The Dementia Directive – Nuts and Bolts

An Empty Chair

This is the third and final installment of my series on the dementia specific advance medical directive. This one is about the nuts and bolts of the contents of the dementia directive. And yes, it’s on the long side. . . .

Rule 1:  Remember that simply filling out a form will not make your wishes magically known to the world and automatically enforced according to your intentions.

You have to tell people, like your health care agent, the successor agent and maybe others as well – what you want.  You can’t make them enforce the document if you are cognitively compromised or incapacitated – this is why you must be selective about whom you select to carry out your wishes. 

If you want to go through with executing the dementia directive, you must know that you need to have detailed discussions with loved ones and decision-makers(like health care agents) so that you can clearly communicate your wishes as well as answer questions about an agent’s and/or a loved one’s ability or willingness to make such difficult decisions.

Don’t pretend you can take the easy way out on this downhill run – the simple act of filling out a form will not accomplish your goals. Over the years I have talked with more than a couple adult children who found or became aware of their deceased parent’s living will after the parent passed away.  I think that people who wish to have an “aggressive” dementia directive followed must be prepared to ask that their health care agent go to court on their behalf to uphold its provisions.  Why? The states which currently allow for medical aid in dying (including Colorado) do not have provisions which would extend to patients suffering from dementia (they must be a hospice patient) nor do they allow for a health care agent to obtain life ending medication on another’s behalf. 

Question: Would an aggressive living will provision allow a health care agent’s direction that a care facility discontinue spoon feeding a person with advanced dementia be enforceable? 

Answer: It depends or . . .  I don’t know.  

The doctor-authored forms highlight the importance of giving a copy of the directive to your loved ones and your doctor, but keep in mind that your doctor is not going to be the person responsible for enforcing the provisions of your dementia directive.  That is the job of your health care agent, so this is why it is of paramount importance to choose the right person for this important job and make sure you have answered questions about how the person is to perform that job.  Keep in mind that a number of physicians I have spoken with over the years feel that only a “fresh” advanced directive is worth following and the dementia directive – due to the typical years-long cognitive decline and long period of a patient lacking decisional capacity – could make for complications with medical practice.

Rule 2: Provide just enough details, but not too many.

“Dementia” is a broad condition or disease where mental ability declines and is severe enough to interfere with an individual’s ability to perform everyday tasks, including managing finances (often evident in early to mid-stage dementia) and providing informed consent to medical treatment. Dementia includes dementia as a disease process and its related disabilities, Alzheimer’s disease, mixed dementia, Lewy body dementia, vascular dementia, frontotemporal dementia, as well as other types of dementia and can include a “behavioral” expression

This link contains Dr. Barak Gaster’s Dementia Directive form.  That form goes into quite a bit of detail about quality of life issues related to self-determination along a continuum from mild to moderate to severe dementia.  From my perspective and experience, I like the detail the directive provides but the details could also create ambiguity and potentially produce guilt on the part of family (members or caregivers) in that it provides direction to not receive medical treatment such as antibiotics.

Question: Can I include the dementia directive as an addendum to my Colorado Living Will?

Answer: Yes!

This is an option in Colorado because you can include a reference to “other directions” in the Colorado form.  You can find one here on the Kaiser website, the website from which the form was taken (the Colorado Advance Directives Consortium) is no longer operative.  Here’s one suggestion for additional instructions:

If I am conscious of my surroundings but have an advanced stage of dementia, as defined below, that will likely be fatal, and I am consistently and permanently unable to do any of the following (_____) communicate verbally or in another meaningful way, (_____) swallow food and water safely, (_____) care for myself, and (_____) recognize my family and other people, and, in my physicians’ judgment, it is very unlikely that my condition will substantially improve, I now direct that: 

a. ____ I not be fed, through the assistance of another person, or by other means. 

b. ____ I not be given fluids if I cannot swallow on my own.

c. ____ I not be given medicine other than pain-relieving drugs, which may be delivered intravenously if deemed necessary. 

Here’s the final bits…

Here’s a link to Kaiser Health Network’s article from last year about an “aggressive new advance directive” which would let people express in advance their preference that, in the event they experience dementia which progresses to late-stage (and can last for many months and sometimes years) they be allowed to refuse food. 

Note that the New York directive allows two options: (1) a refusal of all oral assisted feeding; or (2) feeding assistance focused on comfort only.  You can read more about this “New Advance Health Care Directive Developed For those Who Fear Dementia” and find a link to download the NY directive here.

Finally, there is yet another form for Washington state, which is known as “End of Life Washington’s Alzheimer’s Disease/Dementia Mental Health Advance Directive,”  which is specifically NOT an advance medical directive but is rather a “mental health advance directive.”  Notwithstanding the fact that AD and other forms of dementia (Pick’s disease, Lewy body dementia in Parkinson’s etc.) are neurodegenerative diseases are medical in nature and not “mental” or behavioral health disorders.  I find this document confusing for this reason.  How could anyone be expected to distinguish between the provisions of  two separate advance directive documents – one medical and the other mental health – when the affected person has advanced dementia?

While the Death With Dignity folks have put their support behind the Washington form, it is unlikely that such a mental health advance directive for dementia would be recognized in other states.  One of the interesting aspects of AD is its challenge to modern medicine’s boundary between neurology and psychiatry, and AD remains a neuropsychiatric disorder. It is listed in the DSM-V as a neurocognitive disorder,  If someone is but AD remains a medical illness and not a psychiatric one.  Happy planning!

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

The Few, The Brave, Those Willing to Plan for Dementia

Scottish Spring

This is the second installment of my series.

If you’re reading this post you might be one of the few people willing to talk about dementia – specifically about YOUR dementia.  You may have determined, regardless of whether you think you will suffer from some sort of dementia or significant cognitive impairment in later life, it’s a good idea to express your wishes while you can. 

Making decisions for a person with advanced dementia is difficult at best, and at its worst, making the decisions in a vacuum – without any idea what the person with dementia would have wanted – is exponentially more difficult.

Do you have strong preferences about how you wish to be treated if you suffer from dementia?

Perhaps you have been around long enough or have simply paid attention to witness the challenges and difficulties we have with dying in America, particularly with the kind of dying which appears to play out in slow-motion – which often accompanies advanced dementia.

Who will be your care partner?

Some years ago I wrote a post with a link to a “bill of rights” for dementia patients and here is a current link to a trademarked bill of rights for folks with dementia. These documents tend to be focused on dignity, maintaining a person’s “right of association” with people and places where they are valued and having a trained “care partner.” The people I have worked with who have been diagnosed with early stage dementia and who participate in research studies have usually identified a “care partner” because that is part of the preparation for the advancement of the disease.

The dementia directive’s choices: freedom from and freedom to…

These older types of dementia directive tend to be centered on holding to a person’s traditional preferences.  In civil or human rights terms, these types of statements are positive human rights and many are aspirational in nature.  But these statements also have an important place in reminding all of us of our inherent dignity, regardless of our cognitive abilities.  But many people want to take things further….

How much further? I received a call from someone whose sibling was gravely ill and in hospice care.  While he had been expected to die some days or weeks prior to the phone call, the ill sibling was hanging on by a thread while in hospice care.

The question posed to me was straightforward: can a health care agent for a dying person arrange for getting a prescription for life-ending medication for the terminally person?

The answer is “no”.  Under our End of Life Options Act, only an adult (in hospice care) who has decisional capacity can seek such a prescription.  A person with advanced dementia or someone who lacks decisional capacity cannot get aid in dying meds. The law does not allow an agent for an incapacitated person to procure such a prescription

The terminally ill sibling had a form of dementia caused by major organ failure, not Alzheimer’s or another type of dementia which has a disease process of many years and so was not able to assist the dying sibling in this way.

What exactly is an advance directive for health care?

I find this question requires a lengthy answer because “advance directive” can include a medical power of attorney, a living will, along with other documents or directives.  An advance health care directive is typically used for setting up the legal framework for someone to name another person to make health care decisions for them (a medical power of attorney) and to provide them some guidance and direction about end-of-life choices (a living will).

This dementia directive has been in the news lately and has been the subject of a couple posts in my listserve communities.  A CBA subcommittee has been formed for this topic, with the goal of providing a suitable form for clients, and yours truly is part of the subcommittee.

So, a dementia directive is a medical directive?

The answer here is a bit tricky! Why? AD is a neurological disease which is generally covered by a medical directive, but there is also AD with behavioral disturbance.  The dementia directive falls in the rift between neurology and psychiatry that was created in the last century.  For our purposes in Colorado, it appears to fall under the category of advance medical directive, but in other states such as Washington, the dementia directive is a mental health directive.

More about the nuts and bolts of the contents of the dementia directive in my next installment!

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

More about Preventing Elder Abuse With Prosocial Behaviors

Who You Callin’ Stubborn?

 

This is a follow-up post about WEAAD.  Elder abuse is a phenomenon that affects not just the victim of abuse, but threatens the fabric of our community.  Besides mandatory reporting, prosecuting perpetrators and enforcing existing laws prohibiting elder abuse and exploitation, there are prosocial behaviors which can serve as powerful and effective preventive interventions to guard against the isolation and vulnerability which often lead to elder abuse.

What Are Some Examples of Prosocial Behaviors?

The term was coined as an antonym of the more prevalent term “anti-social” behavior.  It comes in many different theoretical forms, but they all recognize that we humans are social beings and depend upon one another, notwithstanding many of our “atomistic” beliefs about who we are and how we interact with each other.  In this respect, prosocial behavior is tied to our very survival, but a functional approach is what I’m concerned about here because I’m looking at ways to foster elders remaining visible members of our community.  The basic behviors might include: demonstrating concern for others, sharing time and resources, caring for others and active empathy.

Isolation as a Precursor to Elder Abuse, Inclusion as the Antidote

It may not occur to many of us that someone’s ability to live independently in the home – a/k/a aging in place, can have disadvantages and drawbacks.  From my experience, I see plenty – but don’t get me wrong, I am definitely not against aging in place!  I am concerned that sometimes it gets glamorized in unhelpful ways.  I have seen some elders dig in their heels at the suggestion by loved ones that they bring in some help to perform household chores or share in meal preparation.  In its worst expression, it becomes a vow by the elder that they will only be removed from their home “on a gurney.”

How Our Focus on a Rights-Based Approach to Elderhood Often Overlooks the Prosocial Activities of Inclusion and Participation

Most elder abuse occurs in the home.  Many elders face abuse and abusive situations in skilled nursing facilities or other facilities and these tend to be the attention grabbers.  I think of this fact when I read the ruling on appeal issued by the U.S. Tenth Circuit Court of Appeals last May, which upheld a jury verdict of $1.21 million in damages against an operator of an Oklahoma City, Oklahoma nursing home for abuse of one of its residents by nursing home employees. Keep in mind that nursing home administrators have many resources to assist them in training and supervising staff, one of these tools is known as TPAAN and here’s more information about it.

Our Collective Fear of Dementia Often Means We Shun People Affected by Dementia

When we’re talking about elders aging in place, we have to consider folks with dementia.  People with dementia have trouble thinking and sometimes their loved ones in particular (most of whom have no special training in communicating with people with dementia) or other community members have a difficult time not correcting those errors in thinking, cognition or memory impairment.  But what if we looked at those “errors” not as errors but simply as a different way of being in the world?  How could we get through to see and listen to someone in that different world the person with dementia inhabits?  Remember, there is still much opportunity for communication, which can and does still happen.  The more challenging question is how we can facilitate it.  I think of music and its use in Alive Inside and I recently learned from a Canadian friend of the Butterfly Model, a new version of person-centered care that recognizes that

for people experiencing dementia, feelings matter most, that emotional intelligence is the core competency and that “people living with a dementia can thrive well in a nurturing environment where those living and working together know how to “be” person centered together”

We Can Still Be in Relation With A Person Whom We Struggle to Understand

This person-centered care is a relational way of engaging with a person affected by dementia. It also reminds me of Naomi Feil’s validation therapy, which is also relational.  So, this leads me to the inevitable question, can people engage in this type of relational work without specific training and/or outside the context of institutionalized care?  I will write more about this soon….

©2018 Barbara E. Cashman, www.DenverElderLaw.org

A Brief Look at the Thinking Behind Guardianship Reform

Help with wings

Those of us who practice in the field of conservatorships and guardianships (this is Colorado terminology; their precise titles vary from state to state) are now struggling to make sense of the many proposed changes put forward by critics.  I am primarily concerned with the proposed legislation from the Uniform Law Commissioners known as the Uniform Guardianship, Conservatorship and Other Protective Arrangements Act (UGCOPAA).  This proposed legislation has been hailed as a modern update to guardianship and conservatorship law.  Where Colorado (in contrast to many other states) has long established uniform guardianship and conservatorship legislations, along with periodic updates, the new uniform legislation is basically “Guardianship 2.0” in that it represents a major and systematic update and overhaul.  The American Bar Association has a good overview of the proposed uniform legislation here.

The Challenges of Reforming Different Systems Among the States

Nationwide, there are many groups and individuals behind efforts to reform guardianship (as the term will be used collectively to refer to both types of legal proceedings).  The different groups have different criticisms and there is no shortage of horror stories about how these “protective proceedings” have gone wrong for many people.  While many people would like to have more uniformity and oversight imposed on the state systems of probate courts, the federal government is neither equipped nor inclined to act as overseer here.  The lack of resources for the much-hailed Elder Justice Act is an example of this unfunded mandate.

There Are At Least Two Different Populations of Vulnerable Persons

Guardianship reform efforts are aimed to assist those identified as the most vulnerable segments of our population: the disabled community (with organizations like The Arc and legal protections like the ADA), along with elder adults with declining cognitive capacity.  This latter population will continue to grow.  The numbers of elders with severe cognitive impairment grows with the numbers of elders, and the Alzheimer’s Association has dubbed my generation of baby boomers “generation Alzheimer’s.”    To my mind, there are two very different “camps” of persons in this proposed legislation.  Suffice it to say that the two segments are generally included as a group together because of the overlapping needs for respect for their rights to dignity and self-determination.

My central concern with the proposed legislation is the point where the two groups interests and needs for protection diverge.  Keep in mind they are very different populations.  I’m using a broad brush here, but we’re talking about needs and protections of a developmentally disabled adult who may be relatively high functioning in some aspects of living and need substantial assistance in others.  They may be able to live independently with assistance.  Contrast this with the large numbers of elder adults who, as a direct result of our unprecedented longevity, have amassed resources, established relationships and lived their own lives prior to succumbing to dementia.  When does one lose the ability to manage one’s own affairs?  That simple question has no simple or easy answer!

Among those who call for guardianship reform in the context of elders, there are a couple groups, those associated with celebrity children of fathers who suffered from Alzheimer’s Disease.  These daughters were not allowed sufficient visitation with their fathers due to restraints placed on such visits by their stepmothers, specifically Kasem Cares and the Catherine Falk Organization, who have zeroed in on a right to association as part of guardianship reform.

The Guardianship Reform Movement Is a Diverse Group with Many Diverse Interests Represented

Suffice it to say that some of the diverse interests conflict with each other.  Many of the calls for guardianship reform are in response to the inherent failings of a particular state’s system of oversight.  Nevada’s system in Clark County was the subject of Rachel Aviv’s New Yorker article “The Takeover,” and it documented in horrifying detail how elders were systematically stripped of their civil rights as well as their property, with hardly a nod in the court system to any due process rights.

That reform is needed is not the issue, but the where, how, why and what of that reform should be examined closely, instead of trying to overlay a “fix” for a problem which may not exist or by creating new problems by reforming a system in its entirely when there were parts of it that were working fairly well.  If you take a poll of attorneys in this field, you would be hard pressed to find people who don’t have concerns about how our system works and most of us could list an array of its shortcomings.  Does this mean the system is broken? I don’t think so. Does it need improvement? Yes.  Our legal system is a functioning part of our government that must respond to the diverse array of interests, pressures and fiscal priorities and realities.

What I find disturbing about all of this is the clamor to “fix” a broken “system” – as if all we needed to do was pass some new legislation that would magically transform the adult protective proceedings system into a streamlined, dignity-honoring and civil rights protecting regime. In our obsession to fix a problem and then move on to the next thing, we overlook the opportunity for thoughtful change and typically neglect the big picture of looking at the entire system – both the working and the failing parts, with an eye to improving particular outcomes.  This takes longer obviously, but avoids the throwing the baby out with the bathwater approach.

Next time, I will look more deeply into the criticisms levelled at attorneys and fiduciaries working in the field of conservatorships and guardianships.

© 2018 Barbara Cashman  www.DenverElderLaw.org

Giving Tuesday – Consider Giving Some Time to an Isolated Elder

Make the Connection!

Today is Colorado Gives Day!

Otherwise known as Giving Tuesday, the day designed to spotlight opportunities for people to give to charitable causes.  The day seems to have come into existence when two organizations, the 92nd Street Y in New York City and the United Nations Foundation came together in October 2012, with the intention to set aside a day that was all about celebrating the generosity of giving, a great American tradition.   According to USA Today, Giving Tuesday raised $180 million in online donations.  That is nothing to sneeze at!

Donating Locally is Easy!

Here in Colorado, we’ve got our own website with over 2,000 nonprofits listed to receive donor’s contributions.  You can visit the website and find a good place for your donation to support if you’re at a loss about which type of charity you’d like to benefit.

Instead of highlighting the worthy nonprofits which serve low-income elders, I’m looking at Colorado Gives Day with a different goal in mind – to raise awareness about reaching out to socially isolated elders in our communities.  I’m not just talking about making contact with folks who reside in senior housing residences, assisted living or skilled nursing facilities, but also to those elders who are “gaining in place” in their own homes and face considerable social isolation based on a number of factors.

What About Donating Your Time?

One way to ease an isolated elder’s isolation and also solidify our own connections with community members we might never have otherwise met – is to volunteer our time – even if for a few short minutes or hours.

You can easily volunteer your time locally through a nonprofit like Metro Volunteers, who will match your skills with a nonprofit looking for someone with your skills.  Whether it is a board of directors position you seek, a mentoring opportunity with a youth, or serving food to people at a shelter – Metro Volunteers can assist.

But the focus of today’s post is about giving time to an elder who is isolated.

There are numerous article and research into the effects of loneliness on the elderly population.  One recent study concluded that loneliness is a significant public health concern among elders.  In addition to easing a potential source of suffering, the identification and targeting of interventions for lonely elders may significantly decrease physician visits and health care costs.

Decreasing an Elder’s Sense of Isolation Helps Prevent Elder Abuse

I’m reposting a link from an elder abuse prevention listserve I am part of, originally posted this morning by the Social Media Manager of the NYC Elder Abuse Center at Weill Cornell Medical College.  The holidays are difficult times for many of us.  She writes “During the holiday season, family gatherings are more commonplace. Older adults feel social isolation more acutely, yet crave the connection. This holiday season NYCEAC is asking our social media followers to commit to have a conversation with an older adult in their life during the month of December. We know everyone benefits from a connection, and improves the health of the community at large, too.” We’re calling our campaign Countering Isolation, or #CounteringIsolation.

Remember that this type of giving of our time to another who doesn’t have the physical, psychological, financial or emotional wherewithal to engage in the broader community is a good thing with many positive benefits for us,  Happy Giving Tuesday!

© Barbara E. Cashman 2017   www.DenverElderLaw.org

When and How Should Someone Report Suspected Elder Financial Abuse or Exploitation?

Safety in Numbers

My posts about reporting elder abuse remain my most popular among readers and since it’s been a while since I’ve written on the topic, I thought it was time! I get regular calls from people about this question, often from adult children who are concerned about what is going on with a parent.  Plus, I listened to a webinar put on by the ABA last week about recognizing and preventing these scams.  Today I’m focusing on federal programs and resources.  Here’s a link to the US Department of Justice (DOJ) Elder Justice Initiative to get started.

Among the presenters at the webinar were a representative from the Consumer Financial Protection Bureau (CFPB) and a prosecutor from the US DOJ Civil Division’s Consumer Protection Branch.  I mention these two federal resources because most of us tend to focus only on local or state law enforcement when it comes to reporting suspected financial abuse or exploitation of an elders.  One other recent detail popped up on a listserve recently, reporting a scam concerning what was represented to be an “escrow company” to the victim and who told her they were assisting in the sale of her time share in Mexico.  Apparently tens of thousands of dollars were cumulatively wired to the scammers, for the purported purpose of covering taxes and transaction fees.  I searched online and found several posts about these types of scams that sound like perfectly legitimate businesses.  One of these scammers was using the name of a legitimate Colorado business.  Couple this with a scammer’s ability to “spoof” a phone number on the recipient’s caller ID, and it’s a pretty dangerously convincing mix!

The scammers are as familiar as the rest of us with the adage “if it’s too good to be true it probably is,” but some of these scams persist, coming in many new and different forms.  The more troubling scam scenario however is the much more legitimate sounding scam, which doesn’t purport to be a “sure thing,” but instead rely on a common human tendency toward “in for a penny, in for a pound” behavior, or what economists refer to as sunk cost fallacy and psychologists call commitment bias.

Many of these scenarios involve mail fraud and wire transfers.  Read a recent press release from the DOJ about actions concerning mail schemes targeting by foreign nationals.  Last March, the CFPB issued an advisory and a report with recommendations for best practices for banks and credit unions on “how to prevent, recognize, report, and respond to financial exploitation of older Americans. Financial exploitation, the illegal or improper use of a person’s funds, property or assets, is the most common form of elder abuse and costs seniors billions of dollars per year.”  The Advisory, which contains recommendations concerning the development of internal controls for the protection against and reporting of exploitation, training of staff to prevent , detect and respond to elder financial exploitation and using appropriate technology for the detection and reporting to local, state and federal authorities, is available here.  The executive summary of the CFPB’s report begins with an important message:

Elder financial exploitation has been called the crime of the 21st century and deploying effective interventions has never been more important. Older people are attractive targets because they often have assets and regular income. These consumers may be especially vulnerable due isolation, cognitive decline, physical disability, health problems, or bereavement. Elder financial exploitation robs victims of their resources, dignity and quality of life—and they may never recover from it.

You can read more of the report here.

There are many ways that scammers defraud elders and some of these include Medicare, Medicaid and health insurance fraud (which is akin to a form of identity theft), IRS and tax scams, mail fraud and internet scams involving “sweethearts” and online dating, sweepstakes and lottery “winnings” and tech support scam.  The Justice Department also has a helpful roadmap identifying what type of scam and which federal agency to which it can be reported.

One valuable thing for people to consider in reporting an incident of suspected elder financial abuse and exploitation is this: a single victim may not have suffered a devastatingly huge loss, relative to their life savings perhaps, and it may even have been a relatively small loss, but if it is multiplied among a range of victims nationwide, what the scammers take can amount to millions of dollars.  This is why reporting remains critically important.  We are charting new ground here as many facts and figures about the incidence and forms of elder financial abuse and exploitation remain unknown due to underreporting.

That’s all for now.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

Solstice and Death Denial

Night Lights

Solstice is an astronomical event, a phenomenon occurring biannually which marks two extremes: the shortest day of the year (today) and the longest day of the year. Its meaning derives from the Latin: sol for sun of course and stice meaning standing still in that the sun stops before it reverses its direction.  All cultures in the world have noted or somehow marked the occurrence of the solstice, but each has historically come away with different forms of its observance.

I’m writing about solstice today for a couple reasons I suppose. One is its reminder of constant change in our natural world.  There is always some movement in this life – a lengthening and a shortening, a moving toward and a moving away from, but it often seems that many of us would rather insist on holding onto something a bit more concrete, that we can touch, hold or identify as familiar.  Most of us do not welcome change with open arms because it represent the unknown, about which we can never be too certain.

In the coming months I will be writing more about a favorite theme of mine – the denial of death.  This denial of death which we endorse and glorify in our culture, often unwittingly, is essentially a denial of life.  We can’t have one without the other.  So how do we manage this uncertainty which often presents as anxiety – either on a personal or collective level?  Many of us will simply choose to react, to prepare for what we think is inevitable in our minds – as if we can predict the future.  Of course many of us can predict the future in that the narrowness of our ability to see the world in front of us is such that our field of vision is limited to only those things which we want to see.

This closing up, this denial of what we don’t want to accept, what we are not willing to see and what we have told ourselves we would never accept is in many ways like a solstice.  Our world shrinks down to what is manageable under the circumstances, the mystery and uncertainty of what we can’t control is simply too much for many of us.  But what if the unknown, the uncertainty is our best teacher?  How might we respond to it? I think of a favorite quote of David Steindl-Rast:

The root of joy is gratefulness…It is not joy that makes us grateful;

it is gratitude that makes us joyful.

You can watch Brother David’s Ted Talk here.

I have written about gratitude and gratefulness a number of times.  In our culture, we tend to be focused almost exclusively on the personal losses faced in elderhood: the loss of autonomy as a result of physical, mental or emotional difficulties or challenges; the loss of purpose in that many of us no longer feel we are contributing members of a community; and the loss of engagement in life. I believe that successful elderhood is possible and desirable, amidst all the difficulties, pessimism and “conventional wisdom” (or insanity, depending on your point of view) – perhaps even as a result of all these challenges.  This is what I will be writing more about in 2017.  I am grateful for this opportunity to write about this, for each of you that reads a post of mine and particularly to those who comment or send me an email about a post.  Happy solstice day today and may your days be lengthened in joy and deepened in purpose.

© Barbara E. Cashman 2016   www.DenverElderLaw.org

Dementia and the Growing Prevalence of Elder Abuse

Not Winter Flowers

Not Winter Flowers

I was reading a list serve post yesterday that told of the member’s father (a retired attorney in another state) who got a call from a scammer claiming to be an attorney working on behalf of a grandchild in trouble with the law.  The post was essentially a “heads-up” kind of post to a new mutation on the old long lost grandchild scam.  You can read an article about how that scam works from the perspective of the scammer here.  Sadly, some other members of the list serve community reported a couple instances of this one when it worked successfully, relieving the loving grandparent of a sum of money.  One such scam was traced to a caller in the Ukraine!  If it sounds like it might never happen to an elder you know, think again – these folks are quite sophisticated.

This is an introduction to some news that I recently read about our neighbors in the UK: Dementia is the leading cause of death in England and Wales.  Read the BBC News article here.

This means that as other health challenges are effectively managed throughout one’s old age, dementia remains in the background so to speak, a silent killer.  It’s no surprise that the bulk of these dementia deaths were of women, as women tend to have a longer life span than men.  What I thought was particularly interesting was this figure: Dementia, including Alzheimer’s disease, accounted for 15.2% of all female deaths, up from 13.4% in 2014.  Is this due to more effective means of diagnosing Alzheimer’s (which ordinarily must be done with a brain autopsy or at least a slice of that organ’s tissue to identify those amyloid plaques)? Or is it due to an actual rise in the number of persons afflicted with the disease, as demonstrated in the graph in the article which shows it steadily overtaking heart disease since 2012?

Dementia is a leading side effect if you will – of our longevity.  This news doesn’t just impact our health and longevity of course, factors mightily in the need for further raising the awareness of elder abuse.  Folks with dementia are likely to be victims of some form of elder abuse, neglect or exploitation.   The burden on the rest of us to be able to detect elder abuse is crucial to our collective well-being.  The community plays a foremost role in the detection of elder abuse in its many forms and so community members – through meals on wheels volunteer, peers at a community center or members of a faith community, can play a major part in this effort.  I don’t want to minimize the importance of prevention, but I think our awareness needs to focus first on the detection of the myriad forms of elder abuse.

My introduction to this post was about a scam by someone posing as a person assisting a grandchild – but most of the reported cases do not involve “stranger danger” as it is called in the child welfare context.  Sadly, when the abuser or exploiter is an adult child or other family member (as the vast majority of such cases appear to be) the elder is faced with a difficult choice indeed because their ability to be maintained in their own home is severely compromised.  We have some battered women’s shelters, but no emergency housing for abused elders.   We simply must be able to move forward with the development of services for at risk elders and design some kind of basic architecture of supportive services.  Right now, everything is dependent on where an elder lives.   How many community resources there are largely depends on local and state funding because whether the detection resources, such as law enforcement and adult protection services, are adequately informed to detect elder abuse – makes a huge difference.

Here’s a link to a very informative program from Nashville Public Television.  Especially as we tout “aging in place” as the best kind of living arrangements for most elders, we must face what that can mean for them and the risks it can pose.  We must respond to this call for being present to our elder community members!  I will write more about what looks to most of us to be a challenging landscape of familial relations and unfamiliar ethical territory.

© Barbara E. Cashman 2016   www.DenverElderLaw.org

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

Springtime in Assisi

At a former client’s request, I am writing a bit more about the ballot initiative Proposition 106 on the November ballot for Coloradoans.  Read the text of the initiative here.  It was formulated as Prop 106 after two unsuccessful attempts to get a version of the Oregon statute through the Colorado legislature.  After the bill died in the spring of 2016, supporters made good on their threat to take it to the voters in a ballot initiative.

Why do I bring up “deathbed” ethics here? Because I think there is an important and a vital distinction between allowing for an easier death, a good death – which is the historical meaning of euthanasia, and the causing of death by hastening it with a life-ending prescription.  In our post-modern America, we have become estranged from death and dying.  Dying has come to be seen, as life has for so many elders, as the management of a medical problem.  This is recently changing as more people are able to die at home and with the wider familiarization with hospice and palliative care.  Most of us care about the quality of life and so, consequently, about the quality of a death or a dying process.  Throughout history, we humans have always tried to control the way in which we die.  But is dying an accomplishment or part of a life process?  How do we master death?  I am unsure of the answers to these two questions, but I can tell you that Prop 106 has one answer, to this question – that is to take one’s own life with life-ending medication, which proponents have historically termed “death with dignity.”

I find offensive the idea that the only “death with dignity” is by one’s own hand and within a time frame selected by the one choosing to end their life.  I think this is no mastery of death at all, but represents an even deeper form of denial, an escalation if you will, of the denial of our own mortality.  It’s as if we say to ourselves “I’ll show you death – I will choose you and not allow you to choose me!”  This reminds me of a line from a favorite children’s book – Arnold Lobel’s Frog and Toad Together when the two friends (observing a hawk overhead) scream together “we are not afraid!”

We live in a death-denying culture and I see this Prop 106 as simply another means of denying death, but this step requires the endorsement of others on two levels: first, in the form of a change in the law to allow for assisted suicide or physician assisted death; and second, in the form of the fundamental change in the way doctors treat patients.

Americans love to discuss and debate the meaning of our rights and how our rights are best protected.  We tend to focus on individual rights in particular and sometimes we tend to forget that for each right there must me some relationship for its exercise, some context for it to be meaningful and substantive.  What if our focus on this asserted individual “right” is more akin to a coping mechanism (maybe a dissociative pattern?) in the face of suffering?  In this sense, Prop 106 represents a solution to a different problem, a philosophical problem of human existence and not the one described in the initiative.

  1. The Right to Die

The “right to die” is a misnomer for what this ballot initiative –– is about.  Suicide is no longer a crime in any U.S. state.  People already have a right to die as such (without another’s assistance) and people take their own lives every day. The right which the “end of Life Options” initiative concerns is the ability for a class of terminally ill persons to be able to get a prescription from their doctor (without criminal penalty being imposed on the medical provider) for life-ending drugs. Prop 106 refers to these as “medical aid-in-dying medication”, but I have difficulty calling them medication, because that would be for treatment, but this initiative includes the ending of a patient’s life as medical treatment.  Is this a big deal? Yes, I think so!   Colorado law currently provides that a person aiding another’s suicide is felony manslaughter (Colo. Rev. Stat.  18-3-104(B)).

This “right to die” which is Prop 106, is a right, the exercise of which, is premised upon the necessary involvement of another person (and institution) for its fulfillment.  If you are interested in reading further about this, you can take a look at the U.S. Supreme Court’s 1997 decision in Washington v. Glucksberg, in which it determined that the asserted liberty interest (under the Due Process Clause) had no place in our legal, medical or other traditions and to decide otherwise, would force the Court to “reverse centuries of legal doctrine and practice, and strike down the considered policy choice of almost every state.

  1. The State’s Stamp of Approval on the Medical Profession’s Ability to Prescribe Death-Causing Medications to Patients without Criminal Penalty

Whether we call this active euthanasia which is described in Prop 106 as a “right to die,” or a self-inflicted “mercy killing,” Prop 106 would change the most personal act of whether to end’s one’s own life into a a matter of policy, by forcing endorsement of voters and the medical community to institute a fundamental and historical change in the doctor-patient relationship.

Some patients would say that their right to receive life-ending medication should trump this historical relationship, but I find it incredibly inconsistent that, only since January 2016, Medicare has begun paying its doctors to have an end of life conversation with patients.  This was a big step and an important recognition from a system that has fully supported viewing people as medical problems and not as people!  Additionally, CMS (the Centers for Medicare & Medicaid Services) recently issued has new regulations that enshrine “person centered care” for residents of long-term care facilities.  I think this forcing of a doctor’s hand to assist our own in choosing to take our own life is simply impatience with the problem of living – and our difficulties discerning the difference between what we recognize as living and as dying are the problem. Prop 106 is not the solution to either of those challenges.

I will continue this discussion next week when I delve further into the stated goals of some proponents and what this law allow and its implications for frail elders. . . .

© 2016 Barbara Cashman  www.DenverElderLaw.org

Successful Elderhood 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