My advance healthcare directive for VSED to hasten my death in the event of dementia

[gleeson]

I hadn't known anything about VSED (voluntarily stopping eating and drinking) until I read about John Rehm (husband of NPR host Diane Rehm) using it to hasten his death when Parkinson's left him unable to use his arms or legs. Now I'm changing my will to insert a directive that my health care proxy use it in the event I end up cognitively non-functional due to dementia, stroke or whatever. For more details, see bit.ly/1Ib02N4

[zawy]

Good idea, although I wish there were easier pill or injection alternatives. Thirsting will only take a few days, but is probably pretty painful.

[gleeson in reply to zawy]

Friends of mine watched a friend of theirs go through this. The hospice kept their friend sedated and comfortable throughout the process.

[grower in reply to zawy]

Totally agree wish there was a pill, my mother took 7 days to die once she stopped eating and drinking/went into a coma and each day felt like months for my dad.

[JohnPepper]

Hi Gleeson. This is a very sensible way to end one's life. I remember witnessing an old lady of 95, who lived in the same retirement village with us. She was diagnosed with terminal cancer. She simply booked herself into the Frail Care Centre and told the matron that she did not want to eat anything, nor take any medication, only drink water. Within 3 weeks she died, gracefully and peacefully. She was a lady through and through, and a very sensible one at that.

John

[isis6361]

Many people with these directives are using them in the UK from diagnosis to create a care pathway, it's important that the person living with their parkinsons and their family are in control of their lives including treatments from diagnosis. Some find that if they have the end sorted out it makes living with the condition more controllable and once they have taken control of one end they then intend to be empowered to 'chair' their pathway of care.

[gleeson in reply to isis6361]

I've copied your remarks and those of others as comments to my original post. Thanks.

[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!

[gleeson in reply to FMundo]

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.")

[isis6361 in reply to FMundo]

It's about being prepared and in control. Dementia vary as per individual and those with dlbd fluctuate. Decision making and being in control is so important

[Hikoi]

Gleeson having read your blog I am thinking that some of it Is what Hospice is about..... No heroics, and dignity to the end

Cicely Saunders founded the first modern hospice and, more than anybody else, was responsible for establishing the discipline and the culture of palliative care. She introduced effective pain management and insisted that dying people needed dignity, compassion, and respect, as well as rigorous scientific methodology in the testing of treatments. She abolished the prevailing ethic that patients should be cured, that those who could not be cured were a sign of failure, and that it was acceptable and even desirable to lie to them about their prognosis.

She put paid to the notion that dying people should wait until their painkillers had worn off before they received another dose, and scotched the notion that the risk of opiate addiction was an issue in their pain management.

Cicely Saunders became, and perhaps always was, a grande dame and natural leader, and established a reputation in the national consciousness almost on a par with that of Florence Nightingale. She became a folk hero after the journalist Victor Zorza and his wife wrote a persuasive and moving account of their daughter’s death in a hospice.

In 1967 she founded St Christopher’s Hospice in south west London. It is now one of many but is still the leader in the field. It was her personal achievement and has been imitated all over the world. St Christopher’s was the first modern hospice, although there were a number of homes in existence for the dying, most of which were run by religious orders. She raised the funds for the hospice and contributed some of her own money.

Saunders introduced the idea of "total pain," which included the physical, emotional, social, and spiritual dimensions of distress. She regarded each person, whether patient or staff, as an individual to the end.