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 Perils of Elderhood: Retirement Insecurity

Florentine graffiti… what me worry?

The road to elderhood, a successful elderhood at least – relies upon a foundation built on experience.  The experiences of this “newness” to one’s old age or elderhood, implies that in the second half of one’s life we can utilize our experiences of trauma, grief and pain which we all experience in the first half of life and translate them into our own personal form of resilience.  Well, that might be a goal at least.  How many of us get evaluated or graded upon these kinds of things? Hmmm, not many – particularly when many of us who have reached that “certain age” as the French call it, care less about what others might think of us. Retirement insecurity can take on many characteristics including depression due to a lack of a purpose to get out of bed or a place to go, not knowing where we “fit in” in the new world of retirement, determining where we want to live if our grandchildren are far away, and so on.

Change Typically Makes Us Feel Insecure

So, can this story of one’s elderhood be a “new” story for us?  I think the answer is a resounding “yes” – this notwithstanding my lack of reference to a single “self-help” book! Acknowledging the hurts and harms we sustained in the past and being with them to the extent that we neither deny their existence nor do we fixate on trying to heal those hurts.  Maturity here calls forth both a degree of necessary resilience as well as a certain perspective taking which is not “all about us.”  The funny thing about time and our relationship to it is that we are always able to remake and retool that relationship.  I think about the oft-used saying that it is “never too late to have a happy childhood.”

We Can Plan For Some Semblance of Security and Adjust Our Expectations

I will use the quote by Antoine de Saint-Exupery (author of the beloved story The Little Prince) on this topic:

The time for action is now. It’s never too late to do something.

The number of boomers inching into retirement continues to rise, this notwithstanding the changes and insecurity that retirement brings.  I have heard many people say that they can’t afford to retire and they will just keep working. . . but this is often realistic because it ignores some of the challenges that come with aging and assumes that there will be a job or some form of suitable employment.  Here’s a recent Washington Post article about financial insecurity in retirement.

As the U.S. government Accountability Office recently observed in a report – financial insecurity is trending.  I’m not quite sure what that means – but I don’t think it’s a good thing!  Section four of the GAO’s 173-page report examines the need to re-evaluate the nation’s approach to financing retirement.  It notes:

Over the past 40 years, the nation has sought to address the issues facing the U.S. retirement system in a piecemeal fashion. This approach may not be able to effectively address the interrelated nature of the challenges facing the system today. Fundamental economic changes have occurred, as well as the shift from DB to DC plans, with important consequences for the system. Further, it has been nearly 40 years since a federal commission has conducted a comprehensive evaluation of the nation’s approach to financing retirement. A panel of retirement experts convened by GAO in November 2016 agreed that there is a need for a new comprehensive evaluation. The experiences of other countries can also provide useful insights for ways to improve the system.

There are numerous articles about the failed IRA and 401(k) experiments as a replacement for defined benefit (DB) plans, a/k/a pensions, but I will steer clear of those.  These plans have encouraged Americans to save for their retirement, but about half of Americans aged 55 or older have NO retirement savings in an IRA or 401(k).  But here is a link to a Forbes article which disputes the dire findings of the GAO report for its failure to account for valuable pensions.

It’s Not Too Late to Plan for Or Scrutinize Our Retirement Budget Expectations

So, retirement saving and planning is both an individual and a collective phenomenon, that’s nothing new – but what about those factors affecting the sufficiency of our retirement income based on our savings, pension and social security income?  How much money will we need in retirement? The answer is, of course – it depends!

The single biggest expense that faces Americans in retirement is health care and it is under attack once again, this time in the form of tax legislation which the Congress is still working on, but the handwriting was on the wall for Medicare when the 2018 budget was recently unveiled.   We still don’t have any details about the tax package.

How Many Elders Will Be Able to Afford Medicare Coverage in the Coming Years?

Here is a 10/27/17 article from the Kaiser Family Foundation which examines how the loss of the ACA’s Cost-Sharing Payments will affect insurance premiums in 2018.  While the costs of health care in retirement remain largely uncertain and unknown for most of us, an article from last summer estimated that health care will cost couples $275,000 in retirement.  Wow!  What happens to those elders who can’t afford the Medicare premiums, co-pays and deductibles?

It is extremely difficult to anticipate how much coverage will be left in Medicare as well as how much it will cost in premiums. Here is a link to the 10/26/17 AARP’s  “Premium Support is the Wrong Direction for Medicare: Highlights from a New Research Report.”  The Urban Institute’s 10/26/17 Report, on which the criticisms of restructuring Medicare premium support is based, is available here.  The conclusions include several areas of concern around the effects of premium supports, which they conclude would drive up premiums, making better plans much less affordable, along with the prospect that in some areas, private plans may no longer be available.    These effects would not lead to any increase in choice, but would lead to homelessness and hardship among elders, as one source reported only a few days ago.

Perhaps elders still have some voice in stating preferences about how they will be affected by changes to Medicare. . . .

© 2017 Barbara Cashman  www.DenverElderLaw.org

The Dreaded “O” Word and Aging Into Wisdom

Old

 

I recently attended an educational lunch program put on by a financial advisor at a restaurant downtown.  It was geared to attorneys and their retirement planning needs. Most of us in attendance were “old enough” to be planning for retirement already and we had a number of questions answered.  A latecomer to the program arrived after we had finished our lunch.  He proceeded to ask our host a question about a “hypothetical 75 year old” but I suspected this colleague’s age to be well in excess of 80 years.  What really struck me however, was his use of the expression “O word” as if to acknowledge some common implied cultural unwillingness to use the term “old” as if it were a pejorative term.  I was both puzzled and troubled by this use of the term which I had never heard before, let alone from the mouth of an octogenarian!

So maybe there’s more than a few of us who simply refuse to accept this aging thing that we do, but I insist that there is a bright future for wisdom in elderhood. . . Here’s a link to a New York Times article  from 2014 about the science (from a psychological perspective) of “older and wiser” and  a short article from last month in Psychology Today entitled “Are Older People Wiser?”

Wisdom is one of the very few positive stereotypes of elderhood, but it’s of course not necessarily true.  A passive aging focused on the denial of age and eventual death does not lead to a ripeness of wisdom in one’s elder years. The jury is still out on this “older and wiser” issue, but while elders’ brains generally slow down, an elder’s experience and knowledge can make up for the shortcomings in processing speed and distractibility.  But getting to elderhood requires one to accept and even embrace our aging, learn from experience and to grow one’s knowledge along the way.  If we’re busily engaged with denying our aging, resenting that we’re “not who we used to be,” then that wisdom piece will remain elusive because we are failing to come to terms with a most basic premise of this life: the length of a life is uncertain and all we truly have is the present.

So, what is wisdom?  I liked these two definitions found at the Collins dictionary:

Wisdom is the ability to use your experience and knowledge in order to make sensible decisions or judgments; and in American

the quality of being wise; power of judging rightly and following the soundest course of action, based on knowledge, experience, understanding, etc.; good judgment; sagacity

There is also the wisdom tradition, which is synonymous with Perennialism, defined in Wikipedia as “the idea that there is a perennial or mystic inner core to all religious or spiritual traditions, without the trappings, doctrinal literalism, sectarianism, and power structures that are associated with institutionalized religion.”

So I turn to a favorite classic of literature here, Aldous Huxley’s The Perennial Philosophy, finding particularly relevant his quote of Francois Fenelon (at 257 of the Harper Perennial Modern Classics edition) to the subject of wisdom as an outgrowth of embracing the aging process as part of our experience of our selves:

Faults will turn to good, provided we use then to our own humiliation, without slackening in the effort to correct ourselves.  Discouragement serves no possible purpose; it is simply the despair of wounded self-love.  The real way of profiting by the humiliation of one’s own faults is to face them in their true hideousness, without ceasing to hope in God, while hoping nothing from self.

If we can avoid becoming overwhelmed with the discouragement of old age and its changes to us and in us, perhaps we can exercise that sagacity referred to above.  There a number of resources in the wisdom of aging category, including the late Reb Zalman Schachter-Shalomi’s book From Age-ing to Sage-ing which led to the founding of the Sage-ing International organization, which hosts workshops, webinars, conferences and other forums for fostering “spiritual eldering.”  Their website states that moving from age-ing to sage-ing involves the following:

  1. Developing a willingness to deal with life completion and overcoming the desire to stay in denial of aging.
  2. Coming to terms with our mortality.
  3. Acquiring the skills for working on the inside by practicing journaling, meditation, imaginal exercises, and spiritual intimacy by creating safe and sacred space in dyads.
  4. Paying attention to our body, feelings, mind, and spirit, being guided by them and maintaining them in the right tone, mood, and attitude.
  5. Giving  a real hearing to the inner voices – allowing all the minorities within the whole person their witness.
  6. Beginning to do life repair:
  • in health
  • in practical matters with wills and testaments
  • in relationships and between generations
  • by reaching into the past and offering release and healing
  • through forgiveness work with release from vindictiveness
  • by finding the pearls in the anxious memories
  • 7. Doing the philosophical homework by raising questions about the purpose and the meaning of our lives.
  • 8. Serving as elders to others as guides, mentors, and agent of healing and reconciliation on behalf of the planet, the nation, and the family by being wisdom keepers.
  • 9. Preparing for a serene death and afterlife, furnishing our solitude with God.
  • 10. Doing this nobly in connectedness with the inner, actualized self,  already realized, individuated, and complete.This is a formidable list, but fortunately there is assistance in the Sage-ing community for these efforts.  There are also other excellent resources which may involve a bit less introspection and life review.Jane Barton (of Cardinal Life LLC), an excellent local speaker with whom I am acquainted, has a program she has entitled “The Journey of Aging.”  Part of her programming covers the denial of death and the aging process and how that unwillingness to engage with our mortality adversely impacts our present abilities to consciously and deliberately plan for our future.

© 2017 Barbara Cashman  www.DenverElderLaw.org

The Eclipse and the End of Life As We Know It

True Illusion

The eclipse that is set to occur on Monday, August 21, 2017 is a big deal. I have several friends who are traveling to get a better view of this event.  One couple I know is going to Fort Laramie, Wyoming and other friends to McCook, Nebraska.  Here’s a handy map that shows the strip of total eclipse. Based on my research, the last coast to coast eclipse in the US was ninety-nine years ago.  I remember seeing a partial eclipse in Denver almost thirty years ago.  It was pretty cool.  So, if you want to “prepare” for this eclipse, go to this link on the NASA website.  After all, it’s set to last for nearly three hours, reaching its maximum at 11:47 a.m. in my neck of the woods.

So what is it about the eclipse that would cause me to couple it with. . . the end of life?!  Well, here goes.

The word eclipse comes from the Greek ekleipsis, which means abandonment, cessation, failing, omission or flaw.

But remember that the eclipse merely obscures the sun from our sight – the moon appearing before the sun to block it does not extinguish the sun, but from our eyesight-based superficial understanding of what we think we see. . . . well, what’s the difference?

It’s a matter of vision, not eyesight.

Perhaps we eclipse-seekers are simply in search of awe, what some of our forebears would call miracles. Where should we search – in the familiar places or the unfamiliar, even uncomfortable ones? That’s hard to say. Few of us look for that awe in the mundane and everyday, but that is almost always where it seems to be found, discovered, seen.

This awe can cause a cognitive shift in our awareness, as in the “overview effect.” The term was first coined by Frank White in his 1987 book The Overview Effect — Space Exploration and Human Evolution and is described in this Wikipedia entry as

the experience of seeing firsthand the reality of the Earth in space, which is immediately understood to be a tiny, fragile ball of life, “hanging in the void”, shielded and nourished by a paper-thin atmosphere. From space, national boundaries vanish, the conflicts that divide people become less important, and the need to create a planetary society with the united will to protect this “pale blue dot” becomes both obvious and imperative.

It strikes me that this eclipse, and its draw to our experience of life, is not unlike the awe at the end of life. The drawing and that movement is perhaps generated in different directions so to speak. We can “attend” the eclipse and experience it in ways we enjoy, but the end of our life demands a different kind of presence – one no less awe-some, one that we may think we are not quite ready to experience.

In his book Places of the Heart: The Psychogeography of Everyday Life, Colin Ellard looks at places of awe.  At 154 of the book he looks at research into experiences of awe which focus on two essential aspects: a feeling of vastness and a sense of accommodation.  Vastness is the feeling of hugeness and grandeur, while accommodation describes our response to what created the feeling.  Ellard notes this often involves contradiction. An excellent article on awe (and its self-diminishing aspects) and prosocial behavior can be found here.

What is the inevitable here? We can easily face and even celebrate the inevitable when it is. . . . not too close and personal!  But what of dying and how can we recognize it as it approaches and obscures our sight ? Most of us don’t want to see death coming, so we turn away!

When people refuse to have the conversation about dying and its uncertain circumstances, to name or appoint someone to speak for them in the event they are unable to do so on their own, well – then the doctors will decide for you.  Here’s an interview with Dr. Jessica Zitter, ICU and palliative care doc and author of Extreme Measure, a book about the ethics of end of life medicine. Thanks for sharing that with me Georgine!

So maybe there is some preparing we can do for the eclipse(s) of our life. . . .   I think these Buddhist sayings (dhammas) sum up this essential changeable quality of our nature and that of the cosmos most succinctly:

I am of the nature to decay, I have not gone beyond decay.
I am of the nature to be diseased, I have not gone beyond disease.
I am of the nature to die, I have not gone beyond death.
All that is mine, dear and delightful, will change and vanish.

It’s a hard place to just be, to be with the uncertainty – will there be a sun that returns after the moon passes over it completely?

The eclipse of –  disease, misfortune, old age, fear of change, death.

Perhaps we can see this eclipse opportunity as an invitation, a path, to assist us in recalling how to revere, to feel deep respect or awe for something, for our relationship with the world and with each other.  In this respect, we remember reverence through nature – our nature – not outside, but inside each of us.

© 2017 Barbara Cashman  www.DenverElderLaw.org

Dementia, Fear and Aid in Dying

Sunset on an Artificial Lake

 

For this first post of June, I am revisiting a topic that has been discussed in previous posts: Alzheimer’s (or other forms of dementia) and the fear of aging.  Combining that volatile mix with the question of assisted dying presents a long list of novel questions.  The topic  was sparked by a phone call I received from someone residing in another state but who was looking for information about Colorado’s End of Life Options Act.  The specific query concerned the caller’s desire to explore options to end a spouse’s suffering from Alzheimer’s disease.  My response was fairly straightforward and I think the caller was a bit surprised by my candor.  I explained that under the Colorado law a patient or “qualified individual” was required to, among other things, have the capacity to give informed consent to the  receipt of the aid-in-dying medication to end the qualified person’s life.  See Colo. Rev. Stat. § 25-48-102(13) defining “qualified individual” and § 106(e) which concerns more details of the individual’s “informed decision.”

The caller was surprised when I explained that the only legislature which has to date considered expanding the aid-in-dying law to dementia patients was Oregon.  The Oregon Senate Bill 893 would allow for those persons otherwise qualified for administering receiving life-ending medications under Oregon’s Death with Dignity Act, except that the  patient who ceases to have capacity to give informed consent can still be given life ending medication if there is a specific advance medical directive which expressly authorizes an agent under a medical power of attorney to collect and administer the life-ending medication if the incapacitated person previously received a prescription for such medication.

Alzheimer’s Disease and other forms of dementia (here I will collectively refer to them as AD) are typically the most feared diseases of post-modern westerners who privilege their rationality (remember the Cartesian mantra “I think therefore I am”) and perceived autonomy over all else.  Further, our techno-medical way of examining aging, of parsing out different functions of one’s life ascribed to different body parts, leads us to believe that whatever form of cognitive impairment – age related or otherwise – might just be a part in need of fixing or a disease waiting to be cured. This type of reductionist thinking refuses to look outside its own narrow pigeon hole. In the meantime, those of us who do not perish will age in our own unique ways and many of us will struggle with its challenges.

Whose fear is it – and whose suffering?

What do we make of this fear of AD and fear of a person’s – er – a personality’s – disintegration?  I think in several important ways it is the same fear as the terror of dying, just a bit more latent and prolonged, and therefore more menacing than death for some people.  I’ll quote from Shakespeare’s Julius Caesar (III.i. 102-105) here, the conversation between Cassius and Brutus:

Cassius: Why he that cuts off twenty years of life

Cuts off so many years of fearing death.

Brutus: Grant that, and then death is a benefit:

So are we Caesar’s friends that have abridged

His time of fearing death.

There are many ways to respond to one’s own AD and to that of a loved one’s.  One way is to project our own fears onto the other person, who appears a shadow of the former self or as completely incapacitated.   But there is no standard response, even though some “conventional wisdom” (I use the term tongue in cheek here) might be welcomed by many who find the disease and its process most bewildering.  A slight detour here . . .

Bewilder is defined in the Merriam Webster online dictionary as (transitive verb):

1:  to cause to lose one’s bearings (see bearing 6c) bewildered by the city’s maze of roads;

2:  to perplex or confuse especially by a complexity, variety, or multitude of objects or considerations His decision bewildered her. utterly bewildered by the instructions.

And what if we break down that verb into a command – be wilder, wild from the noun wild) to be:

1: A natural state or uncultivated or uninhabited region.

2: (the wilds) A remote uninhabited or sparsely inhabited area.

Now back to my topic. . .

My concern is that there are many faces of Alzheimer’s Disease just as there are many aspects to an individual’s response to a loved one affected by AD.  I am thinking particularly of a recent article published in Kaiser Health News, entitled “How to Help Alzheimer’s Patients Enjoy Life, Not Just ‘Fade Away,’” and you can read that here.  The fact remains that each person is affected by AD is his or her own way and the “preoccupation with the cerebral pathology” (which the psychiatrist Dr. David Rothschild criticized in his 1936 paper on the psychodynamic model of senile dementia) often serves to fan the flames of fear and anxiety over our collective preoccupation with the losses of aging.  There are many other paths to choose here – not just the one of least resistance which is fear based.

© 2017 Barbara Cashman  www.DenverElderLaw.org

Honoring Elder Mothers this Mother’s Day

 

denver elder law

Beautiful Hearts

There are many versions of the history of Mother’s Day and I found an excellent compilation at the National Women’s History Project.  As we all know, Mother’s Day will be celebrated (in this country) this Sunday, May 14, 2017.  There are many ways to honor our mothers – even if our mothers are no longer living.  In this post I’m tying together two seemingly disparate threads: how to honor our elder mothers on Mother’s Day by considering the plight of a large number of impoverished elder mothers if the American Health Care Act becomes the law of the land.

Last week I posted about long term care insurance, why it is helpful and . . .  how we shouldn’t be complacent about the availability of Medicaid services for poor and sick elders who lack the resources or savings to self-insure.  Little did I know that just hours after that post, I would get news of the U.S. House approving a version of the American Health Care Act which would, if it becomes law, gut Medicaid for millions of people, including elders!

What’s at stake?

Medicaid expansion under the ACA will be rolled back under the AHCA.  Here are some details about Medicaid expansion from a 3/26/17 Forbes article: From 2014 through 2016, the ACA’s Medicaid expansion population is funded 100% with federal dollars. Beginning this year, states gradually have to pick up some costs, but the federal government still picks up 90% or more of Medicaid expansion through 2020. It was a better deal than before the ACA, when Medicaid programs were funded via a much less generous split between state and federal tax dollars.  That article points out that the Medicaid expansion has been a boon to health insurance company giants like Aetna, Anthem, Centene, Humana and UnitedHealth Group, who have enrolled millions of new members under the expansion.

As this article from the Kaiser Family Foundation illustrates, the hardest hit under the AHCA appear to be nonelderly disabled adults, folks with conditions or diseases like cerebral palsy, multiple sclerosis, developmental disabilities, people affected by brain injuries and so on.  But the AHCA would adversely impact elders as well, by its move to a “block grant” to states (a fixed $$ amount for each beneficiary) as well as the elimination of the ACA’s protections for people with pre-existing conditions.   Of note is the “no” vote of U.S. Rep. Mike Coffman (R – CO) on the grounds of the AHCA’s failure to protect the relatively small number of persons with preexisting conditions, who would be left without any coverage.  You can read the AARP’s post about this here.

It is unlikely that elders on Medicaid will be heard from in large numbers about their loss of insurance coverage and benefits, but elders who will see their insurance premiums increase may be more vocal, and I think it’s a safe bet to count on the insurance companies (who benefitted from Medicaid expansion) to raise a hue and cry when the U.S. Senate examines the proposed legislation.  A Forbes article from 5/7/17 notes that “Of the 75.2 million Americans covered by Medicaid, 54.7 million are enrolled in private plans, a report from consulting firm PwC indicates. Much of the recent growth has come from Medicaid expansion, benefitting not only insurance companies but hospitals, doctors and other medical care providers.”

Without Medicaid funding from the federal government, which was the impetus for Medicaid expansion under the ACA,  states will be left on their own, with limited funds from federal “block grants” to cover a fraction of those persons who were enrolled and covered under Medicaid, or a fraction of those persons’ health care.  The Congressional Budget Office published its analysis of the AHCA on 3/13/17 and the summary states that the CBO and the JCT (Joint Committee on Taxation) “estimate that enacting the American Health Care Act would reduce federal deficits by $337 billion over the coming decade and increase the number of people who are uninsured by 24 million in 2026 relative to current law.”

For more information about the AHCA’s impact in Colorado, you can read a Denver Post article here from several weeks back.  The American Medical Association, which opposed the AHCA prior to its House approval, issued this statement on May 4, 2017, criticizing the bill for its results which would cause millions of Americans to lost access to quality, affordable healthcare and un-insuring those with pre-existing conditions.  Many of those folks with pre-existing conditions are elders.

If you aren’t tired of seeing all these links and want to read more, here’s a link to a New York Times article about who would be the winners and the losers under the AHCA.

Please consider honoring mothers by educating yourself about the AHCA and sharing your thoughts and opinions with others, perhaps even your elected officials.  It’s time to make the conversation about something other than money…

© Barbara E. Cashman 2017   www.DenverElderLaw.org

 

 

Do You Need Long Term Care Insurance?

Just Curious!

Like many other questions I pose to clients, who ask me the question first – my answer often begins with . . . “it depends.”  This particular question is often posed by clients doing pre-retirement planning and this may be the best time to be considering one’s options about how best to plan for retirement.  I would consider how one answers this question posed in the title to be part of how we look at our elderhood and its challenges and uncertainties, about which I have recently blogged.  So I will start with some basic questions.

How long will you live?

Sure, I bought a crystal ball a couple years back from a local shop, Grandpa’s Attic in Littleton, but I haven’t yet found a reputable online “gazing” course to hone my crystal ball reading skills. . . . ! Let me know if you have any leads on that.

Will you have health conditions that will make it difficult for you to live independently?

Some of us already have chronic health issues by the time we hit our 50’s or 60’s, so this might be a “heads up” that things could get progressively more difficult.  But many of us just want to simply pretend that a downturn in our health status isn’t likely and so somehow it wouldn’t be possible that we will outlive our financial resources.

Will you have enough money saved to cover for the needed additional care?

Many elders I know want to leave something to their kids after they’re gone.  How does the need to pay for care services, which one typically had been paying for previously in one form or another (if the elder had not been a longtime recipient of government benefits) adversely impact the person’s ability to leave a legacy to family members? Well, simply put, it can pit your own well-being and financial wherewithal against your child’s desire to inherit from you.  I know, it sounds crass and the kind of thing that would never happen to you . . . but the fact is that we elder law attorneys see a fair amount of this.  Why provide the temptation for your kids, to pit your ability to pay for your care against their ability to inherit funds from you?

If you don’t have sufficient funds to pay, who will pay for your care?

Many people assume that if they can’t pay their own way, perhaps family members will care for them.  In fact, our health care system (and I am reminded of Walter Cronkite’s quote “America’s health care system is neither healthy, caring, nor a system”) relies heavily on family caregivers to provide free services to help manage their loved one’s care, improve the patient’s quality of life, as well as reduce costs to the health care system.  Many folks simply want to assume that they will be able to stay in their home, regardless of their physical or medical condition.  This behavior has a name: avoidance or denial!

Will there be sufficient levels of public assistance available in the even you run out of money?

If you think that there will be plenty of money from your fellow taxpayers to fund your care, you might want to reconsider! The Medicaid expansion in Colorado under the Affordable Care Act made many more funds and programs available to impoverished elders who could not afford long term care services, but the continuation of these funds and services is not a sure thing!  The failed American Health Care Act would have gutted those funds available for elders.  Read more here from Justice in Aging’s blog.

Do you already assume that long term care insurance is going to be too expensive?

I met a financial advisor last year who was fairly new to the business, she told me that only “wealthy people” get LTC insurance. I explained to her in my experience that was not the case!  There are people who make getting a LTC policy a financial priority, and they aren’t always those folks who can otherwise afford easily to self-insure – meaning the wealthy who can afford a Cadillac LTC policy or who have enough funds to privately pay for care without making a dent in their kids’ inheritance.

The fact is, there are more ways to fund the purchase of an LTC policy than you can shake a stick at!  Here’s an article by Wade Pfau from Forbes magazine that has several helpful links to the smorgasbord of options currently available.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

 

Identifying the Inner Landscape of Elderhood

 

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

November is National Family Caregivers’ Month

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

 

Longevity, Dementia and Ventilator Use

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