The Colorado End of Life Options Act – On Our Ballot This November

Spring in Assissi

Spring in Assissi

 

Will Coloradans approve the ballot measure to allow physician assisted death in Colorado?

This is an update to previous posts about (unsuccessful) proposed legislation concerning physician-assisted death in Colorado and the ballot initiative which will be put in front of Colorado voters this November.  Click here to read the Colorado Secretary of State’s final version of the initiative.  Today’s post is a further conversation about this highly-charged topic.  I enjoyed reading this recent Denver Post piece by Jennifer Brown about use of language and terminology in this initiative and the wider debate.

The first observation is that I’m using the term I have previously employed – physician assisted death.  When I typed in the term to my search engine, what appeared in the results was “physician-assisted suicide” defined here as

The voluntary termination of one’s own life by administration of a lethal substance with the direct or indirect assistance of a physician. Physician-assisted suicide is the practice of providing a competent patient with a prescription for medication for the patient to use with the primary intention of ending his or her own life.

I use the term death because it is less inflammatory, but it is – by the very nature of the procedure – suicide.  Assisted death can incorporate both physician assisted suicide and voluntary euthanasia, and I note this is important.  While we’re talking about terms to describe the life-ending process which is facilitated by a physician, let’s look at a few important terms to help keep the terminology straight.

Euthanasia comes from the Greek meaning “good death” and the Merriam Webster online dictionary defines it as:

 the act or practice of killing or permitting the death of hopelessly sick or injured individuals (as persons or domestic animals) in a relatively painless way for reasons of mercy.

Within the definition of euthanasia are different types of euthanasia, including: voluntary, non-voluntary and involuntary.  Today I consider only voluntary euthanasia which consists of two kinds – active and passive.

Passive voluntary euthanasia: When someone executes a living will to direct that no life-sustaining procedures or artificial nutrition and hydration be offered in the event a person (known as the “declarant” for purposes of a living will) is determined to be unable to provide informed consent and suffers from a persistent vegetative state or terminal condition.  This practice (with important controls promulgated by state laws) was made legal by the U.S. Supreme Court decision in Cruzan v. Director, Missouri Dept. of Health, 497 U.S. 261 (1990).  It was the first “right to die” case heard by the U.S. Supreme Court, and discussed important aspects of self-determination, liberty interests and due process in the context of Cruzan’s family’s attempts to have Nancy Cruzan’s previously expressed wishes (orally expressed, not in writing) upheld.

Active voluntary euthanasia: This differs from the widely accepted passive form in that passive euthanasia involves a refusal or withholding of treatment and active euthanasia involves an intervention to give something –  a lethal prescription from a doctor – to provide the means to end a life.  Herein lies the distinction between refusal to provide or continue to provide treatment (recognized in our living wills) and the active choice of one’s own death, or suicide.

Can there be any middle ground here?  Perhaps.  If you consider the arguments for wider acceptance and use of hospice and palliative care – these focus on the treatment of the whole person to manage pain, a terminal condition or end of life medical care, and not just from the more mainstream exclusive perspective of medicine’s focus exclusively on a patient’s medical problems, often to the detriment of the patient’s quality of life.  So here is the question – if patients have access to good quality palliative and/or hospice care at the end of life, then is assisted death really necessary?  One way of looking at this is to consider that the rights-focused physician assisted death doesn’t adequately take into account the scope and range of palliative and hospice care which is presently available.

As we continue to age and live with (read: have our lives prolonged by) more drugs and medical devices, how we choose to remove those supports (like a pacemaker or similar devices) is part and parcel of our choice of living as much as it is how we choose for ourselves (and others) how we manage the end of our lives.  Here there is a distinction between the legal terrain (like a medical POA or a living will) and the medical terrain (a do not resuscitate is a medical order requiring a doctor), but this is longevity in the U.S. and most people don’t live their lives consciously regarding these distinctions.  Maybe it’s time to broaden the conversation . . .

© 2016 Barbara Cashman  www.DenverElderLaw.org

Guardianship and Self-Determination

View from Rocca Maggiore

View from Rocca Maggiore

 

In this post I’m examining the concept of self-determination in the post-adjudication context where a probate court has determined in a protective proceeding known as a guardianship (the concept also applies to conservatorship proceedings) that a protected person, now referred to as a “ward” is incapacitated and a guardian is appointed for that person.  In the guardianship context, after a person’s civil rights are essentially stripped away (but leaving intact the inalienable right to vote) in a court ruling, it might seem that a discussion of the self-determination rights of a ward would be a bit late.  This is most definitely not the case.

While the rights of a guardian over their ward are typically plenary and unlimited, this does not mean that a guardian can simply ride roughshod over the ward’s circumstances, personal preferences, desires and stated wishes.  There are important legal principles to consider in this context.  The Latin term “parens patriae” is the fundamental basis for guardianship law, the basis for a court to curtail an individual’s civil rights and name another to act on the person’s behalf.

Self-determination also factors into self-determination theory, which offers an explanation for human motivation in psychology.  This theory explains motivation in two different forms: autonomous or controlled.  This is relatively well-studied in the context of employment and employee motivation, but I couldn’t’ find many works on this theory in the elder protective proceedings setting.  Why wouldn’t it be as straightforward as the “four S’s” that motivate us as described in this Forbes article that we want to feel: successful, socially valued, smart and structured.  I realize this is a stretch when I am talking about someone with advanced dementia for example, but I think that many individuals who have trouble thinking could benefit from this approach to honor the autonomy such that it is.  Perhaps if we could think a bit more practically about how to apply the upper end of Maslow’s hierarchy: esteem, love and belonging. . .

Self-determination has a longer history in the disabilities rights legal context, and elder law and protective proceedings share many of the same principles.  Probably the most well-known is the doctrine of least restrictive alternative.  That term which borrows from the more broadly known “least restrictive environment” which is a common thread of much of the federal law of special education and relating to rights of the disabled.

So back to the self-determination of a ward.  What we are looking at is self-determination in a highly personalized relationship – that between guardian and ward.  The analogies offered above, from psychology and in the motivation context do offer some food for thought here, but I think the fiduciary relationship is still the most applicable baseline.  This means a subjective standard of looking at motivation and conflict in the guardian-ward relationship and how it plays out in the larger implications of the ward’s ongoing right to self-determination.  I think the incapacitated ward, like people with dementia in general, have much to teach those of us who are not afflicted with such trouble with thinking and managing our behavior.

After appointment, the guardian is accountable – to the ward, to interested persons (usually other family members) as well as to the court.  Under Colorado law, the guardian is a fiduciary and is held to a heightened standard of care.  The Colorado Bar Association has a couple helpful brochures available for guardians and for conservators.  It explains the fiduciary duties of a guardian to include the following: a fiduciary duty to the ward, meaning that you must always act in the best interest of and with undivided loyalty to the ward; make efforts to include the ward in all decisions and encourage self-sufficiency; avoid transactions that cause a conflict of interest; and make all decisions with care and prudence.   Acting in the best interests of the ward means also that a guardian is expected to consider the ward’s known and reasonable desires and personal values when making decisions on behalf of the ward, and must otherwise become and/or remain personally acquainted with the ward.

I think what the fiduciary duty covers generally here is an instruction to honor the ward’s dignity and rights (such that they are) to self-determination – to allow the ward a portion in exercising autonomy to an appropriate extent.  Here I bristle at the thought of our current obsession with the person’s safety, as if safety were the only thing that mattered in the care (or warehousing) of elders with dementia!  Safety is without doubt important, but it must be considered in context of quality of life and a person’s dignity.  I’m thinking of part of the Rumi poem “A Community of the Spirit,” on this point:

Why do you stay in prison
when the door is so wide open?

Move outside the tangle of fear-thinking.
Live in silence.

Flow down and down
in always widening rings of being.

Self-determination and autonomy – I’m wondering out loud whether it is possible to consider these important baseline values in a holistic context and not just as what the guardian owes the ward, or what the expectation of a court is relative to the guardian’s actions.  Self-determination is simply too important to not take seriously in the guardian-ward context.  I first wrote about this important right of self-determination of elders in the context of participation in mediation in an article I published in the March 2010 (volume 39, no. 3) issue of The Colorado Lawyer entitled “Elder Mediation Comes of Age in Colorado.”   Until the next post . . .

© Barbara E. Cashman 2016   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