In my previous post on this subject, I discussed the current ballot initiative that Massachusetts voters will have the opportunity to vote on in November. Specifically, I wrote of what opponents of this measure have had to say in “justifying” their opposition to a measure that I and many others feel no rational person could honestly object to. When will these pious “moralists” wake up and realize that this measure, like legal measures in Washington state and Oregon, would simply give terminal patients the right – if THEY elect to and NO ONE ELSE – to ask physicians for medication to bring about a peaceful death if THEY find that THEIR suffering – whether mental or physical – is unbearable and cannot be relieved. As Marcia Angell, Senior Lecturer at Harvard Medical School, has said: This option is not a choice of death over life, but of the timing and manner of an already inevitable death.

Personally, I don’t think this measure goes anywhere near far enough in terms of expanding the class of patients who would receive the right to request such medication from a physician: The proposal only gives this right to patients who have been certified by multiple physicians as having no more than six months to live. While I certainly support that approach very much, what of the patient who has been diagnosed with a terminal illness and is suffering mentally or physically as a result of that disease – but will not likely die for years due to the particular nature of the disease involved? Two obvious examples: Lou Gehrig’s Disease (otherwise known as ALS,) and Alzheimer’s Disease. These are diseases that slowly and horribly rob the patient of his or her dignity and purpose in living, but don’t produce actual death for perhaps many years after diagnosis. Lou Gehrig’s Disease slowly destroys the body’s muscles from the extremities, inward: It starts from the fingers and toes, until it reaches the heart and lungs. Victims can expect to be slowly robbed of their ability to enjoy life, until they are completely and totally incapacitated, diapered and catherized, unable to move at all. In almost all cases, victims can expect to be suffocated to death, as their lung and chest muscles will no longer be able to expand and contract to take in air.

The duration of this process until actual death takes place? Usually several years – perhaps as many as five to seven or more. If such a patient wants to endure this experience until the very end, that is his or her absolute right. But what is such a patient to do if he or she receives such a death sentence and decides that they don’t wish to die in this prolonged, horrible way? What if such a patient were a portrait artist or concert piano player, and decided that after he loses the use of his arms, he does not wish to go on? Or a lifelong marathoner who decided that after he lost the use of his legs, he did not wish to endure the further suffering to follow? Under this proposal, these patients would have no options until the point arrives where multiple physicians are willing to state that they have no more than six months to live. That could involve years of mental and physical suffering.

Alzheimer’s Disease patients face an arguably even worse fate: This disease cruelly and slowly robs its victims of their memories and personality, week by awful week, month by sorrowful month, until the victim is literally nothing but a shell of their former self. All that was within the victim which made him or her who he or she was, is stripped away, slowly, until all that remains is a physical body – hollowed out from the person who used to exist within. From the time the disease is diagnosed, no future exists for the victim but psychological and emotional suffering on a scale that cannot be described. From the first symptoms of this disease – routine memory lapses – to the end stage where the patient is delusional, institutionalized in a nursing home and death mercifully comes, the course is universally unimaginable: Friends names are forgotten; memories of precious times together are erased; the victim’s spouses and children become complete strangers. Stop for a minute and just try to imagine what it would be like for you to one day look at your spouse – the love of your life – and ask, “What’s your name?”

As the destruction of the mind and the intellect proceeds, personality type completely changes – aggression and delusion are typical; self-care disappears; an infantile personality replaces the intelligent, independent adult. The patient – sometimes as young as 50 – must be fed like a baby, changed, bathed, diapered. Eventually, all purposeful, rational intellectual activity is destroyed – even the ability to eat. To keep the patient “alive,” surgery is usually ordered to cut into the stomach and place a feeding tube, where liquid nutrients as poured directly into the stomach because the victim cannot even chew or swallow anymore. Strapped in a wheel chair or bed 21 or 22 or so hours a day, without any idea who he or she is, who their family and friends are, or where they are, the story is tragically always the same: An inexorable decline of all memory and personality, until death mercifully comes to claim the body, years and years after meaningful, cognitive functioning has ceased to exist, and years after horrific mental suffering and the loss of the patient’s dignity.

How long can this process take? Often, up to ten years from diagnosis. Now assume that it is YOU who have been diagnosed with this disease. And what awaits you is this slow, mentally tortuous rape of the mind – with no cure. Note: Do NOT be fooled by pharmaceutical companies’ ads claiming to provide any meaningful ‘treatment’ of this disease. There isn’t any. The highest and best results that have ever been achieved have seen some very temporary, extremely modest delay of the progression of symptoms. But – and understanding this point is extremely critical – nothing can be done to stop the progression of this disease.

How is it that any rational, compassionate person can oppose the inherent, inalienable human right to direct one’s own end of life, to avoid such unspeakable suffering, and the larceny of one’s dignity? I’ll answer that question in my next, and final, post on this critically important topic. In the meantime, as a Massachusetts patients’ rights lawyer, I urge you to please visit or contact Dignity, to find out what you can do to help assure passage of this most modest of measures on this issue.

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