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Capacity and Incapacity Considered

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Swirling

As a growing portion of our population continues to age, we are more frequently forced to confront the question of capacity.

What is capacity and why should we care? 

As we continue to enjoy unprecedented longevity, we face greater likelihood of incapacity in our future.  Sometimes this incapacity is short-lived or temporary but for many of us, particularly for elders, it can become an issue that plays out over time and can result in a permanent incapacity.  There are very few “bright lines” to define what is capacity and what constitutes incapacity generally, but there are many useful contextual and functional definitions of capacity to assist us in this effort.

I believe that the more we can learn about how these capacities and incapacities present themselves in the context of our daily lives, the better equipped we can become to help detect and prevent elder exploitation and abuse.  This post is about three particular types of capacity along the capacity continuum.  I use the term “continuum” because it is easy for many of us to think (or rather, wish to believe) that this capacity question is relatively straightforward.  It is not!  Like so many other aspects of human doing and human being, it can get quite complicated.

I’ll look at three familiar types of capacity here to put the question in context.

  1. Capacity to Make Medical Decisions

These medical Informed consent issues can include a range of capacities relating to what a patient is being asked to do – there is a range from the “mundane” question of whether the patient give informed consent to medical treatment or to decline such treatment; if the patient wishes to name a health care agent to make decisions for them in the event of their incapacity; and what about the capacity to make end-of-life wishes known with a living will?  Here the functional elements of these capacities can be broken down into four basic parts:

(a) To express a choice: The standard of expressing a choice refers to patients who are seen to lack capacity because they cannot communicate a treatment choice, or vacillate to such an extent in their choice that it is seen to reflect a decisional impairment;

(b) To exhibit understanding: The standard of understanding refers to the ability to comprehend diagnostic and treatment related information and has been recognized in many states as fundamental to capacity.

(c) To appreciate the implications of a particular choice or course of treatment. This aspect capacity has been described as the ability to relate treatment information to one’s personal situation. The standard of appreciation can reflect the patient’s ability to anticipate or infer the possible benefits of treatment, as well as to accept or believe a diagnosis.

(d) To rationally process information. This reasoning aspect of capacity involves the ability to recognize and offer rational explanations or to process information in a logically or rationally consistent manner.

Each of these aspects of medical capacity are interwoven into the ongoing conversation of one’s medical treatment and are of course highly subjective in many ways due to the individual patient’s own preferences or style of communication.

  1. Capacity to Drive an Automobile

This one is big for us Americans who don’t have so many public transportation options! The ability to drive is often one of the last things to go because it can in some ways restrict an elder’s ability to go places on their own schedule.  The AARP has an online defensive driving course and AAA has resources for getting evaluations of one’s driving skills as well as clinical assessments, but the “official” Colorado program is the Drive Smart program – click here for more information about it.  Under Colorado law, doctors (and optometrists) can provide medical opinions to the DMV concerning a patient’s medical condition and the patient’s physical or mental ability to safely operate a vehicle.  For more information about when an examination is required, here’s a link to a power point about it from the Colorado Coalition for Elder Rights and Abuse Prevention.

  1. Capacity to Make a Will

As an estate planning and elder law attorney, I meet with prospective clients and must make capacity determinations as a matter of course.  The ABA has a handy guide for lawyers and psychologists concerning assessment of a person’s capacity.  It is available here.  In order for an attorney to represent a client, an attorney must first establish that the potential client has the capacity to hire the attorney as well as direct the activities of the attorney.  We have a special rule of professional conduct which applies to clients with diminished capacity.

Historically, this testamentary capacity is at the lowest level along the capacity continuum.  In Colorado, the law is a bit less clear since the Breeden case, but  many states still recognize testamentary capacity as a separate and special category.  The Colorado probate code allows for a protected person (a person under a conservatorship) to make a will through the conservator. See Colo. Rev. Stat. §15-14-411.

One of the aspects of this low level of capacity required to exercise our testamentary freedom is that a will can be subject to challenge under some circumstances.  The person’s ability to make a will, or their testamentary capacity, can be the subject of a lawsuit known as a will contest.  Challenges to testamentary capacity often revolve around “undue influence,” in which a person challenges the will (and sometimes nontestamentary transfers as in the recent Colorado Appeals Court decision in Estate of Owens v. Dominguez).  Undue influence depends on many situational factors but generally can require a showing by the one challenging the will that: a person standing to benefit from the new will was in a confidential relationship with the testator (person making the will); that the person received a substantial benefit; from the testator who was suffering some mental, social or psychological impairment which compromised the testator’s mental capacity or independent thinking.

To conclude this post, if we think of capacity not just as a concept but as grounded in a particular context – as illustrated by the examination of capacity to perform a particular task, we can go much further in our examination of how much capacity is required and whether the requisite capacity is lacking.  From this contextual basis, we can then take a look at what type of assistance to “facilitate capacity” is appropriate and what kind of “assistance” is actually interference indicative of improper influence, exploitation or abuse.  I’ll write more on this topic this summer.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

 

World Elder Abuse Awareness Day, June 15, 2017

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Face on the Rock of Cashel

This isn’t my first post about World Elder Abuse Awareness Day or WEAAD for short. It’s an annual post for me on this day – last year I looked at the “international” part of WEAAD, as well as the national (federal) focus.  This year I will focus on a local aspect – as in Colorado law that can be used to stop an abuser straightaway.

First let’s revisit the basics of what can constitute elder abuse – keeping in mind that each state has its own set of laws addressing this matter, as does the federal government.  This lack of a common definition is part of the challenge in reporting elder abuse and identifying the numbers of elders involved.  But I think the biggest challenge remains in recognizing that elder abuse is a problem that affects our society, not just individuals taken advantage of by strangers or harmed by their loved ones because they are perceived as old, of little value to society, or as an impediment to an heir’s inheritance…

While there is an unfortunate variety of types of elder abuse – elder abuse generally includes:

Mistreatment – this is the preferred term for the American Society of Aging, which is offering a course on mistreatment as comprising abuse and neglect;

Abuse of a financial nature/exploitation – this includes the unauthorized or illegal use of or access to an elder’s financial resources that covers a range of activities such as theft, undue influence, deception or fraud, misrepresentation or coercion;

Abuse of physical nature – this includes violence of a physical nature, including slapping, hitting, restraining or confining an elder, overmedicating or giving improper medication;

Abuse of sexual nature – includes a caregiver forcing an elder to watch or participate in sexual acts;

Abuse of psychological or emotional nature – can be very subtle when employed by a manipulative or cunning family member or care provider;

Neglect of an elder can occur when a caregiver fails to actively or passively fulfill the role of caregiver (paid attendant or unpaid family member) or when an elder self-neglects.

The Adult Protection Services – APS for short – is part of the Colorado Department of Human Services and they have broken their page into four basic categories: caretaker neglect; exploitation; physical or sexual abuse; and self-neglect.  But this offers a very broad brush approach of what to report!

There are other options available in addition to simply reporting suspected mistreatment, abuse or neglect.  One of these involves getting immediate and direct protection against an abuser by means of obtaining a civil protection order.  A civil protection order proceeding is in county court and is available to persons who elders (and at risk adults, those who have developmental disabilities or some other cognitive impairment) who are victims of abuse to prevent further contact by the alleged perpetrator of the abuse.  Read more about the instructions and forms available on the Colorado State judicial website here.

The JDF 402 form for a complaint or motion for civil protection order specifically lists “abuse of the elderly or at-risk adult,” and cites Colo. Rev. Stat. §26-3.1-101(1) and (7).  That latter section of the statute, which is the definitional portion of the “protective services for at-risk adults,” provides

(7) “Mistreatment” means:

                (a) Abuse;

                (b) Caretaker neglect;

                (c) Exploitation;

                (d) An act or omission that threatens the health, safety, or welfare of an at-risk adult; or

                (e) An act or omission that exposes an at-risk adult to a situation or condition that poses an imminent risk of bodily injury to the at-risk adult.

You can see that there is astatutory provision for mistreatment that comprises abuse in our state.  The term is broad and necessarily so.  Remember that the statistics used by the National Council on Aging indicate that elders who have suffered abuse have a 300% higher risk of death as compared to those who have not been mistreated.

The take-away for this post is that there is an immediately available remedy to stop the mistreatment of elders in the form of a civil protection order.  The county courts have the forms available and magistrates or judicial officers to review the complaints or motions for such relief against an abuser respond quickly.

For elders who are suffering mistreatment at the hands of an abuser, a civil protection order can prevent further harm and help to safeguard the elder’s health.  I believe that raising awareness of available remedies to stop further abuse of elders is an important step toward realizing the goals of WEAAD.

© 2017 Barbara Cashman  www.DenverElderLaw.org

What If We Declared a War on Elder Abuse?

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Diana in Venice

What will it take to raise the public’s awareness of the prevalence of elder abuse? Here is a recent New York Times article about a woman from Washington state, a granddaughter of a victim of elder financial exploitation, who has made her mission in life to secure further legal protection for vulnerable elders.  I tip my hat to the Elder Law Profs blog for the mention of this article.  For this post, I’m focusing primarily on financial fraud and exploitation of elders.

Colorado statistics over the last several years (since the change in law concerning mandatory reporting of elder abuse and investigation by law enforcement) indicate the numbers continue to rise dramatically.  Read this Denver Post article from last fall with some of the breathtaking numbers in Colorado.  The national numbers are a bit more complicated, due in part to the variances of state laws concerning elder abuse – not all states have made it a crime to financially exploit an elder, as well as how such crimes get reported.  In Colorado, law enforcement and county adult protective services are part of the investigative framework for suspected elder abuse and some district attorneys’ offices have specialized prosecutors for such crimes.  The federal law, the Elder Justice Act – about which I have previously written, could provide an important means for developing a more systematic approach to reporting (among other important things) remains only partly funded.

A 2011 study published by MetLife Mature Market Institute estimates the financial loss by victims of elder financial crimes and exploitation exceeds $2.9 billion dollars annually, but this number remains controversial as other studies have estimated $17 billion or $36 billion.  Read about the variety of those numbers here.

How do we define fraud on elders?  That is a big part of the problem with a lack of any “standardized” way to identify such fraud and abuse so as to generate reportable numbers for particular types of fraud and abuse.  One thing that most are certain of is that the exploitation and fraud are both widely underreported –due to the shame and embarrassment factor, particularly when the perpetrator is a family member, friend or neighbor (occupying a position of trust).

Know the risk factors

Forbes recently ran an article by John Wasik that had a great summary of four of these which consider the elder’s behavior:

  • Poor Physical Health. Those who are physically compromised are unlikely to be focused on financial matters. They are often vulnerable to swindles.
  • Cognitive Impairment. When the ability to do basic things like read a banking statement or balance a checkbook declines, that’s when you have to pay attention. Those with declining math skills will not be asking important questions about new investing “opportunities.”
  • Difficulty in Activities of Daily Living. If a person has trouble feeding themselves, bathing or shopping, that’s a big set of red flags. That also means that they will have trouble managing money.
  • Social Isolation.Are they all alone? Then they won’t have the support of a network of peers, who could warn about scams.

Recognize the signs

The signs are of course numerous and varied, but keep in mind that there are many ways in which the behavior of the perpetrator of the fraud or exploitation of the elder mimics that of a perpetrator of domestic violence.

  • Use and abuse of control of the elder’s finances, such as taking, misusing, or using without the elder’s knowledge or permission their money or property;
  • Forging, forcing, or using deception, coercion or undue influence to get an elder person’s signature on a legal document – this could include signing over title to a home or other asset, or a power of attorney or a will;
  • Forging or otherwise forcing, or using deception or other inappropriate means to misappropriate funds from a pension or other retirement income, to cash an elder’s checks without permission or authorization;
  • Abusing joint signature authority on a bank account or misusing ATMs or credit cards;
  • Exploitation through a fiduciary relationship – such as an agent under a financial power of attorney acting beyond the scope of the agent’s authority, or improperly using the authority provided by a conservatorship, trust, etc.
  • Misleading an elder by providing true but misleading information that influences the elder person’s use or assignment of assets, persuading an impaired elder person to change a will or insurance policy to alter who benefits from the will or policy;
  • Promising long-term or lifelong care in exchange for money or property and not following through on the promise, overcharging for or not delivering caregiving services; and
  • Denying elders access to their money or preventing them from controlling their assets or gaining information about their assets.

Keep in mind that neither of these lists is comprehensive or exhaustive!

Report suspected abuse, exploitation or fraud

If you aren’t sure who to call and the situation doesn’t require a 911 call, use the National Center on Elder Abuse’s resource page to determine who to call.

The only way we will get a better handle on the extent and pervasiveness of elder financial abuse and exploitation is to become more familiar with it so that we know how to ask those whom we seek to protect.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

Identifying the Inner Landscape of Elderhood

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Italian Arch

Last week I went on a “spring break” trip of sorts. . .  to the Jung in Ireland seminar with the Monks of Glenstal Abbey. This year’s topic was shame and pride.  It was my third trip to Ireland for this seminar and this year’s topic resonated with me because I encounter these difficult emotions – particularly shame – in my elder law and probate practice.  Some of the issues I see, which have burgeoned into legal difficulties and which may necessitate legal proceedings – often resulting in extensive involvement by a court, might begin with these difficult emotions and play out badly in the family relationship context.

In my experience, one of the most difficult things for an elder parent to contend with is a squabble over how the elder’s health challenge or cognitive decline or other age-related malady will be managed by the adult children.  This can be a difficult place for a family as the elder parent just wants the kids to stop fighting, while the children often wage a pitched battle over who has the correct approach to helping the parent manage difficulties, as well as difficulties in identifying and upholding what each child perceives (often differently) as the best interests of a parent.  These adult children often cannot understand that each of them may be just as convinced as another sibling with an opposing point of view that they are uniquely equipped to handle the delicate issue of managing finances, helping secure appropriate housing or serving as a health care agent for their parent.

I offer these posts as a kind of alternative to an elder parent doing nothing – hoping not to cause world war III among their children.   Some parents hold to their firmly held belief that they “raised their kids right” and so naïvely want to believe that this thinking will somehow immunize them from conflict or worse, exploitation.  Many elders simply choose to wait, and simply hope for the best in the event a crisis occurs, to see how things might play out on a kind of wait and see basis.  There is an alternative to this denial!

This alternative I describe is about the kairos of elderhood. Kairos being the quality of time, the paying attention to the present and its opportunities to see what is in front of us and that which we have set before ourselves.  In our culture we focus almost exclusively on the quantitative aspect of time – chronos – as we simultaneously obsess over our longevity and puzzle over what to do with it.  In this post, I will identify the inner landscape as a determiner of what we see and perceive as the outside world – and how this might free us from some of our anxieties about aging and its deleterious effect on our human doing-ness.

What is the “inner landscape” to which I refer?  Well, the inner would refer here to the landscape which is inside us, how we see the world. I am reminded of Anais Nin’s keen observation that “we see the world not as it is but as we are.”  How can we remember this important detail in our “always on” world, where the disease of busy-ness is a chronic affliction and the pace of our lives offers few opportunities (much less encouragement) of staking out some reflective and contemplative time in our lives to consider an inner landscape?

In his book Mindsight, the psychiatrist Daniel Siegel offers an insightful description about personal transformation(s) that can lead to an integration of a self otherwise consisting of many disparate aspects.  I quote Mindsight at 238:

This drive for continuity and predictability [of a sense of self] runs head-on into our awareness of transience and uncertainty.  How we resolve the conflict between what is and what we strive for is the essence of temporal integration.

How many of us could remember by heart Blaise Pascal’s injunction “in difficult times carry something beautiful in your heart?”  If we can remember, perhaps that something beautiful is a feature of our inner landscape, made visible to us by an experience when we were outdoors in nature, in an interaction with another person or being, or perhaps by some sense of our identity relative to the “outside” world.  Our sense of permanence is illusory, and draws us again to the distinction between what we see and what we look for – the latter being where the Kairos quality of time resides.

That “something beautiful” is perhaps what Viktor Frankl describes in this quote from Man’s Search for Meaning, in which he describes the challenge of readjusting to life outside for the concentration camp survivors like himself:

What was really needed was a fundamental change in our attitude toward life. We had to learn ourselves and, furthermore, we had to teach the despairing men, that it did not really matter what we expected from life, but rather what life expected from us. We needed to stop asking about the meaning of life, and instead think of ourselves as those who were being questioned by life—daily and hourly. Our question must consist, not in talk and meditation, but in right action and in right conduct. Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual.

I am reminded also of “Against the Pollution of the I,” by another concentration camp survivor (the blind French resistance leader), Jacques Lusseyran, where he describes “seeing” (remember he lost his sight as a child) …

It is often said that seeing brings us closer to things.  Seeing certainly permits orientation, the possibility of finding our way in space.  But with what part of an object dies it acquaint us?  It establishes a relationship with the surface of things.  With the eyes we pass over furniture, trees, people.  This moving along, this gliding, is sufficient for us.  We call it cognition.  And here, I believe, lies a great danger.  The true nature of things is not revealed by their first appearance.

Against the Pollution of the I, at 54 (2006: Morning Light Press).

I will end this post with another question, akin to the kairos-chronos distinction: If we as individuals and as persons in relationship with loved ones valued our time (how we spend it) as much as we do our space (how we fill it with stuff) – could this change our relationships for the better?

© Barbara E. Cashman 2017   www.DenverElderLaw.org

Medical Aid in Dying for Dementia Patients Who Lack Capacity

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A Maelstrom?

A couple days ago a bill was introduced in the Oregon senate (S.B. 893 – you can read it here) which would permit a patient’s expressly identified healthcare agent in an advance healthcare directive, “to collect and administer prescribed medication for purpose of ending patient’s life . . . if patient ceases to be capable after having received prescription for life-ending medication.”  [Thanks Jennifer for the heads up!] This bills extends Oregon’s medical aid in dying law (the Oregon Death With Dignity Act) to allow another person (“expressly identified agent”) to get the prescription for MAID and administer it to the person who lacks the capacity to arrange for getting a prescription for MAID and self-administering it.

The definitional section of the bill, which highlights the additions to the existing Oregon law, clarifies that “expressly identified agent” is an agent under a health care power of attorney.  The additions state further:

SECTION 3. An expressly identified agent may collect medications dispensed under ORS 127.815 (1)(L)(B)(ii) and administer the medications to the patient in the manner prescribed by the attending physician if:

(1) The patient lawfully executed an advance directive in the manner provided by ORS 127.505 to 127.660;

(2) The patient’s advance directive designates the expressly identified agent as the person who is authorized to perform the actions described in this section;

(3) The patient’s advance directive includes an instruction that, if the patient ceases to be capable after medication has been prescribed pursuant to ORS 127.800 to 127.897, the expressly identified agent is authorized to collect and to administer to the patient the prescribed medication;

(4) The medication was prescribed pursuant to ORS 127.800 to 127.897; and

(5) The patient ceases to be capable.

This is a huge departure from what might be called the “status quo” of the handful of states (and last month, the District of Columbia) regarding the legality and administration of MAID.  When I presented at the CBA/CLE Advanced Elder Law Institute last week on the new Colorado End of Life Options Act, I mentioned that something like this would be inevitable.  I had no idea that this bill would be introduced the following week!

This Oregon bill basically eliminates the requirement of mental capacity for a patient to be qualified to arrange for MAID.  The Oregon statute concerning health care powers of attorney can be read here.  So many concerns come to mind I can scarcely name them.  It makes the principal’s job of selecting the correct health care agent a matter of life and death – literally.

Dementia – of a variety of types – can often last for years, so perhaps it would not be so easy for a principal with dementia to be otherwise qualified under the Oregon law (with a terminal illness and not expected to live longer than six months) to have the health care agent end the principal’s life.  I’m not certain that diminishes my concerns.

What if there is a passage of years between the naming of the health care agent and the advance of a person’s dementia?  There is often a change of relationship that occurs during this time, whether it concerns a spouse, life partner or child.  How would this be accounted for?  There is no allowances for change of circumstances here.

This prospect of putting someone out of their misery might just be what my veterinarian meant (as she was administering the drugs to end my much-loved elderly dog’s life) when she stated “I wish we could do this for people.”  But there is of course the prospect (along with many examples over the course of human history, particularly recent history) of putting another person out of our misery.  How do we discern the difference in these circumstances?  I will write more on this topic later.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

 

Springtime!

Ethical Wills and “Legacy Letters” – an Overview

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Italian Marble

It’s been a few years (3 ½)  since I’ve written on this topic, and a colleague recently asked me to speak on this at an event this fall.   The fact is, I think writing an ethical will is another way of imparting meaning into our lives – whether we are young and healthy and writing to our young children about what we hold dear and hope to carry into their future, or we are old and sick and recording more of a legacy of a life lived.   In my previous blog post, I described five different approaches to writing an ethical will: an explanation; an expectation; an affirmation; an historical document (think genealogy or heirlooms); and a statement of values.

In today’s post, I’m focusing on the last approach – a statement of values.  An ethical will in this context is essentially a document which can serve to identify those values, that “something” to live for, which has sustained the author and given meaning and texture to the tapestry of one’s life.

The ethical will or legacy letter is the big picture view of what can be encompassed in estate planning.  Keep in mind that the majority of Americans die without any estate plan in place.  Many of those folks might simply respond to a question about any need for planning with a retort “I’ll be dead, so I won’t care” – but I think there is some fear lurking behind that otherwise lackadaisical sounding statement. . .

If one chooses to engage in estate planning by executing: powers of attorney which name others to act on our behalf in the event we are unable (which may include a conversation and some direction about how money should be spent for one’s care); a living will to express our end of life health care preferences; and a will which sets forth how our estate will be distributed then  — is it really much of a stretch to go from identifying what you need to live to identify something to live for? I think not!

Here is a link to a website with some touching examples of ethical wills written by a variety of people.   What I am suggesting here is that the ethical will can help us to live life more fully – read: by preparing to die – and as preparation to face the rest of one’s life, with whatever level of fear, exhilaration or trepidation that entails.

So here are some ideas to employ for that statement of values:

Describe who you have been or who you are now in relationship to your family of origin, your family of creation and perhaps your family of choice;

  • Write about those things that you hold most dear, what you are grateful for and perhaps also the things you regret;
  • Describe those principles, rituals, or teachings, etc., which have been important to you and explain why they hold such meaning to you; and
  • Write about aspects of your life and your values that demonstrate the meaning of your life, the experience of that meaning and how you have constructed the meaning(s) over the course of your life.

These are just a few examples of how, in the creative act of putting into words one’s life story, or describing the values one holds dear, one can construct a broader meaning and see connections of the disparate or seemingly disconnected parts of a life in new ways.  The context or impetus for telling one’s story may be significant to the context of the story or perhaps not at all.  Constructing a life story – even if it is only an early part of a life – is an example of how we as human are engaged in the search for meaning.  I have always been fond of Ernest Becker’s term for our species – homo poetica or “man the meaning maker.”

This search for meaning, as well as our attempts to construct and our longing to impart meaning, can be a very useful tool for us at any age.  The ethical will as an example can help us integrate our life’s experiences and help us see the “big picture” of the meaning of our life and the lives of others as well.  It reminds me of Viktor Frankl and his logotherapy, based on “will to meaning.”   Each of us, no matter what is the ease or difficulty we face in our lives, remain free to find the meaning in our own life.  Writing an ethical will can help us construct that meaning.

© 2017 Barbara Cashman  www.DenverElderLaw.org

 

November is National Family Caregivers’ Month

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Clouds in Water

Clouds in Water

In the post, I will look at some of the challenges of caregiving for a loved one with dementia and provide some resources for this growing population.  November is also National Alzheimer’s Disease Awareness Month.  Here’s a link to the Alzheimer’s Association’s caregiver center, which has helpful information and resources.

As we approach the holiday season, it struck me that it would be a good time to revisit this topic.  The holiday season and its focus on family activities and get-togethers, can cause additional strain to family relationships made stressful due to an elder parent or loved one’s dementia.

The first important detail is that people with dementia are usually cared for by family members or friends and the most of them (about 80%) are receiving care in their homes.  Here are some numbers from the Centers for Disease Control:

Each year, 15 million Americans provide more than 17 billion hours of unpaid care for family and friends with Alzheimer’s disease and related dementias. More than six in ten (62%) caregivers were women, almost one in four (23%) were 65 years of age and older, and three in ten (30%) had children under 18 years old living with them.

Caregivers of those persons with dementia usually provide such care for a longer period than the caregivers for other diseases or conditions, and the CDC statistics on this demonstrate that

More than four in ten (43%) caregivers of people with Alzheimer’s and related dementias provide care for one to four years, and more than three in ten (32%) are caregivers for five years or more. For other types of chronic conditions that require care, more than three in ten (33%) caregivers provide care for one to four years, and almost three in ten (28%) are caregivers for five years or more.  

Caregiver stress, caregiver burnout, and for premature death for an elder spouse of a person a suffering from dementia are all very real risks here.  The demands of caregiving for a loved one with dementia subject the caregiver to greater risks of anxiety, depression and overall poorer quality of life.  So, that is the bad news. . . so what kind of resources are available to support these caregivers?

There are a range of options to consider of course, as every person or family’s situation is unique.  Perhaps all that is really need is a bit of respite care.  Sometimes just the prospect of respite care being available can make a huge difference in the emotional health of a family caregiver.  Here is a link to the Colorado Respite Coalition, which has a variety of resources available.

The vast majority of caregiving in this country is done by family members free of charge.  For many people however, volunteering these services is simply not a financial option.  Here’s a link www.disability.gov, the federal government’s website that has links, resources and helpful information for family caregivers as well as information about how family caregivers can get paid to perform such services.    And here is a link to the eldercare locator, a public service of the U.S. administration of Aging.  The Medicare.gov site also has some information that can be helpful to caregivers about what Medicare provides.  The AARP site lists these five skills that help persons care for the elders they love: observation (paying attention to changes); organization; communication; questioning and tenacity.

Several of the helpful sites above advise elders to put important legal documents in place while the elder retains capacity to do so.  When will you know whether a power of attorney is needed? Chances are good that it will be too late for an elder with dementia to execute a power of attorney once it is determined that such a document is needed!  So, I will close this post with a reminder concerning a couple bare minimum documents which are required to ease the burden of family caregiving: a health care power of attorney (with a conversation about end of life wishes with the named agent, successor agent and perhaps other family members) and a general durable (financial) power of attorney.

Both of these documents are planning documents that are designed to prevent the need for later protective proceedings in probate court  – for guardianship and/or conservatorship – in the event of an elder’s inability to manage their money or if they become incapacitated due to advancing dementia.  The American Bar Association’s “tool kit” for advance health care planning has good questions to consider in how to select your agent and list your priorities.  Remember, one of the best ways for elders to NOT be a burden on their loved ones is to plan ahead and the value of that advance legal and medical planning should not be minimized.

© Barbara E. Cashman 2016   www.DenverElderLaw.org

 

Dementia and the Right to Vote

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The Angels of Voting?

The Angels of Voting?

As our national election day nears, I thought it would be worthwhile to revisit the topic of voting rights and elders with dementia.  What kind of folks am I describing with such a broad sweep? Here I’m talking about the people with advanced dementia, some of whom reside in nursing homes or other institutionalized settings who have a court-appointed guardian acting for them as well as those elders who are living in the community and may have a diagnosis of dementia or simply suffer from cognitive deficits or decline.

So – you’re wondering whether I will reveal that folks suffering from advanced dementia who reside in say, a Colorado “memory care” facility, still retain the right to vote? Why yes, that is one of my points!  Voting law is a combination of federal and state laws.  As you may recall from studying American history, some states in the late 19th century passed “Jim Crow” laws that (among other things) imposed a poll tax, literacy test or other legal hurdle to black voters residing in those states.  It took a long time to remedy the situation, but the Voting Rights Act was signed into law by President Johnson in 1965.  Why do I mention this important legislation of the civil rights movement? Because it, along with federal case law, help inform the backdrop for the federal law of the right to vote.  But while the Voting Rights Act and federal law prohibit states from denying any citizen the right to vote on the grounds of race or gender, the Act specifically allows states to enact laws to deny the right to vote to people for two reasons: criminal conviction or mental incapacity [See 42 U.S.C. § 1973gg-6(a)(3)(B)].

It is important to note that the right to vote has been an area of struggle for many people in the disabled community.  Elder law’s capacity and incapacity analysis and some of its underlying policy often make reference to law concerning the disabled.  Voting rights of elders with dementia is one of those areas of intersection with disability law.

For resident citizens who are disabled, incapacitated (those persons for whom a court has appointed a guardian) or persons with dementia, Colorado is one of a relatively small number of states (eight) which has neither mention of mental incapacity (some terms used in other states include idiocy, insanity, non compos mentis, etc.) in our Constitution as a bar to voting nor any state statutory law prohibiting the (mentally) incapacitated from exercising their right to vote.  You can read more about assessing the capacity to vote here.

Keep in mind that there is a Colorado statute which relates to individuals confined to a mental health institution.  That statute specifies that individuals confined in a mental illness institution “shall not lose the right to vote because of the confinement.” C.R.S. 1-2-103. So, as long as that person is otherwise qualified to vote, they will be given a ballot. Additionally, Colorado law requires mental health institutions to help assist their confined residents to register to vote and obtain mail ballots.

The difficulties for elders with dementia who are Colorado voters will boil down to more practical matters concerning, for example, how to get assistance to complete a mail-in ballot.  That is a more challenging proposition as the federal law Help America Vote Act of 2002 (Pub.L. 107–252)  and Colorado laws require that voters with disabilities be able to cast their vote privately and without assistance. Each Colorado county has purchased accessible voting machines to be used in every polling place which are designed to provide the opportunity for voters with a wide range of disabilities to vote privately and independently.  These laws and other applicable law designed to prevent improper influence on voting may effectively render an incapacitated person’s right to vote meaningless because the person will not be able to exercise the right.

Perhaps this will be a new frontier of elder law: requiring cognitively accessible ballots and other election procedures.  Making these a priority could potentially provide a tangible benefit for many other voters.

© Barbara E. Cashman 2016   www.DenverElderLaw.org

 

Longevity, Dementia and Ventilator Use

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Ketring Lake at Dusk

Ketring Lake at Dusk

Longevity and dementia often go together – dementia or episodes of incapacity can be seen in some respects as the side effects of longevity.  A longer life expectancy doesn’t usually mean that it will be the quality of life that a person enjoyed – mobility, autonomy, social engagement, in the early years of retirement age.

In my practice I sometimes meet with a client who is suffering some cognitive decline.  Sometimes the type of brain disease or form of dementia can be narrowed down and other times this is more difficult.  What is vitally important for these persons is to make sure that they have advance medical directives- in the form of a health care power of attorney as well as a living will.

I should warn you that some of this post is based on a cautionary tale.  This evidenced by a recent Reuters article documenting a surge in ventilator use for nursing home residents with dementia.  The study which is the subject of the article documents the number of nursing home residents with advanced dementia – mostly women – who needed to be hospitalized and were placed on mechanical ventilators.  The use of ventilators for such hospital patients, however, did not lead to a better survival rate.  The article is instructive in noting that this is a recent and troubling development:

In 2013, among every 1,000 nursing home residents with dementia who needed to be hospitalized for some reason, 78 were hooked up to mechanical ventilators, compared to just 39 out of 1,000 in 2000, the study found.  Despite this surge, the mortality rate for these patients with mechanical ventilation remained constant at more than 80 percent.

Why is this happening? The study makes several suggestions, but a common sense answer to an important part of the question of how these patients are “ending up” with a hospital stay that includes being hooked up to a ventilator is somewhat obvious to me: these folks have not executed any health care powers of attorney or a living will.  But sadly, what might otherwise be life-prolonging intervention for many patients does not have the same effect for these elder women with advanced dementia.

One explanation of what happens when a patient has not executed a medical POA or a living will has to do with what types of services are available to these patients in the hospital setting.  The article quoted Dr. Gary Winzelberg as observing that “as long as it’s easier to access an intensive care unit bed [in a hospital] than comprehensive hospice and palliative care services in nursing homes, the trend of increasing use of mechanical ventilation for these individuals is likely to continue.”

Our health care system is not exactly “dementia friendly” when it comes to how it copes with the diminished capacity of a patient with advanced dementia who is unable to give informed consent and otherwise meaningfully participate in their health care decisions.  This is one of the reasons it is vitally important for all adults to have “the conversation” with a loved one they trust.   That conversation should ideally lead to the execution of advance medical directives – the kinds of documents that allow a person’s wishes to be upheld.

What seems theoretical and remote to so many people – is vitally important in the event the person with advanced dementia (or some other cognitively incapacitating disease or condition) wants to maintain some self-determination and the person’s family members wish to support the person’s decision to decline medical interventions like artificial nutrition and hydration and intubation (with a respirator) will become much more commonplace in the coming years as the number of people with dementia continues to grow.

So . . .  how do we “work around” these difficult challenges?

– documents relating to decision-making guidance where a person is suffering from either a terminal condition or persistent vegetative state such that they are unable to made or communicate their own decisions.

The bottom line is we must be prepared and willing to help each other through this kind of difficult time in one’s life.  The best way to do that is with just a bit of preparation in the form of a conversation and documented in a health care POA and a living will.  Now is a great time to have the conversation and remember – it should be revisited at least annually!

© 2016 Barbara Cashman  www.DenverElderLaw.org

 

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

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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