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

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

Successful Elderhood, Autonomy and Driving

 

Columns of Support

Columns of Support

Last week I was driving from my office in Littleton to my dental appointment in southeast Denver. I took a familiar route, proceeding down the twists and turns of Monaco Parkway as I proceeded north of the Denver Tech Center. I’m not in the habit of recounting my driving experiences in these blog posts, but that afternoon was different because I called 911 while underway.  . . . There was an elderly driver who was driving in the parallel northbound lane alongside me for several blocks and then he moved over (negotiating the median in a sort of left turn) to the southbound side of the parkway as he proceeded northbound (at 30 mph or better). Luckily there were no cars for the four or so blocks he drove down the wrong side of the parkway, so a head-on collision was avoided.  He corrected himself and ended up driving behind me for several more blocks before turning off from Monaco Parkway. I didn’t think it was a drunk driver – I suspected it was a confused driver.  Just a couple days before a colleague from one of my listserves had asked me about what could be done regarding contacting someone about an elder he knows who has much difficulty operating a motor vehicle.   This is a tricky matter!  He forwarded me the email he received from the commander of the metro district for the Colorado State Patrol, which advised him to

Dial *CSP(277) from a cell phone if you observe dangerous driving behavior.  Of course, if the situation rises to the level of an emergency, you can always dial 911.  These situations are particularly difficult as pro-actively requiring a person to submit to a re-exam for their driving privilege can only be initiated by a family member or a physician.  Law enforcement can make the request but only after observing driving actions that would support the need.

I was reminded of the 14-year-old boy who was killed in southeast Denver by an 81-year-old driver with a history of driving problems.  This issue of when it is time to turn over the car keys is a difficult one for many elders as well as their family members because alternative transportation arrangements are required to get the elder to the grocery store, appointments and other places.  Many elders will not willingly give up their car keys and sadly, it often takes a crisis or an accident for the elder and family members to realize driving is no longer a safe option for the elder.

One of the other factors (besides requiring alternative transportation for a car-less elder) contributing to the difficulty of determining when driving is no longer safe is the challenge of getting a diagnosis of dementia.  This fear of such a diagnosis is shared by elder and family members – which is why I have referred to dementia as being “contagious” in the sense that we are all afraid of it – for the elder and for ourselves as family members.

So when do we decide and how do we decide, as individuals, families and communities – when we are no longer able to safely operate a motor vehicle?  Do we tenaciously cling to our badge of independence?  A Rilke quote comes to mind here:

The transformed speaks only to relinquishers.  All holders-on are stranglers.

From: Uncollected Poems by Rainer Maria Rilke, translated by Edward Snow, 1996.

What part of our identity as autonomous persons is our ability to be able to drive?  This concern with safety is a distinct one because it involves operating a car and all the dangers that poses to the drivers and others on the roads (or sidewalks).  Here is a recent article which addresses the challenges to driving a car which are faced by the growing number of persons diagnosed with Alzheimer’s Disease.  How do we negotiate the changes in our lives and our ability to manage for ourselves as we age?  These questions do not have easy or even simple answers, but we must nonetheless grapple with them!  I think another poem is in order. . .. this one entitled “Sunset:”

Great carnal mountains crouching in the cloud

That marrieth the young earth with a ring,

Yet still its thoughts builds heavenward, whence spring

Wee villages of vapor, sunset-proud. —

And to the meanest door hastes one pure-browed

White-fingered star, a little, childish thing,

The busy needle of her light to bring,

And stitch, and stitch, upon the dead day’s shroud.

Poises the sun upon his west, a spark

Superlative,—and dives beneath the world;

From the day’s fillets Night shakes out her locks;

List! One pure trembling drop of cadence purled—

“Summer!”—a meek thrush whispers to the dark.

Hark! the cold ripple sneering on the rocks!

E. E. Cummings (or e.e. cummings, if you prefer)

I will write more on this topic soon.

© 2016 Barbara Cashman  www.DenverElderLaw.org

Colorado End of Life Options – A Follow-Up

denver elder law

Spring Orchid at DBG

 

I’m writing this as a follow-up to my last post, which elicited a heartfelt comment from a subscriber and a fruitful discussion on LinkedIn. . .

Voluntary euthanasia is when death is chosen by a person, when they are killed with their own expressed consent.  These types of requests and the consent needed for such must be clear.  To review a bit – passive euthanasia is when a person makes an advance directive in the form of a living will in which the person indicates the level of medical intervention – or lack thereof – in the event they are in an end-of-life scenario.  In the Colorado Medical Treatment Decision Act, Colo. Rev. Stat. 15-18-101 et seq., we distinguish between persistent vegetative state and terminal condition as the triggering circumstances for the application of the living will.  Persons dying according to the terms of their living will may direct in advance the withholding or withdrawal of certain medical interventions which would tend to prolong or sustain life. The Living Will is in essence a statement of wishes and the persons involved in providing for assisting with another’s grave medical condition must be aware of its existence and its contents.  Unfortunately, what sometimes happens is that an elder goes to a senior center or some other place to fill out a living will form, but the elder neglects to inform their family members they have done so.  No one knows of its existence or contents and so it is of no value.  This is why having “the conversation” – especially with one’s health care agent – is so valuable!

So, let’s get on with the discussion at hand.  Many of us have experience with active euthanasia in the form of “putting down” a beloved pet.  When my dear old dog Pepper was nearly paralyzed, we made the decision to euthanize her after considering the alternatives.  When two of my sons and I were with Pepper at the vet’s office (sitting on the floor with her, stroking her and telling her how much we loved her), she was injected with the drugs that would end her life.  The vet commented to me – “I wish we could do this for people.”

This is the paradox of passive and active euthanasia – that active euthanasia is more humane in that it hastens the death to alleviate the suffering, while passive euthanasia requires the withholding of the means of sustaining life – which means a person can go quickly if they are dependent on breathing support or. . . .  they will slip away slowly as they starve to death.

It occurs to me that many of us don’t think of the living will as a statement as to the form of euthanasia preference – or if there is no preference for such.  Is the living will a document that tells our loved ones to “let us go” or is it a document that gives the patient’s preference as a statement of self-determination, to be free from the unwanted interference of others?  Can it be both?

There are of course a wide variety of living will forms available.  While the documents are acceptable forms of stated preferences regarding euthanasia, different religious communities have their own preferred documents in compliance with their laws or traditions.  What is the distinction between letting someone die by not intervening and allowing a person to die by their own choice with the assistance of a doctor?  Is there really a bright line between the two?

Getting back to the “letting go” versus “self-determination” purposes of the living will, how do these play out in the context of active euthanasia or physician assisted death (as in the Colorado End-of-Life Options initiative)?  These tensions are even more pronounced in this context.  Where is the distinction between one’s not wanting to be a burden on loved ones and the subtle coercion that a gravely ill person may feel to “get on with” dying so that their loved ones can be liberated from the burdens of caring for the sick person?  I certainly am not suggesting answers.  What I am concerned about is that people seem to look for answers without regard to the question and what it entails or requires.

An exclusive focus on the self-determination rights of gravely ill people to be statutorily allowed to take their own lives – with the assistance of medical doctors – skews the discussion.  I liked Jennifer Ballentine’s article entitled “Law & Sausage: Physician Assisted Death and the Solution to Suffering.”  You can read it here.

The attraction is clear – to focus on the individual right to extend medical self-determination to include physician assisted death is a very American pastime!  We have a long tradition of championing and enshrining individual rights.  But in the context of active voluntary euthanasia, or end of life options, such exclusive focus myopically steers that discussion away from the critical context of the exercise of such a right [author’s disclaimer: I wear corrective lenses for correction of nearsightedness].  This right would certainly not exist in a vacuum.

I don’t think it is too much to consider a look at the bigger picture here and to identify in advance of our ballot choices this November the many unintended consequences which would flow from our choice.

© 2016 Barbara Cashman  www.DenverElderLaw.org

Guardianship of an Elder – Some Important Considerations

Delicate Flower

Delicate Flower

As the number of retirement age baby boomers continues to rise, we continue to grow our unprecedented proportion of old people in our population.  What does this mean for our future?  Well, lots of different things, but I’m focusing on an often neglected side-effect of our longevity: the likelihood of incapacity.

Capacity itself is a broad topic in the law.  In my area of practice – we typically follow the question whether someone has (or had) capacity with the focusing query – capacity to do what?  Execute a power of attorney, sign a will, direct one’s medical care?  Here’s a link to a document from the American Geriatrics Society about medical capacity that is an excellent Q&A on the topic of capacity in the medical decision-making context.

There are often many ways to enhance someone’s capacity if they are facing cognitive challenges.  Some of these enhancements can assist greatly where the deficit in capacity is of a more temporary nature, such as confusion.  Confusion can have a wide array of sources including alcohol or substance intoxication; poor heart or lung function (resulting in e.g., hypoxia); malnutrition or dehydration; blood sugar too low or too high; medications not managed effectively or withdrawal of medication; head injury or other bodily trauma; infection. Insomnia; and a number of other diseases and conditions.  I mention these to contrast them with a kind of capacity that is typically not temporary and likely to diminish further as the underlying disease progresses or as the condition worsens.  The kind of incapacity I am considering is not the temporary or reversible kind.

There are a number of medical conditions or diseases which can affect capacity as well.  For example, there are several types of dementia including Alzheimer’s disease, alcoholic dementia, vascular dementia, frontotemporal dementia (Pick’s disease is one example) and Diffuse Lewy Body dementia which can occur with Parkinson’s disease.  For our purposes in Colorado, one relevant statutory reference is to C.R.S. 15-14-102(5), which concerns the definitions for protective proceedings:

“Incapacitated person” means an individual other than a minor, who is unable to effectively receive or evaluate information or both or make or communicate decisions to such an extent that the individual lacks the ability to satisfy essential requirements for physical health, safety, or self-care, even with appropriate and reasonably available technological assistance.

In the context of the medical conditions and diseases which cause dementia, a major goal of a capacity determination is to not just identify the disease, condition or injury which is the cause of the ongoing dementia (and which often progressively worsens over time), but to identify and promote the AIP’s self-determination and other rights to the extent possible.  Planning for the future can typically be accomplished even after a diagnosis or dementia such as Alzheimer’s.  The Alzheimer’s Association has a helpful brochure here.

While a person with dementia faces a host of challenges to their autonomy and self-management of activities of daily living (ADL), appointment of a guardian for an alleged incapacitated person need not necessarily be a self-fulfilling prophecy in that taking the AIP’s rights away makes them less competent.

Here is a link to the Colorado Judicial Branch’s website which contains helpful information about adult guardianship in Colorado and the probate court process known as “protective proceedings.”   The Guardianship Alliance of Colorado also has helpful resources, particularly pertaining to the expectations and duties of a guardian for an adult.  Finally, here’s a link to the 2016 Senior Law Handbook, published by the Colorado Bar Association.  Chapter 26 is devoted to guardianship of adults.

So what is the overall nature of an adult guardianship proceeding?  It is called a protective proceeding because its underlying aim is to protect the well-being of vulnerable adults.  This protection comes at a steep price however, the near complete stripping of civil rights of the AIP.  The ward will retain the right to vote, however.  So what is the task of a petitioner (the person seeking a guardianship) and what is the court’s role?  Within the context of protecting a vulnerable individual and based on all the cognitive and other deficits which prevent the person from functioning at an autonomous level, there are many losses sustained.  Amidst these losses, however, is the person’s ongoing right to self-determination.  Self-determination is an ancient right as far as the law goes, part of the inviolable rights which set apart humankind from other beings in the animal kingdom.

Self-determination is something not often discussed except in the most desperate of circumstances, hence its relevance to this discussion.  A basic precept of international human rights law (particularly in the post-colonial era), in our country’s history, it has been relevant to American Indian peoples, the disabled and other marginalized groups in our legal history and is enshrined in many countries’ constitutions.

In the future, I will be taking a further look at how the self-determination of a ward (after judicial determination of incapacity) can be supported by a guardian.

© 2016 Barbara Cashman  www.DenverElderLaw.org

Death – the Ultimate Concern of Elderhood

Chimayo Cherub

Chimayo Cherub

In this post in my series I will revisit the notion of a good death in the context of how we see our lives.  So I’ll start with a question: What do we have or what is it that is ours in the sense of that being part of our life?  I’m posing this in terms of a sense of meaning, an awareness or appreciation of ultimate meaning of or purpose to one’s life – as we face our mortality and everything in between along our life’s path – like illness, grief and profound life crises (to name just a few).

The world breaks everyone and afterward some are strong at the broken places.

Ernest Hemingway

Death is the ultimate question in this regard – the “all stop” for all that has happened in our lives, all that we have participated in to create our lives.  Every living being eventually dies as each of us will one day pass away, but how do we see this ending as part of our own life, in terms of one’s own experience of isolation, connection and relation to others?  Can our life prepare us for our unknown ending? Whether elderhood – either or own or our participation in other’s elderhood (as adult children for example) or our longevity prepares us to be resilient or brittle in this regard is a difficult question indeed.  One writer has observed that “human beings primarily collect” and these collections of experiences (and things as representations of experience) form our identity and notion of self, but Jacques Lusseyran also observed that “seeing is responsible for the prevalent conviction that we shall understand and completely recognize the world when we progress from one form to the next, from one phenomenon to the other.”  In his posthumously published collection of essays “Against the Pollution of the I,” (2006: Morning Light Press) Jacques Lusseyran (who lost his eyesight in childhood) noted that “[w]hat simply has to be understood is that seeing is not the work of the eyes alone.” Id. At 58.  Lusseyran is keenly instructive on the point of the sighted taking for granted that what they see is all they see, and is all that exists.  Lusseyran notes further

I believe that blindness has its own function.  It has the tasks of reminding us that the despotism of one sense, sight, is unjust, and of cautioning us against the form of perception prevalent today.  And, further, it is the task of blindness not only to recall to memory the origin of all knowledge, but also to remind us of the wonderful gift that permits a mutual exchange between other forms of perception and perceived pictures.

From “Blindness, a New Seeing of the World,” in Against the Pollution of the I at 64.

As we examine the place of elderhood and our own inevitable demise, can Lusseyran the blind writer who describes the seeing he experiences as not limited to the visible surface of things, or of people, point out to us the limitations of this superficial mistaking of what is real?  I would submit that this has become a kind of collective amnesia, this affliction of our death denial and our obsession with youth, particularly looking or appearing young.  I might be digressing just a bit, but it’s hard to say!

A person without an inner life is a person with nothing added: an empty sack which therefore cannot be filled and cannot remain standing.

Johannes Tauler

So, back to the question posed at the end of my previous post, about the difficulty of adjusting our thinking about human frailty in the face of aging.  This is a fundamental question for which few of us have prepared.  In our collective viewing of the superficial aspect of old age, we have come to largely identify aging as a medical problem or challenge – to be managed or overcome.  Is this failure to see the person in front of us, the insistence on “seeing” only the superficial aspects of who they appear to be our own form of collective blindness?  In the medical context, amidst the prevalence of hyper-specialization, is the medical care for elders largely a habitual reaction to some piecemeal medical problem a failure to see the big picture of a human being as a person and not as some collection of medical difficulties?

I am still reading Katy Butler’s excellent book “Knocking on Heaven’s Dorr” and in her penultimate chapter “A Better Way of Death,” she describes the reactions of many readers to her New York Times Magazine article about her father, his pacemaker and its complications to his dying process.  It took me right back to the events leading up to my mother’s demise.

My mother was a strong and healthy 85-year-old woman who had a couple years prior survived a pain in her thigh – which turned out to be a staph infection resulting from the titanium which was surgically pounded into her broken femur and was (after many months of complaining to her doctor) after a proper diagnosis removed.  But she was not in a good place when she started thinking about and demanding a hip replacement.  After all, she had survived two previous knee replacements – one in her 60s and a second in her early 70s, so she was a veteran of such surgeries.

But in the previous year before her longed-for hip replacement she had lost her husband of 59 years and two of her three sisters.  Did her surgeon or her primary care physician ever consider these details? I will probably never know.  It was not part of the provision of her informed consent, that much I know. Keep in mind that under our Medicare system, doctors get paid well to intervene in such ways, even though her surgeon was someone otherwise known as “conservative.”

I will not soon forget the look of indignation on the surgeon’s face when I (her health care agent and only daughter) asked him about a DNR (do not resuscitate) in the event something went terribly wrong in the surgery.  This on the morning of surgery after I had done some wrangling with the anesthesiologist about which anesthesia cocktail would be used as I was insistent on using the least invasive method first.   Within two months she was gone from this world.

To be continued. . . .

© 2016 Barbara Cashman  www.DenverElderLaw.org

Successful Elderhood and A Good Death

littleton elder law

Mercury and his Caduceus

This is my second installment on the theme of successful elderhood and its obstacles.

In this post, I am revisiting the theme of “a good death.”  I first wrote about this in 2013 and recounted my experience with my father’s death at his home in 2010.  As I write this post, I am reminded that this theme is picking up more attention.

Perhaps I will start with the practical first – how does one, with her or his own planning or good fortune, as well as with the assistance (and sometimes this is a difficult term to use in this context) of loved ones or others – pull off a good death?

Let’s start with some numbers here.

Here are some recent (released 4/16) figures from the U.S. Centers for Disease Control and Prevention which shed light on older persons’ health and mortality.  Looking at the data in NCHS data brief No. 182, from January 2015 – it states:

From 2000 through 2010, the number of adults aged 85 and over in the United States rose 31%, from 4.2 million to 5.5 million, and in 2010, this age group represented almost 14% of the population aged 65 and over (1). It is estimated that by 2050, more than 21% of adults over age 65 will be aged 85 and over (2). Given this increase, adults aged 85 and over are likely to account for an increasing share of hospital utilization and costs in the coming years (3). 

 This is an interesting report – it offers a solid basis for my concern when I hear of one of my old (85+) clients being hospitalized!  When we look at hospital admissions for the old of the old (folks 85 and over), we see the top six causes (for 2010) for hospitalization as: congestive heart failure, pneumonia, urinary tract infection, septicemia, stroke, and fractured hip.  The likelihood of hospitalization for any type of injury for the 85 and over cohort was higher than the rate of either of the 65-74 or 75-84 groups.  The same group of 85 and over was also the least likely to be discharged to home and the most likely of the three groups to be discharged to a long-term care facility or to die in the hospital.  Of note here is the 6% figure for deaths, which is double that for the 65-74 group.

How many septuagenerians and octogenarians plan for or talk with others (from whom they will need support for their decisions and choices) about “a good death?”  Well, I haven’t seen any real statistics on that!  Keep in mind that Medicare recently (in January of 2016) started paying doctors for having an end-of-life consultation with their patients, so that seems like a good start. But there may be a glitch to that simplicity, as information used in a recent Forbes article shows that almost a third of doctors say that they don’t really have a formalized system of talking to patients about such matters and the same percentage (29%) they haven’t had any training on how to talk with patients and their families about such topics.

So with this rather bleak picture of the status quo before us, how is it that we can better come to grips with forging a better – more humane and dignified – path to death?  Where are the sources of this helpful information? Well, we can start by listening to the dying!  Keep in mind that dying isn’t simply a medical process, a failure of intervention or curative   measures – it is a physical process which is inevitable for every living being.  Palliative and hospice care offer  means toward that end in the medical context, but as we know there are often a number of emotional, legal, financial, psychological and cultural obstacles which can appear at the end of one’s life.

I liked this article from The Greater Good which offered the following points under the subtitle “how to die well:”

  1. Experience as little pain as possible;
  2. Recognize and resolve interpersonal conflicts (it lists Dr. Ira Byock’s Four Things here) to say  – I love you; thank you; I forgive you; and please forgive me;
  3. Satisfy any remaining wishes that are consistent with their present condition;
  4. Review their life to find meaning;
  5. Hand over control to a trusted person, someone committed to helping them have the kind of death they desire;
  6. Be protected from needless procedures that serve to only dehumanize and demean without much or any benefit; and
  7. Decide how social and how alert they want to be.

These seven means seem simple enough – but remember the big difference between simple and easy! Can any of us really know when death is near, when the dying part of our life or another’s is taking place?  If we start considering the possibility, then we see opportunities.  But these questions obviously don’t have definitive answers!  For all of our talk about health care self-determination, we – not just the individuals making the advance directives, but also upon those on whom the dying rely for assistance, have precious little experience with really thinking through the “what happens if” and the “what happens when” scenarios.

So I will close this post with two challenging questions –

How difficult will it be for someone over 85 to not be transported to a hospital for treatment at the end of a long and difficult illness  – particularly if the trip to the hospital is for the treatment of an injury that is not related to the terminal or chronic illness?

How difficult is it for us to adjust our thinking about these things as we age and become more frail and less able to withstand the medical interventions which were more likely to be restorative or curative in our younger years?

PS Don’t forget that Friday is Denver’s Senior Law Day! The morning event is scheduled for the PPA Event Center and you can buy your tickets here.

© Barbara E. Cashman 2016   www.DenverElderLaw.org