Will you need a dementia specific advance directive?

Reflection on a Lake

Are you one of the few and one of the brave who is willing to talk openly about dementia – specifically what kind of care you want and how you want your health care agent to decide for you in the event you have dementia?  Based on stats from the summer of 2017, fewer than one-third of Americans have executed a living will.

So, if you are one of those persons, this series of posts is for you!

By midlife, many of us have had some personal experience with a family member or loved one with dementia.  The disease Americans are most afraid of is the dreaded Alzheimer’s Disease (AD for short) or some other form of dementia.  For some of us, it overshadows even the fear of death.  Perhaps this is because that dis-integration of the brain causes us to forget the most basic of things – who we love, what we like to do, what is our identity, and even how to die. 

In our brain-centric culture, which so often takes a reductionist view of the body as a kind of machine (e.g., the heart is only “a pump”), to lost one’s mind is the most fearsome of possibilities.

 How will you know whether you might need a dementia advance directive? [Yes, it’s a trick question….]

Over the years I have worked with a couple clients who have been diagnosed with early stage AD.  These are typically the folks who are recruited to participate in studies involving the progress of the disease and new therapies.  Informed consent for voluntary participation in these studies can be challenging. Here’s a link to an informative background paper from the 2017 Research Summit on Dementia Care, through HHS.

What are our choices?

Do nothing and hope for the best. 

This is what most of us will choose by default.  “My kids will know what I want,” I’ve heard said with a shoulder shrug.  Really? How much more difficulty do we want to add to an already challenging situation?

Can’t I just rely on people I’ve already put in charge who know me to make the right decisions for me?

Yes, of course, as long as you have the documentation in place.  Most importantly a health care power of attorney, which names a person (an agent) to make decisions for you in the event you cannot give informed consent for medical treatment.  The health care provider is the person who decides whether a person can give informed consent.

You must rely on others, because dementia is a scenario which will leave many of us very vulnerable and unable to manage things on our own.  There, I’ve said it.  Is that really a fate “worse than death?”  There is an inherent dignity of human beings, regardless of our “cognitive status” or whether we have trouble thinking or remembering.

What do I need to consider to put in this dementia directive?

This is some heavy lifting…. Let me start with a bigger picture.  I enjoyed reading a recent New Yorker article by the late neurologist and writer Oliver Sacks which recounted the activities of two different patients with dementia.  One was a doctor who had been the medical director of a hospital where Sacks had worked.  Despite his mid-stage dementia, the doctor had periods of relative clarity where he believed he was a doctor at the hospital and would write prescriptions.  This was intermittent, however and some of the time the doctor was painfully aware of his predicament and his mounting losses. The article poses the basic question about how to treat someone with AD, do we honor the persons dignity and support them, to the extent feasible and appropriate, in the belief that they can still perform the job that served as the cornerstone of their identity?

This can be a tricky conversation, but of think of a relative who died in a facility from AD.  After she lost most of her ability to speak and communicate with others, she retained a decent command of her fine motor skills.  She had been an expert seamstress and embroiderer and my cousin reported how happy and occupied she was when she was given a knotted up necklace chain to untangle.

Okay, back to the response to the third question.  There is a big difference in a dementia directive between expression of a “freedom to”  in terms of what a person wants provided for them in the type of dementia care, and the right to express preferences which are a “freedom from” a statement of what is not wanted in advance of a time when we may no longer be able to object to such interventions planned or carried out “for our own good.”  How much can we describe and determine in advance and what will actually “stick” in terms of the two competing positive and negative statements?  Well, that’s a topic for my next post!

© Barbara E. Cashman and www.DenverElderLaw.org  2019. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Barbara E. Cashman and www.DenverElderLaw.org  with appropriate and specific direction to the original content.

Capacity, Incapacity and Vulnerability

Old boats on the Isle of Mull

This is the last post (for now at least) on the topic of capacity and incapacity. In my field of practice, I must be comfortable with making assessments of capacity concerning potential clients and I must also be familiar with the panoply of assessment tools used by the medical establishment (and psychologists who perform neuropsychological evaluations of capacity).

Capacity and incapacity are legal constructs, but they often arise within a medical context and are typically established (in the Colorado probate code as a requirement for a physician’s letter to support a petition for guardianship) with reference to medical evidence relating to a person’s cognitive capacities or mental status.  Interestingly, issues of medical capacity, or what is commonly referred to as “decisional capacity,” is something in which the court system is rarely involved.  So this relationship between legal and medical capacity is not much of a two way street!

In this post I’m looking at where these two notions of capacity and incapacity can meet.  Sometimes we hear that an elder is not capable of doing something any longer – for physical, cognitive, psychological or emotional reasons, and we often fail to consider the intersections of these parts of each of us as people.  We must depend on the integration of those capacities for our continued functioning.  Sometimes it can be very difficult to determine whether a difficulty is short lived or temporary or whether it is a harbinger of greater difficulties which lie ahead.  We each face these challenges alone, but we must rely on others in this stage of our lives, just as we have in earlier, higher functioning stages of our lives – but most of us  struggle mightily with our vulnerability.  The NIH website has a list of resources available for dementia caregivers available here.

There is an intersection between disability law and elder law in the approach to how we facilitate the assisted decision-making on behalf of another as well as the living arrangements for an incapacitated adult.  This is the term  ”least restrictive means” or also “least restrictive environment.”   The former term is distinguished from regulatory and constitutional law, in the probate incapacity context it is the language of the preference for limited guardianship over unlimited or plenary guardianship.  For the latter, we see the term in the federal Individuals with Disabilities Education Act (IDEA) which refers to inclusion and mainstreaming, which are of obvious relevance and value to elders who are losing or have lost capacity (ies).

The parallels between the rights of the disabled and the rights of incapacitated elders are numerous.  A large number of elder law attorneys practice in both fields of law because there are so many similarities.  Here’s a link to the Guardianship Alliance of Colorado’s website, which has great resources relating to protecting adults with disabilities.

This determination of incapacity sounds like a one-way street from which there is no turning back, but that is not the whole story.  I came across an interesting article by law professor Nina Kohn and Catheryn Ross about how a person previously stripped of “legal personhood” can regain their legal status.  You can read “Lawyers for Legal Ghosts: The Legality and Ethics of Representing Persons Subject to Guardianshiphere.  The introduction recounts the story of Jenny Hatch, a young woman with Down’s syndrome who was a ward of the state and who successfully challenged not only the terms and conditions of her guardianship, but also her right to make decisions for herself.

Elders in Colorado are part of a “protected class” of persons in our elder abuse statute.  Some of my colleagues take offense at the reference to age because they are close to that age (70) and still don’t want to think of themselves as “old” or in need of protection.   I suspect they don’t consider themselves “old” because they don’t have enough youngsters in close proximity. . . .

What does incapacity mean for a person once a probate court has determined the person incapacitated?

Incapacity determinations by probate courts generally strip a previously capacitated adult of nearly all of their civil rights.  In Colorado, wards (what a person who is named as Respondent in a guardianship petition is called after the court determines the person is incapacitated and in need of a guardian) can still exercise their right to vote.  So once a persons is stripped of those civil rights, a ward essentially ceases to exist in many ways or is legally dead.  This is one aspect of vulnerability.

If you find this patently offensive, please consider the historical common law rules of marriage and property which were “imported” into North America by the colonists.  Hey, didn’t we recently celebrate our independence on the Fourth of July a month ago?! These “coverture laws” basically reduced the legal status of an unmarried adult (otherwise capacitated) woman from an adult to the legal status of an infant once she was married.  These coverture laws pertained to a married woman’s legal rights to own property, to sign contracts, make a will and many other useful matters.  A married woman was otherwise legally incapacitated, but she could seek relief from a court of equity.  Connecticut was one of the first states to establish the property rights of married women.  Back in those early days, the courts of law were separate from the courts of equity, the latter were often referred to as chancery courts.  Those courts were merged with courts of law in many court systems but still exist as separate courts in states like Delaware.  In Colorado’s system of “combined courts” a court sitting in probate is both a court of law (employing the statutory probate code as well as case law) and a court of equity.  Equity is specifically referred to in our probate code, but the two concepts are still legally distinguished from each other because they are different sources of law and the remedies it affords parties.

A ward can regain his or her legal status of personhood – but it can be daunting.  In Colorado, there is a special form for that.   A psychologist I know recently contacted me about getting this form and providing a supporting letter for their client – here is the form from the state judicial website JDF 852.  If imposition of a guardianship over a ward is legal death, then termination of the guardianship based on a restoration (or re-evaluation) of capacity is akin to resurrection.  I won’t go into the gnarly details about the attorney’s ethical rules of representing wards seeking termination of their guardianships, but the Kohn article above is an excellent overview of how attorneys can overcome some of the challenges inherent in our ethical rules to assist those persons in getting their legal personhood or at least some of their rights restored.  Attorneys need to assist these wards to protect fundamental rights.

That’s all for now….

© Barbara E. Cashman 2017   www.DenverElderLaw.org

The Continuing Adventures of the Psychopomp: What is the Vocation of a Psychopomp?

Inside the Rocca Majore

Inside the Rocca Maggiore

This is the first of a series of posts about our death-denying and death-phobic culture and the “usefulness” of a psychopomp as a means of understanding the meaning behind the denial and the denial of meaning.  If using the psychopomp seems like an odd choice for such a journey, please bear with me and know that these posts will be concerned with the meaning that is behind the fear and the denial.

To review briefly, a psychopomp is a conductor or guide of the dead to the world beyond this place.  In this respect, the purpose of the psychopomp is to accompany and sometimes convince a person who has died to let go of the familiar of this world – a person’s identity, expectations, possessions (physical and non-physical), status and many other types of “evidence” of our existence here in the life one has grown accustomed to living.  Just as most of us can remember being afraid of the dark, many of us are also afraid of the light.

I would begin with the observation that questions about the meaning of life and the significance of death often seem strange and foreign to us.  It strikes me that this is because these questions are part of the human condition but somehow – and quite effectively, according to our post-modern reductionist mainstream thinking, obsessed with the material world as the only “real world” – we have rejected such questions as impractical navel gazing.  This notwithstanding the fact that for all of human history, the meaning of life and its significance, have been among the principal problems of philosophy.  Only in our recent “scientific” post-modern era, have these questions and their meaning been declared to be meaningless.  I think of Dostoevsky here:

Man needs the unfathomable and the infinite just as much as he does the small planet which he inhabits.

Denial of death is essentially the denial of any meaning in death.  What is the consequential impact of such denial on any meaning of life?  Can the psychopomp assist here or is s/he merely an enabler of our fear of death?  Is death denial different from a belief that death is not “real?”  What if it is all part of the same mish-mashy stew – as observed by one author that “the affirmation that death is not real, that man has a soul and that this is immortal, arises out of a deep need to deny personal destruction, a need which is not a psychological instinct but is determined by culture, by cooperation and by the growth of human sentiments.” Theodosius Dobzhansky, The Biology of Ultimate Concern, at 78 (1967).

I think there is an important distinction to be made here between first, the  death denial as  denial of the fear of the unknown, the incapacity of our post-modern mindset to come to grips with reality beyond the objective and measurable and therefore to dismiss its existence and any attendant meaning, to basically pretend it isn’t there.  This is distinguished from the second kind of death denial in which the psychopomp may, if you will, play a role.  This kind of death denial is qualitatively different as it lends meaning to death as a form of the unknown, giving significance and substance to the mysterious transitions of this life – birth, death and all the transformations of self in-between.  Death here in the second type of fear/anxiety is simply part of life – accepted or not, it happens to all of us.  But what of the meaning of our dying?  Well, this is where I rely on psychopomp.

I think that one of the biggest problems we face, whether it is in the grips of illness, aging, disability or dying – is the meaning of our living and being here.  I propose death is like a mirror or our transitory and impermanent existence in any particular form.  Death denial is different from the fear of death (thanatophobia), and it in turn is distinguished from necrophobia – the fear of the dead.  The former is really a kind of anxiety more than it is a fear.  As a kind of fear, it is specifically a fear of the unknown, as none of us knows the manner of our death.  What does the fear mean in itself and what does the existence of the fear mean?

I like what Vassily Kandinsky wrote about white and black:

[w]hite,although often considered as no color (a theory largely due to the Impressionists, who saw no white in nature as a symbol of a world from which all color as a definite attribute has disappeared) . . . This world is too far above us for its harmony to touch our souls.  A great silence, like an impenetrable wall, shroud its life from our understanding.  White, therefore, has this harmony of silence . . . like many pauses in music that break temporarily the melody.  It is not a dead silence, but one pregnant with possibilities.

A totally dead silence, on the other hand, a silence of no possibilities, has the inner harmony of black. . . Black is something burnt out, like the ashes of a funeral pyre, something motionless like a corpse.  The silence of black is the silence of death. . . . Not without reason is white taken as a symbolizing joy and d spotless purity, and black grief and death.

V. Kandinsky, Concerning the Spiritual in Art, (M.T.H. Sadler, transl). at 48-49 (2013).

We navigate the world of the unknown every morning when we arise from sleep.  But yet, the unknown of death and dying seem insurmountable to many of us.  What if we draw on something familiar for our psychopomp, say . . .  the family dog?  In her book “Women Who Run With the Wolves,” Clarissa Pinkola-Estes observed that “[t]his little dog (in the Manawee saga) as psychopomp represents the instinctive psyche.  It hears and sees differently than a human.  It travels to levels the ego would never think of by itself.  It hears words and instructions that the ego cannot hear.  And it follows what it hears.”  C. Pinkola-Estes, Women Who Run With the Wolves at 131 (1992).

I will conclude this introduction to the series on the work of the psychopomp here with something hopeful perhaps – that the fear of death is essentially the fear of life, that our fears of being separate and distinct from others and our human need to belong derive meaning only from engaging in relationship.  That relationship can make possible the broader and deeper meaning and give meaningful context to the mysterious purpose of our existence.  I like Richard Rohr’s description of “life as mutual participation” (from his book “Eager to Love” at 234 (2014)) and I wonder why this participation would cease with one’s physical existence.  But that’s in another post. . . . !

©Barbara Cashman  2015   www.DenverElderLaw.org

 

 

 

Dementia and Memory: Out of Time, Out of Mind II

Mount Hope Angel

Mount Hope Angel

This second part of the post focuses a bit more on the qualitative aspect of memory – memory as meaningful life activity, not just a necessity of daily functioning and detail management that holds together moving parts.  I will include the quote from James Hillman I used in my first post:

Why do the dark days of the past lighten up in late recollection?  Is this a subtle hint that the soul is letting go of the weights it has been carrying, preparing to lift off more easily?  Is this a premonition of what religious traditions call heaven, this euphoric tone now coating many of the worst experiences, so that there is little left to forgive?  At the end the unforgiveables will never be forgiven, because in old age they do not need to be forgiven: they simply have been forgotten.  Forgetting, that marvel of the old mind, may actually be the truest form of forgiveness, and a blessing.

Hillman, The Force of Character at 93.  In case you’re wondering about whether I am promoting some Romantic view of memory or denying all the recent advances in neuroscience, I would unequivocally state “no.”  In fact, a favorite of mine in that discipline is Dr. Norman Doidge’s book published in 2007 entitled The Brain That Changes Itself.  Particularly instructive for purposes here is his chapter entitled “Turning Our Ghosts Into Ancestors,” about psychoanalysis as a neuroplastic therapy that helps a sixty-year-old man recover long-buried memories of the death of his mother (when he was a small child) so they could be transformed and improve his relationships and life.

I think part of what Hillman is talking about is that quality of memory, which often gets neglected in our present culture that glorifies the person as a right-bearing agent of our own destiny, valued for capacity, independence and measurable productivity.   This makes me think of Massimo Cacciari’s book The Necessary Angel.  I find intriguing what he says about our space-filling tendencies of this modern obsession  we have with chronological time, especially where he observes that “the greatest idolatry is the cult of the has-been of the irreducible it-was.”   Cacciari at 51.

If this obsession of the factual, objective or “forensic” memory is idol-worship of the “cult of the has-been,” and indeed widely and universally worshipped indeed as “chrono-latry,” then might the recognition that letting go of details that do not serve life review and accumulation of wisdom be an appropriate response to that greed, of releasing the power of the idols?  If we as human beings are more than our personalities accumulating and exchanging our experiences as a form of “currency,” then recognizing this and getting past the worship of the idols of chrono-latry would look like progress!

One very important aspect of the quality of memory for many elders is as a part of life-review, of integration and wisdom acquisition and consolidation.  Another of the qualities of memory is kairos.  It strikes me that our generation’s dependence on smartphones means that many of us need to memorize fewer of the important operational details of our lives.  This is of course liberating, but it is also a trade-off.  No, I won’t go astray here to discuss that issue!  Suffice it to say that the term “memoria” in the Western classical tradition is based on the Latin term for memory.  Memoria was one of the five canons of rhetoric, which grew out of oratory.  The classical orators used no notes, let alone Power Point slides!  I add this point to draw the connection between memoria and kairos – I’ve blogged about it previously.  Kairos being the right time, the opportunity, based on an attunement to the right time to recall memory – memory being identified in the Ad Herennium as “the treasury of things invented.”  So perhaps we might come to more closely examine and question our relatively recent and very narrow definition of what is memory and look at the historical notion of memory in its broader context.  This broader view of time in both qualitative and quantitative aspects will certainly diminish the power of the idols of chronolatry.

Yes, this reminds me of the Steely Dan song, Time Out of Mind – you can listen to it here.  This is life review, traditionally a province of poets to write about the letting go at the end of a life and there is thankfully much wisdom from that quarter.

From stanza IV of Dejection: An Ode, by Samuel Taylor Coleridge:

… we receive but what we give,

And in our life alone does Nature live:

Ours is her wedding garment, ours her shroud!

         And would we aught behold, of higher worth,

Than that inanimate cold world allowed

To the poor loveless ever-anxious crowd,

         Ah! from the soul itself must issue forth

A light, a glory, a fair luminous cloud

                Enveloping the Earth—

And from the soul itself must there be sent

         A sweet and potent voice, of its own birth,

Of all sweet sounds the life and element!

 ©Barbara Cashman  2014   www.DenverElderLaw.org

Dementia, Capacity and Old Age: part I

In our death-denying and youth-glorifying culture, how does dementia figure as a disease? Is there a cause? Is there a cure?  What pills can be prescribed?  We might choose to view dementia is a dark side of longevity.  Where we have unprecedented longevity due to medical advances, isn’t it right to wonder about what our lives are for – especially if we have more length of days to ponder the meaning.   As I frequently comment to clients, we have never had so many old people on the face of the earth before.  Many of the challenges we face in supporting  elders and caring for them – the legal, financial, medical, social and emotional challenges – are new problems and require new thinking.

Self-determination is important in medical care, this is why informed consent is required.  Perhaps because medical care is more of an ongoing need in most people’s lives, health care providers seem to be much more capable of embracing the gray area (no pun intended) of self-determination regarding patients with severe mental impairment, many of whom are elders with dementia.

In the legal context, an adult person retains the ability to make decisions for himself or herself, and this capacity is presumed by our legal system and continues generally until a person is determined to be “under a disability” meaning that a probate court has adjudicated the person incapable of managing very basic requirements for themselves.   Colorado law defines an incapacitated adult as one who is “unable to effectively receive or evaluate information or both or make or communicate decisions to such an extent that the individual lack the ability to satisfy essential requirements for physical health safety, or self-care, even with appropriate and reasonably available technological assistance.  Colo. Rev. Stat. §15-14-102(5).

But there are many practical shortcomings to the legal description of “incapacitated” and the requirement that a probate court is the only court capable of determining such, thereby stripping a person’s civil rights after a legal proceeding.  In this regard, the legal system, for better or for worse recognizes individuals’ rights to self-determination, even when that right to autonomy cannot effectively be expressed or communicated.  By contrast, the medical setting allows much more flexibility and recognition of people’s fluctuating levels of capacity and variable mental states.  If you have ever known a committed coffee drinker state “don’t ask me to decide anything that matters until I’ve had my cup of coffee” then you realize that the context for these fluctuations in mental states has always been with us.  These fluctuations tend to become more pronounced for many of us as we age, and for some people who experience cognitive decline that is disease related and not “merely” a function of aging.  So what does dementia look like?  The Alzheimer’s Association has described ten warning signs:

    1. loss of memory that is life-disrupting
    2. difficulty performing familiar tasks
    3. problems with language, word finding – written or spoken
    4. confusion or disorientation as to time and place
    5. poor or declining judgment
    6. difficulty with abstract thinking, visual and spatial orientation
    7. losing or misplacing things and inability to retrace steps
    8. changes in mood or behavior
    9. loss of initiative, withdrawal from work and social activities
    10. personality changes

 

What we often overlook is that these determinations are made relative to what our life was like before some fixed period of time, some diagnosis or a tragedy.  Often there is a traumatic event that wakes family members from their slumbering denial of an elder’s difficult situation.  Notwithstanding the lifelong fluctuation of our capacities, this line of capacity/incapacity gets narrower  and more pronounced as elders in frail health or with dementia move closer to the place of incapacity.

 

When we look at institutionalization, a focus on people’s autonomy and rights may sound an alarm bell when we think about the compromises and those made into real or perceived injustices leveled at frail or demented elders.  Some of these people may be subjected to physical or chemical (pharmaceutical) restraints, so as to make them more safe and more manageable in a community.  As long as we focus on the doing part of our autonomy at the expense of the being, we necessarily focus on the past and all the losses sustained.  We are unable to really see person as they are, in the present moment.  This at the expense of meaning.  I will close this post with a portion of a poem by Walt Whitman:

Old age, calm, expanded, broad with the haughty breadth of the universe,

Old age flowing free with the delicious near-by freedom of death.

Song of the Open Road, verse 12,  Walt Whitman

to be continued…

©Barbara Cashman     www.DenverElderLaw.org