Welcome to My Blog

I have a new logo, and I’m pleased to say that the day I purchased it and printed it out, I was able to ask a client what he thought about it, and he immediately recognized it as a tree and made the “tree of life” connection. Yes, that’s the tree I’m talking about! My logo is a tree that also looks like a person who is embracing a community. I think this is particularly relevant to what I do because I work to help my clients put together a holistic plan for their future – one that is consistent with the values a person has lived by and which honors the relationships with family and community members. Holistic planning can also involve peacemaking. The tree of life connection is especially meaningful to me because it symbolizes the transitory nature of our lives and the relationships, in the context of certain unchanging constants. The tree of life symbolizes a simple message of unity, that we are all part of a community and it is represented in a number of different cultures, myths, faiths and traditions across time and geography. It is an important symbol for my practice philosophy because I seek to assist my clients in identifying ways they can maximize the support and connections they need from others during their lives and so they can transmit their legacy after they are gone.

I mention the Tree of Life specifically on my blog page because my blog is the place where the diverse but related interests will converge. We have never before had so many 80 and 90 year-olds on the face of the earth. What are the implications for law, ethics, medicine, philosophy? These are all appropriate aspects of identifying a strategy for clients because a sound plan must take into account the “ripple effect” of individual actions that relate to financial, emotional, medical and physical considerations that are often relevant in the legal context.

 

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

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?

© 2017 Barbara Cashman  www.DenverElderLaw.org

 

A Brief History of Death

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.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

Dementia and Its Disproportionate Impact on Women

Denver Elder Law

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.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

Solstice and Death Denial

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.

© Barbara E. Cashman 2016   www.DenverElderLaw.org

Dementia and the Growing Prevalence of Elder Abuse

Not Winter Flowers

Not Winter Flowers

I was reading a list serve post yesterday that told of the member’s father (a retired attorney in another state) who got a call from a scammer claiming to be an attorney working on behalf of a grandchild in trouble with the law.  The post was essentially a “heads-up” kind of post to a new mutation on the old long lost grandchild scam.  You can read an article about how that scam works from the perspective of the scammer here.  Sadly, some other members of the list serve community reported a couple instances of this one when it worked successfully, relieving the loving grandparent of a sum of money.  One such scam was traced to a caller in the Ukraine!  If it sounds like it might never happen to an elder you know, think again – these folks are quite sophisticated.

This is an introduction to some news that I recently read about our neighbors in the UK: Dementia is the leading cause of death in England and Wales.  Read the BBC News article here.

This means that as other health challenges are effectively managed throughout one’s old age, dementia remains in the background so to speak, a silent killer.  It’s no surprise that the bulk of these dementia deaths were of women, as women tend to have a longer life span than men.  What I thought was particularly interesting was this figure: Dementia, including Alzheimer’s disease, accounted for 15.2% of all female deaths, up from 13.4% in 2014.  Is this due to more effective means of diagnosing Alzheimer’s (which ordinarily must be done with a brain autopsy or at least a slice of that organ’s tissue to identify those amyloid plaques)? Or is it due to an actual rise in the number of persons afflicted with the disease, as demonstrated in the graph in the article which shows it steadily overtaking heart disease since 2012?

Dementia is a leading side effect if you will – of our longevity.  This news doesn’t just impact our health and longevity of course, factors mightily in the need for further raising the awareness of elder abuse.  Folks with dementia are likely to be victims of some form of elder abuse, neglect or exploitation.   The burden on the rest of us to be able to detect elder abuse is crucial to our collective well-being.  The community plays a foremost role in the detection of elder abuse in its many forms and so community members – through meals on wheels volunteer, peers at a community center or members of a faith community, can play a major part in this effort.  I don’t want to minimize the importance of prevention, but I think our awareness needs to focus first on the detection of the myriad forms of elder abuse.

My introduction to this post was about a scam by someone posing as a person assisting a grandchild – but most of the reported cases do not involve “stranger danger” as it is called in the child welfare context.  Sadly, when the abuser or exploiter is an adult child or other family member (as the vast majority of such cases appear to be) the elder is faced with a difficult choice indeed because their ability to be maintained in their own home is severely compromised.  We have some battered women’s shelters, but no emergency housing for abused elders.   We simply must be able to move forward with the development of services for at risk elders and design some kind of basic architecture of supportive services.  Right now, everything is dependent on where an elder lives.   How many community resources there are largely depends on local and state funding because whether the detection resources, such as law enforcement and adult protection services, are adequately informed to detect elder abuse – makes a huge difference.

Here’s a link to a very informative program from Nashville Public Television.  Especially as we tout “aging in place” as the best kind of living arrangements for most elders, we must face what that can mean for them and the risks it can pose.  We must respond to this call for being present to our elder community members!  I will write more about what looks to most of us to be a challenging landscape of familial relations and unfamiliar ethical territory.

© Barbara E. Cashman 2016   www.DenverElderLaw.org

Elder Abuse and the Mother-Child Relationship

Tree Mother

Tree Mother

 

Today I’m exploring the question of whether exploitation or neglect of an elder parent by an adult child presents differently due to the gender of the parent.  I will begin with a question:  is the elder parent – adult child relationship different between mothers and fathers?  What about when it “goes wrong” and results in neglect, exploitation or financial, physical or verbal/emotional abuse? I can say from my experience as an elder law attorney that elder mothers appear to be taken advantage of in ways that are often different from those means involving elder fathers.

This post crosses a lot of territory – spanning the abuse of a power of attorney by an adult child serving as agent, elder abuse resulting from neglect of an incapacitated elder, to the evolution of family conflict across many years of relationships.  Abuse in these contexts can take many varied forms and because it is part of a family relationship, a most intimate one of mother and child – it can express itself in subtle and slippery ways.

I have noticed in the estate planning portion of my work that fathers tend to have a much easier time with leaving disproportionate shares of an estate among adult children and also seem to be much more resolute about disinheriting a child.  One of the reasons might be that mothers tend to have a higher involvement and investment in the parent-child relationship, even as it evolves over the lifetime of the parent and the adult child(ren).  In my experience, mothers are more likely to hold out hope that a wayward child (whom a father might easily disinherit) will return to a more productive life path or that the filial relationship will otherwise be redeemed.

Some people might think that threatening one’s mother with putting her in a nursing home might amount to elder abuse.  I’m not saying that it wouldn’t constitute emotional abuse in some circumstances, which could be used by an adult child to further a strategy of dominating and controlling a parent for their own personal gain.  This threat could also stem from an adult child caregiver who is overstressed from his or her responsibilities to care for a (sometimes uncooperative or difficult) parent.  Sometimes what ends up as exploitation starts out as a willingness to assist the parent but perhaps due to the nature of the parent-child relationship or as a result of the buildup of resentment on the part of the child, the caregiving goes astray.  But what I’m talking about in this post goes a bit further.

As we all know, parents remain parents of children, with all of the emotional responsibility that entails – regardless of the age of the child.  The fact is that many elders are better off financially (or at least more secure) than their children and they may want to help their children financially, but there is a razor-thin edge between healthy nurturing and being subjected to emotional manipulation.  Here’s a link to an AARP article from 2013 which has some sad statistics.  Part of the problem is a sense of entitlement from the adult child or children.  Some of us in my field of practice use the term “impatient heir” to describe these adult children who seem to be biding their time until the parent dies and they can “collect.”

I don’t want to sound like a broken record here, but I have noted a number of times in previous posts that there is not very much current research documenting the prevalence of elder abuse.  There is some recent work on the sometimes toxic nature of filial relationships and elder abuse.  What is “taking care of” someone and what does it properly entail? Here’s a link to an abstract about the special significance of the adult daughter-elder mother relationship and the use of aggression. Underreporting is an obvious problem – particularly when the reason for underreporting is shame or embarrassment.  When an elder mother (or father) reaches out to me as a resource person to assist in remedying a situation, one of the first things I say involves the recognition of how brave the mother Is to contact someone outside the family to report on what is generally a highly embarrassing and sometimes shameful situation.  One elder mother I worked with recounted to me how her daughter told her that she was mean to her when she was a teenager and so the daughter’s control over her mother’s finances was part of a “payback.”  Another mother extended her home temporarily to a child from whom she had been estranged for many years, only to learn he had no intention of ever leaving.  The victim-victimizer narrative in these situations can get rather convoluted!

Dr. Judith Smith is a researcher in this field who is engaged in studying how family conflict plays out in the later years of the parent and she has focused on the parent’s feelings of ambivalence (e.g., a mother wanting to help her child versus the resentment of feeling the need to assist).  The National Adult Protective Services Association (NAPSA) recently added Dr. Smith’s research brief entitled “Elder Abuse, Mother Abuse and Parenting in later Life.  Here is a link to the power point training offered by Judith Smith, LCSW, PhD on Vimeo on which NAPSA based their report.

The ambivalence scale to which Dr. Smith’s training refers is described in more detail here by Karl Pillemer, in the article entitled “Ambivalence Toward Adult Children: Differences Between Mothers and Fathers,” and you can read the article on the National Institutes of Health website here.

As we continue down the road of longevity, it might help us to think about our long term familial relationships and how they are challenged or compromised as a result of a parent’s longevity.  When this longevity involves physical frailty, emotional dependence, cognitive impairment or other factors diminishing an elder parent’s autonomy – what is an appropriate response?  This is of course an ongoing conversation and I will continue on this topic in the future.

© 2016 Barbara Cashman  www.DenverElderLaw.org

November is National Family Caregivers’ Month

Clouds in Water

Clouds in Water

In the post, I will look at some of the challenges of caregiving for a loved one with dementia and provide some resources for this growing population.  November is also National Alzheimer’s Disease Awareness Month.  Here’s a link to the Alzheimer’s Association’s caregiver center, which has helpful information and resources.

As we approach the holiday season, it struck me that it would be a good time to revisit this topic.  The holiday season and its focus on family activities and get-togethers, can cause additional strain to family relationships made stressful due to an elder parent or loved one’s dementia.

The first important detail is that people with dementia are usually cared for by family members or friends and the most of them (about 80%) are receiving care in their homes.  Here are some numbers from the Centers for Disease Control:

Each year, 15 million Americans provide more than 17 billion hours of unpaid care for family and friends with Alzheimer’s disease and related dementias. More than six in ten (62%) caregivers were women, almost one in four (23%) were 65 years of age and older, and three in ten (30%) had children under 18 years old living with them.

Caregivers of those persons with dementia usually provide such care for a longer period than the caregivers for other diseases or conditions, and the CDC statistics on this demonstrate that

More than four in ten (43%) caregivers of people with Alzheimer’s and related dementias provide care for one to four years, and more than three in ten (32%) are caregivers for five years or more. For other types of chronic conditions that require care, more than three in ten (33%) caregivers provide care for one to four years, and almost three in ten (28%) are caregivers for five years or more.  

Caregiver stress, caregiver burnout, and for premature death for an elder spouse of a person a suffering from dementia are all very real risks here.  The demands of caregiving for a loved one with dementia subject the caregiver to greater risks of anxiety, depression and overall poorer quality of life.  So, that is the bad news. . . so what kind of resources are available to support these caregivers?

There are a range of options to consider of course, as every person or family’s situation is unique.  Perhaps all that is really need is a bit of respite care.  Sometimes just the prospect of respite care being available can make a huge difference in the emotional health of a family caregiver.  Here is a link to the Colorado Respite Coalition, which has a variety of resources available.

The vast majority of caregiving in this country is done by family members free of charge.  For many people however, volunteering these services is simply not a financial option.  Here’s a link www.disability.gov, the federal government’s website that has links, resources and helpful information for family caregivers as well as information about how family caregivers can get paid to perform such services.    And here is a link to the eldercare locator, a public service of the U.S. administration of Aging.  The Medicare.gov site also has some information that can be helpful to caregivers about what Medicare provides.  The AARP site lists these five skills that help persons care for the elders they love: observation (paying attention to changes); organization; communication; questioning and tenacity.

Several of the helpful sites above advise elders to put important legal documents in place while the elder retains capacity to do so.  When will you know whether a power of attorney is needed? Chances are good that it will be too late for an elder with dementia to execute a power of attorney once it is determined that such a document is needed!  So, I will close this post with a reminder concerning a couple bare minimum documents which are required to ease the burden of family caregiving: a health care power of attorney (with a conversation about end of life wishes with the named agent, successor agent and perhaps other family members) and a general durable (financial) power of attorney.

Both of these documents are planning documents that are designed to prevent the need for later protective proceedings in probate court  – for guardianship and/or conservatorship – in the event of an elder’s inability to manage their money or if they become incapacitated due to advancing dementia.  The American Bar Association’s “tool kit” for advance health care planning has good questions to consider in how to select your agent and list your priorities.  Remember, one of the best ways for elders to NOT be a burden on their loved ones is to plan ahead and the value of that advance legal and medical planning should not be minimized.

© Barbara E. Cashman 2016   www.DenverElderLaw.org

 

Dementia and the Right to Vote

The Angels of Voting?

The Angels of Voting?

As our national election day nears, I thought it would be worthwhile to revisit the topic of voting rights and elders with dementia.  What kind of folks am I describing with such a broad sweep? Here I’m talking about the people with advanced dementia, some of whom reside in nursing homes or other institutionalized settings who have a court-appointed guardian acting for them as well as those elders who are living in the community and may have a diagnosis of dementia or simply suffer from cognitive deficits or decline.

So – you’re wondering whether I will reveal that folks suffering from advanced dementia who reside in say, a Colorado “memory care” facility, still retain the right to vote? Why yes, that is one of my points!  Voting law is a combination of federal and state laws.  As you may recall from studying American history, some states in the late 19th century passed “Jim Crow” laws that (among other things) imposed a poll tax, literacy test or other legal hurdle to black voters residing in those states.  It took a long time to remedy the situation, but the Voting Rights Act was signed into law by President Johnson in 1965.  Why do I mention this important legislation of the civil rights movement? Because it, along with federal case law, help inform the backdrop for the federal law of the right to vote.  But while the Voting Rights Act and federal law prohibit states from denying any citizen the right to vote on the grounds of race or gender, the Act specifically allows states to enact laws to deny the right to vote to people for two reasons: criminal conviction or mental incapacity [See 42 U.S.C. § 1973gg-6(a)(3)(B)].

It is important to note that the right to vote has been an area of struggle for many people in the disabled community.  Elder law’s capacity and incapacity analysis and some of its underlying policy often make reference to law concerning the disabled.  Voting rights of elders with dementia is one of those areas of intersection with disability law.

For resident citizens who are disabled, incapacitated (those persons for whom a court has appointed a guardian) or persons with dementia, Colorado is one of a relatively small number of states (eight) which has neither mention of mental incapacity (some terms used in other states include idiocy, insanity, non compos mentis, etc.) in our Constitution as a bar to voting nor any state statutory law prohibiting the (mentally) incapacitated from exercising their right to vote.  You can read more about assessing the capacity to vote here.

Keep in mind that there is a Colorado statute which relates to individuals confined to a mental health institution.  That statute specifies that individuals confined in a mental illness institution “shall not lose the right to vote because of the confinement.” C.R.S. 1-2-103. So, as long as that person is otherwise qualified to vote, they will be given a ballot. Additionally, Colorado law requires mental health institutions to help assist their confined residents to register to vote and obtain mail ballots.

The difficulties for elders with dementia who are Colorado voters will boil down to more practical matters concerning, for example, how to get assistance to complete a mail-in ballot.  That is a more challenging proposition as the federal law Help America Vote Act of 2002 (Pub.L. 107–252)  and Colorado laws require that voters with disabilities be able to cast their vote privately and without assistance. Each Colorado county has purchased accessible voting machines to be used in every polling place which are designed to provide the opportunity for voters with a wide range of disabilities to vote privately and independently.  These laws and other applicable law designed to prevent improper influence on voting may effectively render an incapacitated person’s right to vote meaningless because the person will not be able to exercise the right.

Perhaps this will be a new frontier of elder law: requiring cognitively accessible ballots and other election procedures.  Making these a priority could potentially provide a tangible benefit for many other voters.

© Barbara E. Cashman 2016   www.DenverElderLaw.org

 

Longevity, Dementia and Ventilator Use

Ketring Lake at Dusk

Ketring Lake at Dusk

Longevity and dementia often go together – dementia or episodes of incapacity can be seen in some respects as the side effects of longevity.  A longer life expectancy doesn’t usually mean that it will be the quality of life that a person enjoyed – mobility, autonomy, social engagement, in the early years of retirement age.

In my practice I sometimes meet with a client who is suffering some cognitive decline.  Sometimes the type of brain disease or form of dementia can be narrowed down and other times this is more difficult.  What is vitally important for these persons is to make sure that they have advance medical directives- in the form of a health care power of attorney as well as a living will.

I should warn you that some of this post is based on a cautionary tale.  This evidenced by a recent Reuters article documenting a surge in ventilator use for nursing home residents with dementia.  The study which is the subject of the article documents the number of nursing home residents with advanced dementia – mostly women – who needed to be hospitalized and were placed on mechanical ventilators.  The use of ventilators for such hospital patients, however, did not lead to a better survival rate.  The article is instructive in noting that this is a recent and troubling development:

In 2013, among every 1,000 nursing home residents with dementia who needed to be hospitalized for some reason, 78 were hooked up to mechanical ventilators, compared to just 39 out of 1,000 in 2000, the study found.  Despite this surge, the mortality rate for these patients with mechanical ventilation remained constant at more than 80 percent.

Why is this happening? The study makes several suggestions, but a common sense answer to an important part of the question of how these patients are “ending up” with a hospital stay that includes being hooked up to a ventilator is somewhat obvious to me: these folks have not executed any health care powers of attorney or a living will.  But sadly, what might otherwise be life-prolonging intervention for many patients does not have the same effect for these elder women with advanced dementia.

One explanation of what happens when a patient has not executed a medical POA or a living will has to do with what types of services are available to these patients in the hospital setting.  The article quoted Dr. Gary Winzelberg as observing that “as long as it’s easier to access an intensive care unit bed [in a hospital] than comprehensive hospice and palliative care services in nursing homes, the trend of increasing use of mechanical ventilation for these individuals is likely to continue.”

Our health care system is not exactly “dementia friendly” when it comes to how it copes with the diminished capacity of a patient with advanced dementia who is unable to give informed consent and otherwise meaningfully participate in their health care decisions.  This is one of the reasons it is vitally important for all adults to have “the conversation” with a loved one they trust.   That conversation should ideally lead to the execution of advance medical directives – the kinds of documents that allow a person’s wishes to be upheld.

What seems theoretical and remote to so many people – is vitally important in the event the person with advanced dementia (or some other cognitively incapacitating disease or condition) wants to maintain some self-determination and the person’s family members wish to support the person’s decision to decline medical interventions like artificial nutrition and hydration and intubation (with a respirator) will become much more commonplace in the coming years as the number of people with dementia continues to grow.

So . . .  how do we “work around” these difficult challenges?

– documents relating to decision-making guidance where a person is suffering from either a terminal condition or persistent vegetative state such that they are unable to made or communicate their own decisions.

The bottom line is we must be prepared and willing to help each other through this kind of difficult time in one’s life.  The best way to do that is with just a bit of preparation in the form of a conversation and documented in a health care POA and a living will.  Now is a great time to have the conversation and remember – it should be revisited at least annually!

© 2016 Barbara Cashman  www.DenverElderLaw.org

 

Deathbed Ethics, Proposition 106 and Remembering How to Die

Closed Shutters

Closed Shutters

We have forgotten how to die.  We have forgotten that it is death, as part of our life, which makes us human.  Death is just like the rest of our life – unpredictable and subject to constant change. That is what we have forgotten.  We have become obsessed with our identity and being “in control,” in such ways that support our limited notions of autonomy.  This is superficial, to say the least and I don’t think it has anything to do with preserving anyone’s human dignity.

In Proposition 106, physician assisted death (PAD) or physician assisted suicide is put forward as a “right” to be asserted by a limited and defined class of individuals suffering from a terminal illness who are not expected to live for more than six months.  But wait, this sounds like qualifications for a hospice script – doesn’t it?  Have people who are advancing the recognition of this “right to die” fully explored the parameters of hospice and palliative care?  I think many have not.  It is much simpler, much more straightforward and slogan-empowering to clamor for a right than it is to take a “wait and see” approach – which is what most of us end up doing anyway. Why do I bring up palliative and hospice care in this context? Because I think the need to advance any “right to die” here is superfluous to the already existing but not well-known by the public services of hospice and palliative care health professionals.

In my previous posts, I mentioned the 1997 U.S. Supreme Court decision of Washington v. Glucksberg, 502 U.S. 702, 737 (1997) and I want to follow up just a bit on that decision and its wake.  I’m thinking particularly of Justice O’Connor’s concurrence, referring to pain management palliative and hospice care:

In sum, there is no need to address the question whether suffering patients have a constitutionally cognizable interest in obtaining relief from the suffering that they may experience in the last days of their lives. There is no dispute that dying patients in Washington and New York can obtain palliative care, even when doing so would hasten their deaths. The difficulty in defining terminal illness and the risk that a dying patient’s request for assistance in ending his or her life might not be truly voluntary justifies the prohibitions on assisted suicide we uphold here.

The “right to die” in terms of PAD would appear to be promoted at the expense of the prospect of any effective management of pain.  The further juxtaposition can be seen in these two articles by leading legal scholars: Robert Burt’s “The Supreme Court Speaks – Not Assisted Suicide but a Constitutional Right to Palliative Care,” in 337 New England Journal of Medicine 1234 (1997) and Erwin Chemerinsky’s “Washington v. Glucksberg Was Tragically Wrong,” in 106 Michigan Law Review 1501 (2008).

So why do I write another post about Prop 106? Because the “right to die” as it concerns a patient’s right to end their pain . . . is simply too misleading.  Terminal pain management, about which most people want to believe this proposed legislation concerns itself – is another matter separate from “the right to die.”  This is borne out by the Oregon statistics from 2015 which I referred to in my previous post.

Let’s set the record straight here.  The information collected from Oregon about those persons choosing to fill the prescription for the life ending medications did so based on their diminished enjoyment of life, their loss of autonomy, and their perceived loss of dignity. A surprisingly small number of people mentioned “inadequate pain control” as a reason to choose assisted death from a physician.  Why might this be that pain control factored in so small a number of responses? We don’t know because the statistics available don’t offer further information.  But I think it is not a stretch to conclude that most of those folks choosing to get a scrip filled for lethal medications already had their pain pretty well managed, thanks to hospice or palliative care.

The real reasons for these folks to get the medications was to manage the psychic pain of living at the end of their life, in which their terminal illness compromised their ability to live independently, autonomously and with the dignity with which they had previously known.  This is a qualitatively different kind of pain! This pain may be incidental to the “pain of dying” but it is most certainly a pain of living, living with the uncertainty of what challenges tomorrow will bring.  We have simply forgotten this important detail!

What kind of patient autonomy do we want to protect as a matter of law and public policy? I think we need to be clear about what this law would change and how it would work, and not to be dazzled by the shine of a new “right” that has little to do with the context – medical, legal, ethical or psychological – of how such a right would be exercised.  If this Prop 106 is really about saying it is okay to take one’s own life (I don’t even like saying “commit suicide” because it is fraught with moral implications that further perpetuate the underlying loss of the person’s survivors), then let’s be clear about that.  I believe that is the implicit underlying message, but few people are comfortable with looking much under the surface of the legislation and its long-term unintended implications.

We are talking about the pain of living a life without the independence and autonomy to which we had grown accustomed and the terminal disease or condition robs the patient of that dignity of autonomy.  I will be the first to state I am not equipped to decide for another when their terminal pain has reached such a level that palliative or hospice medications will not suffice to manage the pain.  But I think the pain we are talking about is not the physical pain, which palliative and hospice care providers have become experts in managing, no we are talking about the pain of living a life, the end of which is one “we have not chosen.”  It is implicitly stating – I do not want that challenge and I choose death instead.  Let’s be honest about that choice and our ability to choose it!

In some important respects, Prop 106 presents essentially a right to die versus a right to hope.  If we are in the midst of a terminal illness, rapidly advancing in its ravages of our bodies and our abilities to function independently, we are much less likely to give up hope if we feel supported, if we are not made to feel as if we are a burden on others.  Here physician assisted death resembles the choices underlying suicide as they vary in number among different cultures across that world.  Suicide has been characterized by Durkheim as related to sociocultural factors and in particular the integration of a person in family, economic, political and religious life.   I posit that we ought to be looking to each other for assistance, for hope, especially in the face of imminent death, and not be so eager to show the door to those of us who feel they have become a burden or simply want to “choose death.”

© Barbara E. Cashman 2016   www.DenverElderLaw.org