Exploring Compassion & Choices’ approach to dementia, Part 2

In its new “Dementia Values & Priorities Tool,” Compassion and Choices (C&C) helps people clarify their wishes if they acquire dementia.  They offer a satisfactory, though limited, list of dementia-related symptoms (discussed in Part 1).  I have identified a few other (or slightly different) symptoms that are important to me in the event that I lose the ability to hasten my own death because of dementia or some unexpected reason, such as a stroke or other event that renders me incapable of carrying out a hastened death, namely, the loss of the ability– 

(1) to read and understand a major daily newspaper, 

(2) to make meaningful choices about the foods I consume, 

(3) to recognize and identify my immediate family members (spouse, daughter, granddaughter),

(4) to enter into contracts, and 

(5) to write with comprehension

(6) to make medical decisions for myself 

And there are other losses of ability that some might want to consider– for example, the loss of ability–

(7) to give consent to sexual activity with another

(8) to sleep through the night (a problem for many dementia patients)

(9) to not engage in disruptive behavior more than a specified number of times in a 24-hour period (for example, yelling, cursing, unprovoked anger, hitting, spitting, or other assaultive conduct), regardless of whether it can be managed with drugs

(10) to recognize where I am or what day it is for a period of at least _______ weeks

(11) to engage in coherent conversations

(12) to choose proper clothing for the season or the occasion

(13) to not wander or become lost

(14) to engage in daily activities and manage personal care without round-the-clock assistance

(15) to walk, sit, and swallow

None of these conditions may be important to you (and you may think of others), but the ones I have chosen are important to me because they will indicate I have reached a point in dementia beyond which I do not want to live.  They are value judgments–my judgments for myself.  The abilities provided by C&C are based on values it has identified, but they do not always represent mine.  For example, engaging in disruptive behavior may be controlled by drugs, but I don’t want such psychoactive drugs and will be ready to die should they be necessary to control such demented behavior.  All of us must make these choices for ourselves.

If I value not being an unnecessary burden for my family, that means for me that once I am no longer able to care for my basic needs and function at a satisfactory level (as identified by my list of symptoms), I do not want anyone to have to care for me.  That is when there will be no meaning or quality in my life and I will want my life to end.  Others will not have this same value, but I refuse to be shamed into changing this value by those who do not share it.  Not wanting to be an unnecessary burden is a widely accepted value among those who choose to use right-to-die laws in the ten jurisdictions where that is available.

To clarify this value further, I will note that I have been a burden on my spouse several times in the last few years after several major surgeries, including those to repair my back, have two knee replacements, and one hip replacement.  After recovery from anesthesia each time, I was cognitively intact and both of us could see an end to my being a burden.  In such cases, I was a necessary burden.  If we were wealthy enough (or I qualified for disability benefits), we could have hired someone to share or take over the burden of caring for me.  I can accept being a burden when I have the cognitive capacity to find meaning in life.  Otherwise, I don’t want to be a burden on anyone.

I provide in my own advance directive that the loss of three or more of the abilities I have identified will trigger my Supplemental Directive with respect to dementia or some other permanent neurological condition.  My advance directive is aimed at forgoing medical treatment should I develop some other life-ending condition.  But without such a condition, my supplemental directive provides that I be allowed to stop eating and drinking.

C&C mentions that some long-term care or “memory care” facilities may not support voluntarily stopping eating and drinking (VSED), so this issue should be discussed with such facilities before residing there, and acceptance of the directive should be made a part of the contract with the facility.  I agree that screening a long-term care facility is essential; however, my own supplemental dementia directive is written in such a way that I should never reside in such a facility.  If I get to the point that I need to be institutionalized for dementia, my symptoms should have already triggered my decision for VSED, leading to my death.

Another problem with VSED not covered by C&C’s explanation of the use of VSED is that we do not yet have the legal authority that will require such advance directives to be honored.  However, the legal strategies provided in the articles referenced in this post (including those at the end) should help assure that they will be followed.* 

For example, I provide in my own VESD directive that hand-feeding is medical care because, by regulation, it requires special training to learn how to do it safely to avoid choking and aspiration of food into the lungs.  Further, it will be an assault on my body if it occurs because I do not agree to unwanted touching (which can happen by both direct contact by another person or by an implement held by another), and my medical agent is specifically directed not to allow such touching.  Such assaults are tortious conduct that can be remedied by a court. 

Finally, we return to the failure of C&C to recognize our rights as Americans to end our own lives on our own terms.  A peaceful way to do so is by the use of inert gas–the method taught by the Final Exit Network.  In addition, FEN is gathering more data about the successful use of a common substance that can be ingested and result in a peaceful death no more complicated than ingesting the lethal prescriptions provided by doctors in states with right-to-die laws.  More about this substance can be found in the Peaceful Pill Handbook, available from Exit International through an ebook subscription.

I don’t encourage anyone to end their own life.  I speak often with people who are at a point where they wish to do so, though they do not qualify for training to do so under FEN’s extensive guidelines.  I encourage those who appear to be distraught or mentally ill to seek help from counselors and suicide prevention services, and I provide resources if they will accept the information.

But there is no reason C&C should withhold the information that hastening one’s death is legal everywhere in the United States, and such deaths do not have to be violent, painful, or gruesome.  C&C’s failure to provide this information is a serious misjudgment by its policy-makers.  It has led the organization to choose a lack of candor, instead of telling the public the full truth about the end of life for those who are suffering needlessly.

[Addendum:  Writing one’s own dementia advance directive or supplemental directive is discussed on this blog here, here, here, and here.]

• A new Nevada dementia VSED advance directive and its implications for people in other states will be discussed by Thaddeus Pope in next week’s post.