia, unless I request it.

The type of Parkinson's that I have (PIGD) has a 70% probability of involving dementia. Since a majority of PD folks die from pneumonia caused by aspiration of food into the lungs (due to loss of ability to swallow the right way), it seemed logical to me to rely on "the old man's friend" to take me away. I figure with dementia I won't have the good sense to "request" antibiotics. And if I don't have dementia I guess I'll have to fake it.

Probably my greatest concern with having Parkinsons is being hopelessly ill with dementia in a "nobody home" state whilst vast sums of money are being spent keeping me alive that spends down financial resources really needed to support my wife ongoing. Figuring out how to engineer a "departure" in future when one is incapacitated is a huge worry for me, and I suspect others in similar situations.

Some (I suspect many) physicians "help things along" with morphine administered near the end but obviously this is done only after things have gone terribly far with considerable suffering. In short relying on this is not a good idea.

What your Advanced Directive has done for me is to offer me a "heads up" that I need to put my wishes/instructions in writing... and probably incorporate the VSED scenario as well. Thank you!
==========================
Here's my response:
Thanks! You've provided a great description of the No. 1 fear we both share. I'm adding it as a comment to my post on this so others can benefit from your wisdom. (Any observation, such as yours, that I agree with 100 percent is automatically classified as "wisdom.")

Stanley A. Terman, PhD, MD said...

I see several problems with the "simpler, easier process" advance directive offered in what is really a great beginning for a conversation started by John Schappi (Blogger, diagnosed with Parkinson's).

1) Stating what you want is only half the solution. The other half is putting in place, strategies that will make sure others--especially your future physicians--will honor your requests.

2) "VSED" (Voluntarily Stop Eating and Drinking" is the wrong term--both legally and clinically. Advanced Dementia patients lack capacity to Voluntarily consent to anything. When the intervention of "Natural Dying" is implemented, they will NOT have been eating and drinking which can then stop. Instead, they will have been receiving assistance with hand-feeding/drinking by another on which they are dependent--which is LEGAL to withdraw. But it is ILLEGAL to withhold food and fluid as it carries the risk of such charges as manslaughter and euthanasia.

I wish there were a simple and easy way that would be legal and effective, but after working with patients in this field for almost 20 years, I know of none. Example: Look what happened to poor Margo Bentley in British Columbia. Her husband and daughter requested her Living Will be honored in Nov. 2011, but it is still not being honored today!

The extra effort is worth it. The return on investment is a few hours saves a few years.

​Stanley A. Terman, PhD, MD
Board Certified in Psychiatry
Medical Director and CEO of Caring Advocates

www.CaringAdvocates.org
www.caringadvocates.org/NaturalDyingLivingWillCards
www.MyLastWishes.org

2730 Argonauta St.
Carlsbad, CA 92009
800 647 3223 or 760 431 2233
FAX: 888 767 6322
SKYPE: stan_terman (or 760 456 5633)
UK direct phone: 44 20 8123 7106
Australia direct phone: 61 03 9016 4284

John Schappi said...

Thank you very much, Dr. Terman. I want to spend much more time researching this issue. I've got the names of two doctors at the local hospice that assisted John Rehm with his VSED and will try to talk one of them. And of course I want to spend time learning more about Caring Advocates.

When I'm better grounded factually, I'd appreciate the opportunity to discuss this further with you.

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