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

 

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

Obstacles to Successful Elderhood: Skilled Nursing Care

denver elder law

Dome of Aspiration

 

I’m returning to the theme I introduced a couple months back about successful elderhood and its obstacles.  Today I’m looking at institutionalized care of American elders and in particular the costs versus care conundrum.

I recently came across two unrelated articles in the space of a single day and immediately saw a connection.  The first was this article from the New York Times, about the privatization of InnovAge, formerly a not-for-profit (which used to be known as Total Longterm Care) in the Denver area and the second article from the ABA Journal, about how the imposition of routine fines having little or no impact on deterring abuses at skilled nursing facilities.

Keep in mind that skilled nursing facilities (nursing homes) are some of the most regulated business in this country – regulated by both the feds through Medicare and Medicaid, as well as by state licensing and regulatory authorities.  Do these regulatory regimes lead to better outcomes?   The ABA Journal article would tend to weigh in on the “no” side of this answer. . .  That seems to be an open question, particularly in light of the shocking circumstances surrounding the death of a young mentally ill woman in SNF care – Letasha Mims, as described in the ABA Journal article above.

As an elder law attorney, I am aware of and often share the information collected by different state and local agencies about violations at nursing homes.  In case you’re wondering about Colorado nursing homes, here is a link to the CDPHE’s page about licensing and deficiencies.   Medicare has a handy tool to compare nursing homes here. You can enter a zip code and compare facilities quickly.

The story of Letasha Mims, however, makes me question the helpfulness and accuracy of that information collected by our regulatory agencies.   But the lingering question is a difficult one: when an elder or disabled person lives in a SNF which is a for-profit business, there is a nagging question about the adequacy of staffing at those facilities.    I am thinking of a recent book I came across – Elder Care Journey, (published in 2016 by SUNY Press) by Laura Katz Olson.  What Olson confronted in managing her elderly her mother’s care is something that faces each of us who has ever had to make the difficult choice of arranging for the care of a family member, like an elder parent, in a skilled nursing facility.

Olson writes eloquently about the personal journey of getting the best care for her frail mother, but what is most relevant for this discussion is the penultimate chapter of the book entitled “Peeling the Onion.”  In that chapter she looks at the system of care for elders including skilled nursing facilities (nursing homes).   She writes that the 2012 statistics indicate that sixty-nine percent of SNFs are for-profit organizations (mostly chains), but she reports that there is a recent trend toward private equity firms (like the one which is reported to have purchased InnovAge above) buying SNFs.  Olson notes that private equity firms have goals that include making quick profit so the business can be sold for a profit within five years; typically have protections against liability for substandard care which relate to the individual facility and not the chain which is the parent of the SNF; and private equity firms, unlike publicly traded companies, have little transparency about the inner workings of their assets, profits and ownership.  These important details don’t just seem to be at odds with providing adequate care, and they will likely contribute to a burgeoning number of substandard care.

Olson quotes at 152 (a 2001 study in the American Journal of Public Health) that “rates of severe deficiencies in investor-owned facilities were 40.5 percent higher than at nonprofit homes and 35.8 percent higher than at public homes.”  What will the numbers be for the present situation? This will likely be a topic of a later post. P Perhaps a relevant question for an adult child or anyone researching placement at a skilled nursing facility is the simple one of whether it is a for-profit facility and if it is, whether it is publicly-held or owned by a private equity firm.  Profit maximization for investors does not seem to be consistent with providing good care for our frail elders.

I focus on the SNF because of the institutionalized nature of such a facility and the relatively high level of medical care which is supposed to be provided.  And if you were hoping that Medicare was somehow an equalizer when it comes to insurance care for elders . . .  think again!  There is a growing shortage of doctors, particularly primary care physicians for elders, who take new Medicare patients.  For those elders in hospitals who are suffering from terminal conditions, here is a recent article from Health News, which addresses the shortage in hospitals of palliative and hospice care medical teams who are trained to discuss end-of-life issues, effectively manage patients’ pain and otherwise address the emotional and spiritual needs of those at the end of their lives.  There just isn’t enough money in providing palliative care under our Medicare program of incentivizing big intervention and the low-tech, high touch, human-fueled intervention of hospice and palliative care providers.  This reminds me of Atul Gawande’s observations in Being Mortal and Katy Butler’s book about her father and his health crises, Knocking on Heaven’s Door.

And what about Medicaid, that government long term care program that many people are curious about for their elder family members . . . Some studies have demonstrated worse outcomes for those Medicaid patients – whose doctors receive only a fraction of what other better insured patients receive.  Medicare patients didn’t seem to fare much better.  In case you’re wondering whether this divide continues, here’s an article from last month about worse outcomes for Medicare and Medicaid myocardial infarction patients.  We are spending money for these Medicare and Medicaid services, yet so many of the needs of the people receiving these services goes unmet . . .  what gives?!

Sorry, this post appears to be largely about obstacles, but perhaps they are placed before us so as to clarify what it is we need to fix for our loved ones and for ourselves.  Er, maybe this is an opportunity after all – but only if we make it one.  One thing is certain – it will not be an easy fix.

© 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

Social Media Abuse of Elders

Contrast

Contrast

 

I recently came across this horrifying article published Monday in ProPublica, entitled “Federal Health Officials Seek to Stop Social Media Abuse of Nursing Home Residents.”  It seems that some staff members of nursing homes are publishing photos, audio and video recordings of some residents in the social media like Snapchat, Facebook or Instagram, or sent in text messages as multimedia attachment.  These pictures, audio and video files often depict elder residents of the facilities s in demeaning and humiliating ways so as to result in mental abuse.   The Centers for Medicare and Medicaid Services has recently sent out a memorandum concerning this to the State Survey Directors.

Do the skilled nursing facilities have prohibitions against such intrusions in place?  Some evidently did not, but there can be little doubt that nearly all will have such protections in place soon in light of these disturbing developments.  Here’s an article about such violations in Ohio nursing facilities.

The CMS memo referred to above defines mental abuse as that abuse which:

[M]ay occur through either verbal or nonverbal conduct which causes or has the potential to cause the resident to experience humiliation, intimidation, fear, shame, agitation or degradation.  Examples of verbal or nonverbal conduct that can cause mental abuse include but are not limited to: nursing home staff taking photographs or recordings or residents that are demeaning or humiliating using any type of equipment (e.g., cameras, smart phone, and other electronic devices) and keeping or distributing them through multimedia messages or on social media networks.  Depending on what was photographed or recorded, physical and/or sexual abuse may also be identified.

ProPublica has been following this following these developments for many months and this article from December 21, 2015 details some of the incidents this mental and physical abuse of incapacitated elders perpetrate by the nursing home staff members.  In a case in New York where a nurse aide took photos of an incontinent resident’s genitals covered in fecal matter and shared them with another staff member on Snapchat, he was fired and pleaded guilty to a misdemeanor count of willful violation  of health laws.  What I found particularly disturbing was the comment of one home’s administrator to ProPublica that “[t]echnology is a problem for us, for everybody, these days… The resident involved was not harmed but certainly it was a serious incident.”  Are incapacitated nursing home residents not entitled to any human dignity and to be free from such exploitation for someone’s entertainment?

One of the incidents described by ProPublica is from August 2015.  It occurred in a rural area of Colorado and involved a youth volunteer at a nursing home who took a selfie which showed a 108-year-old resident urinating.  The volunteer apparently shared the photo with her friends at school and the facility did not learn of the offending photo until months later.  The volunteer was not monitored by the facility but did report to the local police, and was later charged with invasion of privacy.

What is human dignity when it cannot be defended by an incapacitated elder? What is human dignity when it is not readily apparent or recognized in places where people are institutionalized for the paramount concern of their safety?

Dignity, as in the legal right, is not easily defined.  In fact, you would be hard pressed to find many references to it in our laws.  International law, specifically the international law of human rights, has much more to say about human dignity, but that is another blog post!

I will close with just a couple observations and questions. . . .

If humiliation is the opposite of being treated dignity and respect, is our system of laws really equipped to deal with this type of new frontier of the rights of incapacitated persons to be free from intrusions by others who humiliate them for sport or humor?

Is the dignity of or respect for elders a right in this context or is it overshadowed by our concerns for safety, and how does an incapacitated elder’s diminishing bailiwick of autonomy factor into this equation?

On this note, here is a link to an interesting article about the dignity of elders.  More to come on this very challenging topic.

© 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

Successful Elderhood and Its Obstacles

littleton elder law

A Sideways Approach

 

I’m working up a new series of posts on the many obstacles along the path of what I will call “successful elderhood.”  Being that I am such an optimist, you might be wondering why I’m using the more formidable sounding “obstacle” as opposed to a much friendlier sounding term like “challenge.”  The Merriam Webster online dictionary defines obstacle as:

Something that makes it difficult to do something; an object that you have to go around or over: something that blocks your path.

I use the term “successful elderhood” because I know it is a loaded one! How we talk about aging reflects our thinking about it and often also our feeling toward it.  Is it merely a decline, a forced slowing down with no redeemable benefits  – or is it a process that can be incorporated into the accumulation of wisdom – for the benefit of the individual as well as their community?  Instead of quoting words of Viktor Frankl’s wisdom, I’ll quote the late theologian J. Sidlow Baxter, who asked

What is the difference between an obstacle and an opportunity? Our attitude toward it. Every opportunity has a difficulty, and every difficulty has an opportunity.

Obstacle and opportunity? Well, there’s a good one! I will try and use this as a template for paying attention to the lenses through which we view aging and elderhood.  Of course I’m showing my bias already, just from using the term elderhood – I’m presuming there is a stage of human development that is capable of a fuller embrace of the unknown, of the mysteries of life, that can allow us to love the  lives we have to live, despite all the odds and opinions to the contrary.  This certainly is not an easy path, it is probably beyond the tee shirt slogan “getting old is not for sissies,” so I’ll quote the Sufi poet Rumi here:

A heartbreak shakes the yellow leaves from

The branch of the heart

So fresh leaves can go on growing . . .

Heartbreak pulls up the roots of the old happiness

So a new ecstasy can stroll in from beyond.

Heartbreak pulls up all withered, crooked roots

so no root can stay hidden.

Heartbreak may pull many things from the heart

But in return it will lavish kingdoms.

From: Andrew Harvey, The Return of the Mother (1995) at 156.

This idea of “successful elderhood” brought me back to a great book I (mostly) read several years ago – Carol Dweck’s book Mindset: The New Psychology of Success (2006: Random House).  Dweck, a psychology professor at Stanford, wrote this compelling book based on her many years of research on motivation and other important topics.  Much of the book readily applies and is aimed at motivating kids and young people toward building the successful trait of resilience, and away from the ossifying talent-obsessed entitlement way of thinking about who we are and how we operate in the world.  Her basic premise, reflected in the title “mindset”, distinguishes the fixed mindset from the growth mindset and her work shows the advantages and offers much practical advice about overcoming obstacles (instead of ignoring or denying them) with a growth mindset.  Feeling bad about one’s situation does not mean that one is not able to take constructive action.  See Mindset at 221-24.

Whether we look at an obstacle as an external setback or an internal one can make all the difference.  If we change the lens through which we look at aging, that all our hard-earned capabilities are being taken away from us by some external subjective and unpredictable process known as “aging” . . . .  then perhaps all we are really looking at are challenges, challenges to our thinking in some fixed and no longer relevant context, a sense of entitlement to what we have earned, which invites us to go beyond those “yellow leaves” into a new and unfamiliar territory.

I especially liked what Dweck wrote about the growth mindset and self-control: “Then there are the setbacks.  They [people in a growth mindset] know that setbacks will happen.  So instead of beating themselves up, they ask: ‘What can I learn from this?  What will I do next time when I’m in this situation?’  It’s a learning process – not a battle between the bad you and the good you.”  Id. at 235.

Dweck’s approach is refreshing and liberating and has much to offer in support of a developmental view of elderhood.  Here’s a TedxNorrkoping video in which Dr. Dweck talks about “the power of yet.”

I will close for now and look forward to my next post on Elderhood and The Economy of Gratitude.   I will tip my hat to the motivation provided by my summer reading list, which has included Robert Emmons’ Gratitude Works!, Atul Gawande’s Being Mortal and Katy Butler’s Knocking on Heaven’s Door: The Path to a Better Way of Death.

Peace out!

©Barbara Cashman  2016   www.DenverElderLaw.org

 

Let’s Raise Awareness About Elder Abuse!

elder abuse awareness

Moonlight Near Westcliffe

For this last post of June, I wanted to circle back on the importance of raising awareness of elder abuse.  You can read the Presidential Proclamation on June 15, 2016, for World Elder Abuse Awareness Day right here and if you’re curious about the language of the Elder Justice Act, passed as part of the Affordable Care Act (as Title VI subtitle H, §§6701 et seq.), read this link.

In Colorado, as in nearly all other states, adult protection units are responsible for the reporting and investigation (along with law enforcement agencies) of elder abuse.  The Elder Justice Act is federal legislation which requires the U.S Department of Health and Human Services “to oversee the development and management of federal resources for protecting out seniors from elder abuse.”  Additionally, the U.S. Department of Justice is charged with taking action to prevent elder abuse.

The effective coordination of these county, state and federal efforts is of course a work in progress.  What we do know about raising awareness of elder abuse and exploitation is that it will lead to more reporting of such abuse.  Here is a link to a recent article in the Sacramento Bee which links the raised awareness of such abuse to a dramatic increase in reports to local law enforcement.   This is important to bear in mind as the baby boomers begin to become a greater proportion of the cohort affected by elder abuse and exploitation.  In my practice, I have unfortunately become familiar with national and international internet scams which relieve elders of their hard-earned retirement money.  This is a particular area in which the federal government might play a unique role as so much of our law of the internet is based in federal law.

Another tragic side effect of the victimization of elders, besides the shame, victimization and impoverishment which results from financial exploitation is that these elders, along with elder victims of all types of elder abuse – including physical and sexual abuse – are likely to die much sooner than their peers who were not victimized.  But many pieces of this puzzle remain unidentified due to the lack of long term studies which collect valuable statistics about elder abuse of various types! This is of course another aspect of the importance of raising awareness.  Because so much of elder abuse still remains unreported, this is a major quality of life challenge not just for elders and their loved ones and community, but also for those of us of “a certain age” who might be looking forward to a safe and meaningful elderhood.  How can we make things better for elders at risk now and in the future?

What is elder abuse and who are its primary victims of such elder abuse? By the numbers, they are largely women and the “old” of the elder population – meaning folks over 80.  Sadly, the vast majority of the abusers are family members of the elder or trusted friends or advisors.  Because most elders live in the community – not in institutions – this is a particular challenge for all of us who are community members to become familiar with the signs so that we can report concerns about safety, suspicious behaviors and the like to local law enforcement.

First – what are the kinds of elder abuse that we’re talking about? Here is a helpful listing from the U.S. government’s Administration on Aging website, which also has many helpful resources:

  • Physical Abuse—inflicting physical pain or injury on a senior, e.g. slapping, bruising, or restraining by physical or chemical means.
  • Sexual Abuse—non-consensual sexual contact of any kind.
  • Neglect—the failure by those responsible to provide food, shelter, health care, or protection for a vulnerable elder.
  • Exploitation—the illegal taking, misuse, or concealment of funds, property, or assets of a senior for someone else’s benefit.
  • Emotional Abuse—inflicting mental pain, anguish, or distress on an elder person through verbal or nonverbal acts, e.g. humiliating, intimidating, or threatening.
  • Abandonment—desertion of a vulnerable elder by anyone who has assumed the responsibility for care or custody of that person.
  • Self-neglect—characterized as the failure of a person to perform essential, self-care tasks and that such failure threatens his/her own health or safety.

 

And what about the warning signs of elder abuse which we can be more aware of?

  • Bruises, pressure marks, broken bones, abrasions, and burns may be an indication of physical abuse, neglect, or mistreatment.
  • Unexplained withdrawal from normal activities, a sudden change in alertness, and unusual depression may be indicators of emotional abuse.
  • Bruises around the breasts or genital area can occur from sexual abuse.
  • Sudden changes in financial situations may be the result of exploitation.
  • Bedsores, unattended medical needs, poor hygiene, and unusual weight loss are indicators of possible neglect.
  • Behavior such as belittling, threats, and other uses of power and control by spouses are indicators of verbal or emotional abuse.
  • Strained or tense relationships, frequent arguments between the caregiver and elderly person are also signs.
  • Changes in the elder’s personality or behavior, especially if the elder becomes withdrawn or despondent, questions to her or him can be very important in identifying a situation which may be the cause of the elder’s silent suffering.

Lastly, here is another helpful self-help resource specifically for Colorado residents – from Colorado Legal Services.  That’s all for now – but don’t forget . . . . Denver’s Senior law Day is coming up on Friday July 29, 2016 and will be held at the Denver Police Protective Association’s Event Center.  More details later.

© Barbara E. Cashman 2016   www.DenverElderLaw.org