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What If We Declared a War on Elder Abuse?

Date April 26, 2017

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Diana in Venice

What will it take to raise the public’s awareness of the prevalence of elder abuse? Here is a recent New York Times article about a woman from Washington state, a granddaughter of a victim of elder financial exploitation, who has made her mission in life to secure further legal protection for vulnerable elders. I tip my hat to the Elder Law Profs blog for the mention of this article. For this post, I’m focusing primarily on financial fraud and exploitation of elders.

Colorado statistics over the last several years (since the change in law concerning mandatory reporting of elder abuse and investigation by law enforcement) indicate the numbers continue to rise dramatically. Read this Denver Post article from last fall with some of the breathtaking numbers in Colorado. The national numbers are a bit more complicated, due in part to the variances of state laws concerning elder abuse – not all states have made it a crime to financially exploit an elder, as well as how such crimes get reported. In Colorado, law enforcement and county adult protective services are part of the investigative framework for suspected elder abuse and some district attorneys’ offices have specialized prosecutors for such crimes. The federal law, the Elder Justice Act – about which I have previously written, could provide an important means for developing a more systematic approach to reporting (among other important things) remains only partly funded.

A 2011 study published by MetLife Mature Market Institute estimates the financial loss by victims of elder financial crimes and exploitation exceeds $2.9 billion dollars annually, but this number remains controversial as other studies have estimated $17 billion or $36 billion. Read about the variety of those numbers here.

How do we define fraud on elders? That is a big part of the problem with a lack of any “standardized” way to identify such fraud and abuse so as to generate reportable numbers for particular types of fraud and abuse. One thing that most are certain of is that the exploitation and fraud are both widely underreported –due to the shame and embarrassment factor, particularly when the perpetrator is a family member, friend or neighbor (occupying a position of trust).

Know the risk factors

Forbes recently ran an article by John Wasik that had a great summary of four of these which consider the elder’s behavior:

Poor Physical Health. Those who are physically compromised are unlikely to be focused on financial matters. They are often vulnerable to swindles.
Cognitive Impairment. When the ability to do basic things like read a banking statement or balance a checkbook declines, that’s when you have to pay attention. Those with declining math skills will not be asking important questions about new investing “opportunities.”
Difficulty in Activities of Daily Living. If a person has trouble feeding themselves, bathing or shopping, that’s a big set of red flags. That also means that they will have trouble managing money.
Social Isolation.Are they all alone? Then they won’t have the support of a network of peers, who could warn about scams.

Recognize the signs

The signs are of course numerous and varied, but keep in mind that there are many ways in which the behavior of the perpetrator of the fraud or exploitation of the elder mimics that of a perpetrator of domestic violence.

Use and abuse of control of the elder’s finances, such as taking, misusing, or using without the elder’s knowledge or permission their money or property;
Forging, forcing, or using deception, coercion or undue influence to get an elder person’s signature on a legal document – this could include signing over title to a home or other asset, or a power of attorney or a will;
Forging or otherwise forcing, or using deception or other inappropriate means to misappropriate funds from a pension or other retirement income, to cash an elder’s checks without permission or authorization;
Abusing joint signature authority on a bank account or misusing ATMs or credit cards;
Exploitation through a fiduciary relationship – such as an agent under a financial power of attorney acting beyond the scope of the agent’s authority, or improperly using the authority provided by a conservatorship, trust, etc.
Misleading an elder by providing true but misleading information that influences the elder person’s use or assignment of assets, persuading an impaired elder person to change a will or insurance policy to alter who benefits from the will or policy;
Promising long-term or lifelong care in exchange for money or property and not following through on the promise, overcharging for or not delivering caregiving services; and
Denying elders access to their money or preventing them from controlling their assets or gaining information about their assets.

Keep in mind that neither of these lists is comprehensive or exhaustive!

Report suspected abuse, exploitation or fraud

If you aren’t sure who to call and the situation doesn’t require a 911 call, use the National Center on Elder Abuse’s resource page to determine who to call.

The only way we will get a better handle on the extent and pervasiveness of elder financial abuse and exploitation is to become more familiar with it so that we know how to ask those whom we seek to protect.

Ethical Wills and “Legacy Letters” – an Overview

Date February 22, 2017

Posted by Barb Cashman

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Italian Marble

It’s been a few years (3 ½) since I’ve written on this topic, and a colleague recently asked me to speak on this at an event this fall. The fact is, I think writing an ethical will is another way of imparting meaning into our lives – whether we are young and healthy and writing to our young children about what we hold dear and hope to carry into their future, or we are old and sick and recording more of a legacy of a life lived. In my previous blog post, I described five different approaches to writing an ethical will: an explanation; an expectation; an affirmation; an historical document (think genealogy or heirlooms); and a statement of values.

In today’s post, I’m focusing on the last approach – a statement of values. An ethical will in this context is essentially a document which can serve to identify those values, that “something” to live for, which has sustained the author and given meaning and texture to the tapestry of one’s life.

The ethical will or legacy letter is the big picture view of what can be encompassed in estate planning. Keep in mind that the majority of Americans die without any estate plan in place. Many of those folks might simply respond to a question about any need for planning with a retort “I’ll be dead, so I won’t care” – but I think there is some fear lurking behind that otherwise lackadaisical sounding statement. . .

If one chooses to engage in estate planning by executing: powers of attorney which name others to act on our behalf in the event we are unable (which may include a conversation and some direction about how money should be spent for one’s care); a living will to express our end of life health care preferences; and a will which sets forth how our estate will be distributed then — is it really much of a stretch to go from identifying what you need to live to identify something to live for? I think not!

Here is a link to a website with some touching examples of ethical wills written by a variety of people. What I am suggesting here is that the ethical will can help us to live life more fully – read: by preparing to die – and as preparation to face the rest of one’s life, with whatever level of fear, exhilaration or trepidation that entails.

So here are some ideas to employ for that statement of values:

Describe who you have been or who you are now in relationship to your family of origin, your family of creation and perhaps your family of choice;

Write about those things that you hold most dear, what you are grateful for and perhaps also the things you regret;
Describe those principles, rituals, or teachings, etc., which have been important to you and explain why they hold such meaning to you; and
Write about aspects of your life and your values that demonstrate the meaning of your life, the experience of that meaning and how you have constructed the meaning(s) over the course of your life.

These are just a few examples of how, in the creative act of putting into words one’s life story, or describing the values one holds dear, one can construct a broader meaning and see connections of the disparate or seemingly disconnected parts of a life in new ways. The context or impetus for telling one’s story may be significant to the context of the story or perhaps not at all. Constructing a life story – even if it is only an early part of a life – is an example of how we as human are engaged in the search for meaning. I have always been fond of Ernest Becker’s term for our species – homo poetica or “man the meaning maker.”

This search for meaning, as well as our attempts to construct and our longing to impart meaning, can be a very useful tool for us at any age. The ethical will as an example can help us integrate our life’s experiences and help us see the “big picture” of the meaning of our life and the lives of others as well. It reminds me of Viktor Frankl and his logotherapy, based on “will to meaning.” Each of us, no matter what is the ease or difficulty we face in our lives, remain free to find the meaning in our own life. Writing an ethical will can help us construct that meaning.

Colorado End of Life Options Act Vocabulary part II

Date February 9, 2017

Posted by Barb Cashman

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Strange Orchid

So this is the second post examining our new statute. Today I’m focusing on a couple of its provisions which provide an intersection which I find quite troubling. Let’s look first at C.R.S. 25-48-103. Right to request medical aid-in-dying medication

(1) An adult resident of Colorado may make a request, in accordance with sections 25-48-104 and 25-48-112, to receive a prescription for medical aid- in-dying medication if:
(a) The individual’s attending physician has diagnosed the individual with a terminal illness with a prognosis of six months or less;
(b) The individual’s attending physician has determined the individual has mental capacity: and
(c) The individual has voluntarily expressed the wish to receive a prescription for medical aid-in-dying medication.
(2) The right to request medical aid-in-dying does not exist because of age or disability.

Seems simple enough, but did you read (2)? This (2) is particularly interesting as it looks to be intended to try and minimize criticism from two quarters: First from elders and those who work for and with them (like yours truly) who can both understand the quality of life aspects of the availability of MAID to frail and vulnerable elders; and can also see the connection between “duty to die” (remember Gov. Lamm?) and a “right to die” based on . . . . a perceived (by others) quality of life and use of scarce resources. This statutory language provides no comfort for me. Secondly, this (2) is also a vain attempt to disqualify criticisms from the disability rights community (folks like Not Dead Yet,) who challenge equating “quality of life” and “loss of autonomy” with “dignity.”

If you think I’m exaggerating the concern with ageism and loss of dignity of elders inherent in this statute, then simply turn your attention to §25-48-116 (Immunities for actions in good faith) which states at (3):

A request by an individual for, or the provision by an attending physician of, medical aid-in-dying medication in good-faith compliance with this article does not:

(a) Constitute neglect or elder abuse for any purpose of law; or
(b) Provide the basis for the appointment of a guardian or conservator.

Can the really say this?!! Does the provision of these broad and sweeping statements pertaining to elders or the disabled address the underlying issue and concern about potential for coercion or exploitation? I don’t believe it does at all – in fact it points out the law’s weaknesses here. Yet the proponents of the initiative denied and discounted any concerns from those who would question putting vulnerable elders at risk of being coerced and exploited.

The statute’s attempt to preempt any claim that another’s encouragement or assistance (I can think of several different dangerous scenarios off the top of my head) or “helping” someone with availing themselves of MAID would not constitute elder abuse, coercion, undue influence, or some other improper activity is shocking to me. The fact remains that there are a lot of elders who are not in good health who could easily be convinced to use MAID. Will the doctors be sensitive to this? Will they have the training and the resources to detect the “big picture” of what an exploiter may be attempting to gain from an elder who is simply trying to use MAID? These questions trouble me.

A recent case before the European Court of Human Rights (ECHR), Gross v. Switzerland, involved a Swiss national who sought physician assisted suicide on the grounds that she was old and adversely affected by the continued decline of her faculties. Previous ECHR decisions concerned the assisted suicide for persons who were seriously ill. Turns out there was a Swiss woman who did not have a serious illness but she had simply grown tired of living in her octogenarian body.

The concern about aging and quality of life is real and not imagined, especially based on this (quality of life) being one of the top reasons for Oregonians choosing death. It reminds me of the statistics about victims of elder abuse – that they tend to have their lives shortened by such abuse. Our statute would seem to affirm that the life-shortening on quality of life grounds is legitimate and simply a matter of one’s own “choosing.” It validates what many of us suspect, that if things don’t look like they will get any better for us, we might as well give it up and cut our losses. I’m thinking of a well written New Yorker article from June 22, 2015 entitled “The Death Treatment: when should people with a non-terminal illness be helped to die?” I’m back to my concern stated in my previous post about the power we have given over to our doctors, who now determine whether a person suffers from a terminal illness and is otherwise entitled to seek MAID. In Colorado, our law defines self-administration, but the statute has no explicit requirement that an individual self-administer. We don’t have to “jump” to any conclusions here – the path is just a baby step from self-administration to administration with some assistance.

So if we only think there exists a requirement of self-administration, then the line between a doctor prescribing MAID and the “delivery” of the drugs either through self-administration or with assistance (albeit often in the guise of encouragement) of others is a thin one indeed. I quote from The New Yorker article here:

The laws seem to have created a new conception of suicide as a medical treatment, stripped of its tragic dimensions. Patrick Wyffels, a Belgian family doctor, told me that the process of performing euthanasia, which he does eight to ten times a year, is “very magical.” But he sometimes worries about how his own values might influence a patient’s decision to die or to live. “Depending on communication techniques, I might lead a patient one way or the other,” he said. In the days before and after the procedure, he finds it difficult to sleep. “You spend seven years studying to be a doctor, and all they do is teach you how to get people well—and then you do the opposite,” he told me. “I am afraid of the power that I have in that moment.”

I am concerned that what the End of Life Options Act appears to offer folks is freedom of choice, but it is really more about the giving away of more power to our doctors as well as making segments of our population even more vulnerable to coercion. More later!

Colorado End of Life Options Act – A Vocabulary Lesson

Date February 2, 2017

Posted by Barb Cashman

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A Threshold

I’m gearing up for a continuing legal education program where I’ll be presenting on this new Colorado statute [EoLOA for short, even if it sounds more like Hawaiian], so I’m now writing part of my materials. I thought I’d start with the basics in this post by looking first at how terms are defined (or not defined) in the statute as well as the parameters of the “right to request” life ending drugs. I will list the entire definitional section here, but due to space constraints, will focus only on a couple salient terms in this post.

Here’s an overview of some of the key terms in the statute’s definitional section, 25-48-102:

Adult means an individual who is 18 years of age or older;
“Attending physician” means a physician who has primary responsibility for the care of a terminally ill individual and the treatment of the individual’s terminal illness.
“Consulting physician” means a physician who is qualified by specialty or experience to make a professional diagnosis and prognosis regarding a terminally ill individual’s illness.
“Health care provider” or “provider” means a person who is licensed, certified, registered, or otherwise authorized or permitted by law to administer health care or dispense medication in the ordinary course of business or practice of a profession. The term includes a health care facility, including long-term care facility as defined in section 25-3-103.7(1) (f.3) and a continuing care retirement community as described in section 5-6-203 (l)(c)(I), C.R.S.
“Informed decision” means a decision that is:

(a)Made by an individual to obtain a prescription for medical aid-in- dying medication that the qualified individual may decide to self- administer to end his or her life in a peaceful manner;
(b)Based on an understanding and acknowledgment of the relevant facts; and
(c)Made after the attending physician fully informs the individual of;
(I) His or her medical diagnosis and prognosis of six months or less;
(II) The potential risks associated with taking the medical aid-in- dying medication to be prescribed;
(III) The probable result of taking the medical aid-in-dying medication to be prescribed;
(IV) The choices available to an individual that demonstrate his or her self-determination and intent to end his or her life in a peaceful manner, including the ability to choose whether to:
- (A)Request medical aid in dying;
- (B) Obtain a prescription for medical aid-in-dying medication to end his or her life;
- (C) Fill the prescription and possess medical aid-in-dying medication to end his or her life; and
- (D) Ultimately self-administer the medical aid-in-dying medication to bring about a peaceful death; and
(V) All feasible alternatives or additional treatment opportunities, including comfort care, palliative care, hospice care, and pain control.
(6) “Licensed mental health professional” means a psychiatrist licensed under article 36 of title 12, C.R.S., or a psychologist licensed under part 3 of article 43 of title 12, C.R.S.
(7)“Medical aid in dying” means the medical practice of a physician prescribing medical aid-in-dying medication to a qualified individual that the individual may choose to self-administer to bring about a peaceful death.
(8) “Medical aid-in-dying medication” means medication prescribed by a physician pursuant to this article to provide medical aid in dying to a qualified individual.
(9) “Medically confirmed” means that a consulting physician who has examined the terminally ill individual and the terminally ill individual’s relevant medical records has confirmed the medical opinion of the attending physician.
(10) “Mental capacity” or “mentally capable” means that in the opinion of an individual’s attending physician, consulting physician, psychiatrist or psychologist, the individual has the ability to make and communicate an informed decision to health care providers.
(11) “Physician” means a doctor of medicine or osteopathy licensed to practice medicine by the Colorado medical board.
(12) “Prognosis of six months or less” means a prognosis resulting from a terminal illness that the illness will, within reasonable medical judgment, result in death within six months and which has been medically confirmed.
(13) “Qualified individual” means a terminally ill adult with a prognosis of six months or less, who has mental capacity, has made an informed decision, is a resident of the state, and has satisfied the requirements of this article in order to obtain a prescription for medical aid-in-dying medication to end his or her life in a peaceful manner.
(14) “Resident” means an individual who is able to demonstrate residency in Colorado by providing any of the following documentation to his or her attending physician:
- (a)A Colorado driver’s license or identification card pursuant to article 2 of title 42, C.R.S.;
- (b)A Colorado voter registration card or other documentation showing the individual is registered to vote in Colorado;
- (c)Evidence that the individual owns or leases property in Colorado; or
- (d)A Colorado income tax return for the most recent tax year.
- (15)“Self-administer” means a qualified individual’s affirmative, conscious, and physical act of administering the medical aid-in-dying medication to himself or herself to bring about his or her own death.
- (16) “Terminal illness” means an incurable and irreversible illness that will, within reasonable medical judgment, result in death.

So here goes . . . this law is only for adults! There is no provision for minors as is allowed in some European countries, like Belgium. Next, you’ll note that the physicians (they must be licensed M.D. or D.O., no N.P. or P.A. allowed) have a huge amount of responsibility. Remember that the gist of this law is to remove the threat of criminal prosecution for assisting a person to die by prescribing life-ending drugs under certain proscribed circumstances, so this focus on the doctors is wholly appropriate.

The two basic types of physicians are the attending and the consulting. The attending physician is the one who has primary responsibility for the care of the terminally ill individual. We are familiar with the phenomenon of the “pot shop” doctor here in Colorado . . . well this provision is designed to ensure that the attending is not someone who simply provides the scrip for the life-ending medication or “medical aid in dying” [hereafter MAID] as the statute calls it.

The attending physician must “fully inform” the individual of the diagnosis, prognosis of six months or less; as well as the choice (see (5) (c) above) and consequences of requesting MAID as well as the alternatives including additional treatment, palliative care and hospice care. Unfortunately for us, the terminology used in (5) is “informed decision,” which is a term foreign to Colorado law. In the statute it is tied to “mentally capable” in (10), which includes the ability to make and communicate an informed decision to health care providers. The Colorado term which is familiar to me is from the Colorado Medical Treatment Decision Act, at C.R.S. §15-8.7-102(7), which defines “decisional capacity” as the ability to provide informed consent to or refusal of medical treatment. A similar definition is found in the health care POA statute, at C.R.S. §15-14-505(4). The preceding section of that statute also states (at §15-14-504(4):

Nothing in this part 5 shall be construed as condoning, authorizing, or approving euthanasia or mercy killing. In addition, the general assembly does not intend that this part 5 be construed as permitting any affirmative or deliberate act to end a person’s life, except to permit natural death as provided by this part 5.

Interesting, huh? While reviewing inconsistencies between these terms describing capacity is something attorneys might get excited about, it appears unlikely to provide difficulties for the physicians involved. I will discuss the “mentally capable” determination a bit more in a later post that looks at mental health concerns. Likewise, the duties and responsibilities of the attending physician are numerous and I will continue the discussion of what the statute describes in a later post.

I will conclude this first post about statutory language with an observation. Death as described in the EoLOA is defanged, now a technical medical procedure, even a treatment if you will, for perceived intractable suffering. The option to seek out MAID to end suffering involved with a terminal illness has little to do with the physical pain incident to illness (statistics from Oregon bear this out) and more with the loss of dignity and quality of life, presumably incident to the progression of the disease. Why should an elder law attorney like me be concerned about this? Because in our culture, much of the experience of aging is focused on losses and precious little attention is directed toward gratitude for our continued life, such as it may be!

The other matter that concerns me greatly in the “technocratizing” of dying and actively choosing death is that we surrender even more power to our doctors. This has little to do with our perception of how medical technology is used to extend life, but rather is concerned with our thinking about the nature of life, including disease, dying and death. Our doctors cannot protect us from suffering – they are only doctors after all, but they can help manage treatment of pain.

More “vocabulary terms” next week.

End-of-Life Options: Medical Technique Portrayed as a Right pt. 1

Date January 19, 2017

Posted by Barb Cashman

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Ketring Lake at Dusk

For the next few posts I promise to vary my topics a bit, so I won’t be writing solely on the new Colorado law and its implications. But for this post, I wanted to spend a bit of time on the “big picture.” I had the privilege today of spending the morning listening to Jennifer Ballentine’s thoughtful and informative presentation on the new law and what it means in practice and policy for healthcare providers and facilities. Many of the folks there were from the hospice and palliative care community, several different residences (skilled nursing facilities, assisted living facilities and continuing care retirement communities) were represented and of note were the attendance of several first responders (EMS or firefighters). Perhaps in a subsequent post I will delve into the dilemmas of EMS providers who may be unaware of a person’s use of life-ending medication under the new law (as they are sometimes unaware of do not resuscitate orders). Many different people in attendance with lots of challenging questions. But only some of those questions could be answered by reference to the new Colorado law.

The situation with the new law was an abrupt sea change. The day before this new law was certified by the governor all of these folks from their diverse communities were continuing to discourage very ill people from thinking and possibly acting upon suicidal thoughts and wanting to end it all. Once the law was certified, then BAM – all that changed. No easing into any transitional period as California and Vermont enjoyed (with their “end of life option act” and “patient choice at end of life” statutes respectively) . . .

I will try to steer clear of the pseudonymous quicksand of what these types of medical services provided are called: physician assisted suicide, physician assisted death, (medical) aid in dying, (voluntary active) euthanasia, death with dignity, but it is challenging when there is no clear marker of when living is perhaps coming to a close and dying is well-nigh. I liked one blogger’s beef with all these euphemisms and her suggestions that we perhaps call it “assisted self-administered lethal ingestion.” I think this descriptor is best because it is so technical sounding and our new law champions a medical technique, with precious few indicia or garb of a “right” to die.

To wind up, I will turn to a quote from the late poet, novelist and social critic James Baldwin:

Perhaps the whole root of our trouble, the human trouble, is that we will sacrifice all the beauty of our lives, will imprison ourselves in totems, taboos, crosses, blood sacrifices, steeples, mosques, races, armies, flags, nations, in order to deny the fact of death, which is the only fact we have.

James Baldwin, The Fire Next Time

How to identify the boundaries of death versus suicide – where are the distinctions here among all the different labels? Our new law does explain that the actions in accordance with the procedure set forth in the End of Life Options Act do not constitute suicide, assisted suicide, mercy killing, homicide or elder abuse. Does this move our conversation forward? Can a law do this?

A Brief History of Death

Date January 12, 2017

Posted by Barb Cashman

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Living and Dying at the Same Time

Can you discern in this picture what is alive and what is dead?

Death, the inevitable. Death, the rejected. Do we feel sorry for death? No! Of course not. Is it separate from our lives or merely a natural part of them? What parts of our lives are we more comfortable with or at ease with and how do these factor into our relationship with death?

Whoa Barb . . . relationship with death, relationship to death. What is it that holds us to our life and, inevitably, leads us to our death? What is the meaning of this relationship? Well, I can only think that this kind of question is what poetry was meant for. . . so I turn to the Trinidadian poet Derek Walcott’s poem Love After Love:

The time will come when, with elation,

you will greet yourself arriving

at your own door, in your own mirror,

and each will smile at the other’s welcome,

and say, sit here. Eat.

You will love again the stranger who was your self.

Give wine. Give bread. Give back your heart

to itself, to the stranger who has loved you

all your life, whom you ignored

for another, who knows you by heart.

Take down the love letters from the bookshelf,

the photographs, the desperate notes,

peel your own image from the mirror.

Sit. Feast on your life.

Here is the poem read aloud (by Jon Kabat-Zinn)

When I started to put together this post, I thought I’d try a google search of my title, which tends to bring up something fascinating. Sure enough, there was another reminder about my lapsed New Yorker subscription . . . a post dated 11/6/16 by Nir Baram. The New Yorker has such insidious ways of luring subscribers back again and again! But I will remain undeterred.

So what might I say for this kind of post – brief, about something as impersonal and ultimately personal as death? I might describe the denouncing, distancing, the walking or running away from, that so many of us steadily manage over the years of our lives. But what happens when we realize that the distancing has only been in the shape of a giant and fascinatingly graceful circle, or perhaps a woven pattern or a circuitous route ala Jackson Pollock? Can we even recognize it as our own, part of our heritage as mortal beings?

How is it (I asked my engineer friend this last night) that we can gauge or measure someone or some thing’s age? Its beginning and its end? I certainly see the need for practical purposes to come up with such boundaries. But we tend to observe them without any questions at all. And the location of that separation as well as its origins, well that’s another matter. We might arrive at a place where or a time when we might question those boundaries. Whose death is it? Who dies? Stephen Levine’s book explores this well.

My post today is perhaps a window dressing of sorts for some writing I will be doing about the Colorado End of Life Options Act. I will be interrogating some of the ideas, beliefs, thoughts, expectations and so forth about dying and death (particularly euthanasia) in some future posts. I’ll close with a quote from a favorite poet, E.E. Cummings:

Unbeing dead isn’t being alive.

Dementia and Its Disproportionate Impact on Women

Date January 5, 2017

Posted by Barb Cashman

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Italian Doors

I read with interest Heather Snyder, Ph.D.’s blog post from December 28, 2016, titled “Alzheimer’s Falls More Heavily on Women Than on Men.” She is Senior Director of Medical and Scientific Operations at the Alzheimer’s Association and suggests that effective approaches to preventing, diagnosing and treating Alzheimer’s and other forms of dementia (I collectively refer to these as AD for convenience) will likely be tailored to a variety of factors which include genetics, hormones and lifestyle – which involve gender.

The National Institute on Aging observes that Alzheimer’s disease is currently ranked as the sixth leading cause of death in the United States, but recent estimates indicate that the disorder may rank third, just behind heart disease and cancer, as a cause of death for older people.

Awareness of this important detail is lagging! According to an Alzheimer’s Association blog post, women in their 60s are about twice as likely to develop AD than are breast cancer. That 1 in 6 chance for a woman to develop AD at 65 compares with a 1 in 11 chance for men. A recent study shows that a person with a particular gene variant, ApoE4, which both men and women may carry, poses a markedly higher risk of the disease to women than men.

Observation, as anecdotal evidence, might suggest that because women tend to live a few years longer than men, they are more likely to have dementia, but this doesn’t hold water. Dementia, and AD in particular, is a disease that tends to last a number of years and the majority of person affected by the disease are older, er. . . old – meaning 60 “or better.” The number of people affected by early-onset AD is less than 5% of all persons affected and most of those persons have the familial AD. But what causes AD in the remainder of the persons with early-onset AD and the vast majority of older persons diagnosed by the disease remains unknown.

You might have heard the news in late November about a highly touted AD drug, which had looked promising in clinical trials, showed little promise to significantly slow the decline of dementia caused by the buildup of amyloid plaques as indicative AD. The latest difficulties will certainly move this field forward and trials of another amyloid-targeting medication are due later this year.

Here is a video about a Swedish photographer’s project, Into Oblivion, which shows poignant pictures of French residents (mostly women) living with AD behind locked doors. Yes, there is French spoken in the video, but the pictures speak for themselves. In our country of course, most of us don’t refer to this living arrangement as a “protective unit” or “lockdown,” we choose instead to refer to it as “memory care,” as if living in a secure unit implied care for a failing memory! It raises the ethical issue about whether confinement is care.

I’ll be writing more on those ethical discussions surrounding care of persons with AD.

Solstice and Death Denial

Date December 21, 2016

Posted by Barb Cashman

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Night Lights

Solstice is an astronomical event, a phenomenon occurring biannually which marks two extremes: the shortest day of the year (today) and the longest day of the year. Its meaning derives from the Latin: sol for sun of course and stice meaning standing still in that the sun stops before it reverses its direction. All cultures in the world have noted or somehow marked the occurrence of the solstice, but each has historically come away with different forms of its observance.

I’m writing about solstice today for a couple reasons I suppose. One is its reminder of constant change in our natural world. There is always some movement in this life – a lengthening and a shortening, a moving toward and a moving away from, but it often seems that many of us would rather insist on holding onto something a bit more concrete, that we can touch, hold or identify as familiar. Most of us do not welcome change with open arms because it represent the unknown, about which we can never be too certain.

In the coming months I will be writing more about a favorite theme of mine – the denial of death. This denial of death which we endorse and glorify in our culture, often unwittingly, is essentially a denial of life. We can’t have one without the other. So how do we manage this uncertainty which often presents as anxiety – either on a personal or collective level? Many of us will simply choose to react, to prepare for what we think is inevitable in our minds – as if we can predict the future. Of course many of us can predict the future in that the narrowness of our ability to see the world in front of us is such that our field of vision is limited to only those things which we want to see.

This closing up, this denial of what we don’t want to accept, what we are not willing to see and what we have told ourselves we would never accept is in many ways like a solstice. Our world shrinks down to what is manageable under the circumstances, the mystery and uncertainty of what we can’t control is simply too much for many of us. But what if the unknown, the uncertainty is our best teacher? How might we respond to it? I think of a favorite quote of David Steindl-Rast:

The root of joy is gratefulness…It is not joy that makes us grateful;

it is gratitude that makes us joyful.

You can watch Brother David’s Ted Talk here.

I have written about gratitude and gratefulness a number of times. In our culture, we tend to be focused almost exclusively on the personal losses faced in elderhood: the loss of autonomy as a result of physical, mental or emotional difficulties or challenges; the loss of purpose in that many of us no longer feel we are contributing members of a community; and the loss of engagement in life. I believe that successful elderhood is possible and desirable, amidst all the difficulties, pessimism and “conventional wisdom” (or insanity, depending on your point of view) – perhaps even as a result of all these challenges. This is what I will be writing more about in 2017. I am grateful for this opportunity to write about this, for each of you that reads a post of mine and particularly to those who comment or send me an email about a post. Happy solstice day today and may your days be lengthened in joy and deepened in purpose.

End of Life Options and Deathbed Ethics part 2

Date October 14, 2016

Posted by Barb Cashman

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Italian Sculpture

In last week’s post about Colorado’s Prop 106 – End of Life Options, I looked at the version of “death with dignity” as another theater for denying death. Someone I spoke with a couple nights ago was puzzled when I made this comment as she thought that choosing one’s own demise couldn’t be, by definition, death denying. Well yes, there is a difficulty with the terminology here as well as the language! But I am talking about the big picture here.

How do we define “deathbed” when it is someone who actively wants to die, as opposed to someone who may or is likely to die relatively soon, most likely as the result of a terminal disease? Are the deathbed and our deathbed ethics defined by the person who will die or do we use some other standard to determine this?

End of Life Options and Its Stated Goal of Allowing an End to Intractable Pain

Oregon has had a physician assisted death statute the longest of any state, since 1997. The 2015 Oregon statistics are quite telling here. I think most people conclude that what we are talking about here is the ending of a terminally ill person’s intractable pain. But wait a second, that reason is pretty low on the scale of what people in Oregon mentioned in 2015 to justify their choice of physician assisted death. The top three reasons were: “less able to engage in activities making life enjoyable” (96%); “losing autonomy” (92%); and “loss of dignity” (75%). Does this surprise anyone? “inadequate pain control” was mentioned by 28.7% of people. We are not talking about physical pain here, contrary to what most folks seem to believe. People getting the lethal medications are saying that it is the pain of losing the life they once knew, as an autonomous individual. This is one of the reasons why the Not Dead Yet disability community and many others get excited about this important detail – because it is inherently a quality of life issue.

Besides, there is a problem here with this “physical pain” rationale . . . Why, if the question is intractable physical pain as touchstone, would we limit the relief allowed only to those suffering from a terminal illness. Why exclude from physician assisted death those who face chronic, intractable and debilitating pain but are not terminally ill? Dax Cowart’s story about his right to refuse treatment in this context is instructive. Cowart wanted, demanded to die on many occasions, but wasn’t allowed to do so.

The Relation Between the Exercise of the right to Die and the Risk of Coercion

Note that it is not possible for us to exercise our rights in a vacuum.

In the context of this asserted right, as identified at least within the parameters of Prop 106, how do we account for the basic human dignity inherent in our lives – in whichever level of capacity or incapacity, meaningfulness or meaningless we find ourselves? I don’t think the asserted right addresses this at all. I think here the asserted “right” is simply an uneasiness with our “diseasiness.” Quality of life and human dignity – how do we calculate or assign value to our existence? If we focus on what we don’t have any longer (as many elders tend to do) – a level of autonomy previously enjoyed that is no longer, a loss of control over bodily functions, and a dependence on others for basic needs – then we assign a limited and diminished value to a particular type of our existence.

I have spoken with more than a few elders who have explicitly stated that they do not want to outlive their money or have mentioned other ways in which they do not want to be a burden on their children or others. If the elder is old and frail, maybe appearing to be going downhill after a fall, what would there be to stop or slow a family member’s subtle coercion to simply give up?

Well, it turns out I could write many more posts on this topic because it really is about the quality of our humanity, not the right to die with a doctor’s assistance. So, you’re wondering . . . what is the alternative? In my first post I mentioned how Medicare, only since January of 2016, has been paying its doctors to have an end of life conversation with patients. There are other important changes to medical care for elders as well as others with serious or chronic illness. I am thinking of palliative care and hospice care – different types of medical care but with the common value and goal of treating the whole person, not just the medical problem which the patient presents. Hospice care has, in addition to its provision of medical care, a focus on spiritual care as well as counseling – often done with social workers with the patient as well as their family members.

We must remember that death is not simply a “right”, it is a normal part of life. Focusing on the quality of life is obviously challenging when there is terminal pain involved or a chronic illness that causes that pain. In the context of Prop 106, death is treated as a right, to be exercised in order to vanquish that viatlity- and quality of life-robbing illness that would cause death its own time.

I think we should give our palliative and hospice care specialists just a bit more time and open our minds to more life-affirming options that are truly compassionate medical care of the whole person. I liked what this article about palliative care from the NIH had to say:

A comprehensive psychosocial and spiritual assessment allows the team to lay a foundation for healthy patient and family adjustment, coping, and support. Skilled expert therapeutic communication through facilitated discussions is beneficial to maintaining and enhancing relationships, finding meaning in the dying process, and achieving a sense of control while confronting and preparing for death.

There are choices besides dying in a hospital, alone and in pain – or what Prop 106 offers. Let’s not give up hope for ourselves just yet. Let’s not make this failure of medicine’s ability to effectively treat our end of life conditions or intractable pain, a failure of our humanity!

End of Life Options and Deathbed Ethics – part 1 of 2

Date October 5, 2016

Posted by Barb Cashman

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At a former client’s request, I am writing a bit more about the ballot initiative Proposition 106 on the November ballot for Coloradoans. Read the text of the initiative here. It was formulated as Prop 106 after two unsuccessful attempts to get a version of the Oregon statute through the Colorado legislature. After the bill died in the spring of 2016, supporters made good on their threat to take it to the voters in a ballot initiative.

Why do I bring up “deathbed” ethics here? Because I think there is an important and a vital distinction between allowing for an easier death, a good death – which is the historical meaning of euthanasia, and the causing of death by hastening it with a life-ending prescription. In our post-modern America, we have become estranged from death and dying. Dying has come to be seen, as life has for so many elders, as the management of a medical problem. This is recently changing as more people are able to die at home and with the wider familiarization with hospice and palliative care. Most of us care about the quality of life and so, consequently, about the quality of a death or a dying process. Throughout history, we humans have always tried to control the way in which we die. But is dying an accomplishment or part of a life process? How do we master death? I am unsure of the answers to these two questions, but I can tell you that Prop 106 has one answer, to this question – that is to take one’s own life with life-ending medication, which proponents have historically termed “death with dignity.”

I find offensive the idea that the only “death with dignity” is by one’s own hand and within a time frame selected by the one choosing to end their life. I think this is no mastery of death at all, but represents an even deeper form of denial, an escalation if you will, of the denial of our own mortality. It’s as if we say to ourselves “I’ll show you death – I will choose you and not allow you to choose me!” This reminds me of a line from a favorite children’s book – Arnold Lobel’s Frog and Toad Together when the two friends (observing a hawk overhead) scream together “we are not afraid!”

We live in a death-denying culture and I see this Prop 106 as simply another means of denying death, but this step requires the endorsement of others on two levels: first, in the form of a change in the law to allow for assisted suicide or physician assisted death; and second, in the form of the fundamental change in the way doctors treat patients.

Americans love to discuss and debate the meaning of our rights and how our rights are best protected. We tend to focus on individual rights in particular and sometimes we tend to forget that for each right there must me some relationship for its exercise, some context for it to be meaningful and substantive. What if our focus on this asserted individual “right” is more akin to a coping mechanism (maybe a dissociative pattern?) in the face of suffering? In this sense, Prop 106 represents a solution to a different problem, a philosophical problem of human existence and not the one described in the initiative.

The Right to Die

The “right to die” is a misnomer for what this ballot initiative –– is about. Suicide is no longer a crime in any U.S. state. People already have a right to die as such (without another’s assistance) and people take their own lives every day. The right which the “end of Life Options” initiative concerns is the ability for a class of terminally ill persons to be able to get a prescription from their doctor (without criminal penalty being imposed on the medical provider) for life-ending drugs. Prop 106 refers to these as “medical aid-in-dying medication”, but I have difficulty calling them medication, because that would be for treatment, but this initiative includes the ending of a patient’s life as medical treatment. Is this a big deal? Yes, I think so! Colorado law currently provides that a person aiding another’s suicide is felony manslaughter (Colo. Rev. Stat. 18-3-104(B)).

This “right to die” which is Prop 106, is a right, the exercise of which, is premised upon the necessary involvement of another person (and institution) for its fulfillment. If you are interested in reading further about this, you can take a look at the U.S. Supreme Court’s 1997 decision in Washington v. Glucksberg, in which it determined that the asserted liberty interest (under the Due Process Clause) had no place in our legal, medical or other traditions and to decide otherwise, would force the Court to “reverse centuries of legal doctrine and practice, and strike down the considered policy choice of almost every state.”

The State’s Stamp of Approval on the Medical Profession’s Ability to Prescribe Death-Causing Medications to Patients without Criminal Penalty

Whether we call this active euthanasia which is described in Prop 106 as a “right to die,” or a self-inflicted “mercy killing,” Prop 106 would change the most personal act of whether to end’s one’s own life into a a matter of policy, by forcing endorsement of voters and the medical community to institute a fundamental and historical change in the doctor-patient relationship.

Some patients would say that their right to receive life-ending medication should trump this historical relationship, but I find it incredibly inconsistent that, only since January 2016, Medicare has begun paying its doctors to have an end of life conversation with patients. This was a big step and an important recognition from a system that has fully supported viewing people as medical problems and not as people! Additionally, CMS (the Centers for Medicare & Medicaid Services) recently issued has new regulations that enshrine “person centered care” for residents of long-term care facilities. I think this forcing of a doctor’s hand to assist our own in choosing to take our own life is simply impatience with the problem of living – and our difficulties discerning the difference between what we recognize as living and as dying are the problem. Prop 106 is not the solution to either of those challenges.

I will continue this discussion next week when I delve further into the stated goals of some proponents and what this law allow and its implications for frail elders. . . .

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