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

End of Life Options and Deathbed Ethics part 2

Italian Sculpture

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?

  1. 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.

  1. 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!

©Barbara Cashman 2016   www.DenverElderLaw.org

 

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

Springtime in Assisi

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.

  1. 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.

  1. 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. . . .

© 2016 Barbara Cashman  www.DenverElderLaw.org