Medicare and the Midterm Elections?

On the threshold

The Future of Medicare as We Know It Will Be Affected by This Election

Medicare is the federal health insurance program for people who are 65 and older and a small group of other folks.  It consists of several parts: Part A (Hospital Insurance), Part B (Medical Insurance, which covers doctors’ services, outpatient care, home health services, and other medical services), and Part D (which covers outpatient prescription drugs).  The Congressional Budget Office states that

Nearly all Medicare beneficiaries enroll in the program soon after they become eligible, typically either at age 65 or two years after they qualify for Social Security Disability Insurance benefits. Part A benefits are paid from the Hospital Insurance Trust Fund (funded largely through payroll taxes); Part B and Part D benefits are paid from the Supplementary Medical Insurance Trust Fund (about 25 percent funded by premiums paid by enrollees and about 75 percent funded from general revenues).

I know of baby boomers who aren’t yet able to retire and qualify for Medicare who put off major medical care (to the extent is feasible) until they are covered by Medicare.  Medicare, such that it is, is a bright spot for most Americans who are retired.  But things are changing!

But Medicare may be under attack – at least according to Save Medicare Now,  whose website* lists these good questions to ask our elected officials and candidates:

•What specific steps will you take to preserve and strengthen Medicare for all beneficiaries, whether they are in traditional Medicare or a Medicare Advantage plan?

• How will you make Medicare more affordable for all the people who rely on it to make sure they get access to the care they need?

• Will you fight attempts to privatize Medicare by unfairly favoring private Medicare Advantage plans and/or by turning it over to big insurance companies?

• Medicare is a popular program, but there are significant gaps in what it covers, including most oral health, vision and hearing care. Do you think Medicare should cover these things? If so, how do we get there?

• Most people want to remain in their own homes as long as possible, but Medicare makes it hard for people with chronic conditions and longer-term illnesses to get home health care. Will you help ensure that all people who qualify can get home health care under Medicare?

• Some hospitals pretend people haven’t been formally “admitted” and are just “under observation” so they must pay out-of-pocket for nursing home care after they leave. Would you support pending legislation that would count all time a Medicare patient spends in the hospital toward the 3-day requirement to get nursing home coverage? What about removing the requirement altogether?

• At best you can generally get only 100 days of nursing home coverage if you are on Medicare. Do you think Medicare should include a long-term care benefit? If so, how would you accomplish that?

What Can We Do About Our Ever-Rising Health Care Costs?

This seems to have become something we all expect – that health care costs continue to rise in this country and as the baby boomers age, and these result in greater per capita costs to Medicare.  Did you know that the Affordable Care Act helped to reduce Medicare spending?  Remember all those tax cuts from earlier this year?  Many of the people left behind on those tax breaks are going to start feeling the pinch soon. The midterm elections may determine whether our elected officials in Washington choose to strengthen Medicare or to gut it.

If this is news to you, consider that cutting Medicare is one way that some members of Congress would manage the deficit.  This is an interesting development, particularly considering that a “Medicare for all” options is becoming more popular, even among Republicans.

Hmmm…. Maybe we need a health care revolution to stop our bleeding?

I often wonder when the credit agencies will start asking folks not what their monthly rent or mortgage payment is but rather what their monthly health insurance premium is!  My monthly premium for my HSA qualified plan (among the cheapest available) continues to rise and for the last couple years it is larger than my mortgage payment!

That’s all for now and don’t forget to return your ballots on time!

*Thanks to Professor Rebecca Morgan, a contributor to ElderLawProfBlog for psoting about the Center for Medicare Advocacy’s  website Save Medicare Now changes to Medicare.

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

 

 

The Dead Girl Who Continues to Live

Death Upside Down

Four years ago I wrote a post entitled “When Death Is Not Death: Stumbling Over the Parameters of “Brain Dead” about brain death and other medical-intellectual curiosities.  Turns out that one of the young women whose “brain dead” status I described is still. . . not dead, er… rather alive.  Alive for some people, seems to mean “brain dead” for others!  I read with interest Rachel Aviv’s Feb. 5, 2018 New Yorker article  about Jahi McMath, the teenager who suffered complications from a December 9, 2013 tonsillectomy at an Oakland, California hospital.  Some of the story is about our “health care system” and its values – about whose life matters, what condition of life passes for death.  The biggest challenge I see for all of us and this predicament we find ourselves in with health care in this country – is the dogma of the medical-industrial complex and its insistence on getting everyone “in line” about what passes for death and training us to simply not question the information we are given by the professionals reading the diagnostic screens.

Acting “As If” Death Had a Clear Legal and Medical Definition

To the extent we privilege the measurement of brain activity as a measure of our consciousness, as an indicator of the proof of our existence, we deny the underlying philosophical problem of defining or delimiting life and death (and consciousness).  Our present obsession with the measurable quantification of our biological activities is a major component of our current health care system.  We love the pictures of our insides and their operations in “real time.”  As long as we continue to collectively pretend that one’s existence can be verified by a particular type of brain scan, we will remain in denial.

But that denial is often a safe place, based on the “safety in numbers” type of thinking and as a result of the unquestioned power that doctors have and wield over us with their technocratic medical delivery system.

The Audacity to Think – or Rather Believe – That Our Technology Alone Can Be Used as a Means of Extending Someone’s Life by Prolonging Rudimentary Bodily Functions.

I talk to many people who confuse life support with extending one’s life and also with prolonging the dying process.

How do we tell the difference?  Why, ask the doctors!

Can I be kept alive indefinitely against my will? I haven’t heard that question yet, but I suspect there are versions of it being asked.  I am not comfortable handing over my authority to a health care provider who refuses to consider (let alone struggle with) the bigger questions about life – and death.

At a fundamental level, Jahi McMath’s story is about her family members who simply refused to believe what they were being told by the doctors.

One of the neurologists who examined Jahi McMath was the recently retired chief of neurology at Olive View – UCLA Medical Center.  Dr. D. Alan Shewmon was no stranger to cases where patients – many of them children or youths, survived for months or years after being declared brain dead by the medical establishment.  You can read his 1997 article “Recovering from Brain Death: A Neurologist’s Apologia”   here.

No answers in this post, only questions.  How far does the death taboo extend to our thinking or believing (which are often indistinguishable) about what passes for life?  In our brain-obsessed culture that is fascinated with measurements and arriving at the quantifiable, where does the subjective and mysterious show up – or is it simply banished and its existence denied?

© 2018 Barbara Cashman  www.DenverElderLaw.org

Financial Empowerment for Elders

The Mighty Tiber

I’m privileged to be the invited speaker for Denver City Councilwoman Kendra Black’s “Senior Series” program tomorrow morning on the topic “Financial Empowerment: Planning for Longevity.”  I hope it will be a lively Q & A session with the participants!

So what is this empowerment anyway? Merriam Webster’s online defines empower as:

transitive verb: (1) to give official authority or legal power to; (2) enable; and (3) to promote the self-actualization or influence of.

Empowerment has at least a couple layers here, but for my purposes in educating and assisting elders who are living longer and in greater number than ever before, the most important aspect is the “give legal power to” in the first definition.

What I’m thinking of are documents like durable powers of attorney – both medical and general (financial) as well as other documents like a living will, a disposition of last remains and other similar documents.

Modern estate planning traverses two different “time zones” if you will – both the longevity scenario which covers the incapacity and disability side of life among the living, particularly for a long life, as well as the other side of life, or what happens after someone passes away.  Empowerment can and does often involve both of these time zones, but it is critical that the first time zone be discussed and planned for because the longer we live, the greater our chances of being incapacitated (for short or longer term periods).  Empowerment here means a conversation not just about the inevitable (death) but also about what one’s preferences are in the event one cannot speak or communicate on their own.  But it also means enlisting support from our loved ones and friends, as well as our community, in the event we need help, support or protection.

That is a big part of what I will be addressing tomorrow.  The more we talk about these important matters, the easier the conversation becomes.  Some of these topics, like elder abuse and financial exploitation by adult children or caregivers, are still quite difficult to talk about – but they are necessary conversations!

I’ll be sure to share in a later post about what some of the participants concerns were and what we discussed.  In the meantime, I hope to see some of you at the Eisenhower Recreation Center (4300 East Dartmouth Ave., Denver) tomorrow at 10 a.m.!

© Barbara E. Cashman 2017   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

Denver Senior Law Day is Tomorrow!

Venetian Shop Window

Yep, Denver’s Senior Law Day is Saturday, July 29, 2017 at the PPA Event Center, 2105 Decatur Street, Denver, CO 80211.  You can register by emailing SLD@DenverProbateLaw.com or by calling 303.757.4342.  The cost is $10 and you get to hear the speakers, eat snacks and take home a copy of the 2017 Senior Law Handbook!

The opening presentation starts at 8:15 a.m., and features Maro Casparian, Director of Consumer Protection at the Denver District Attorney’s office, as well as other attorneys who will present on a number of elder law and independent living topics.

I will be co-presenting with my esteemed colleague M. Carl Glatstein from 11:15 a.m. – 12:00 on the topic of Advance Directives, the End of Life Options Act and Guardianship.  That’s quite the trifecta if you ask me! In particular I will be speaking about the End of Life Options (EoLOA) Act and will also have a bit to say about how the new law meshes with advance directives (like medical powers of attorney and living wills) as well as guardianship proceedings.

That’s all for this post!

JeffCo Senior Law Day is June 3, 2017!

The Rialto Bridge at night

May is National Elder Law Month! So – for the last post of this month I wanted to mention this important detail.

The event I’m participating in to observe elder law month, however, is next month . . . the Jefferson County Senior Law Day is coming up on June 3, 2017.  More information about it is here including registration information.

There will be twenty-four separate presentations on more than twenty different topics, beginning at 9:00 a.m. and concluding at 1:45 p.m.   I will be presenting on the topic “Managing the Challenges of Later Life Remarriage.” Last year at this Senior Law Day (there are a few different locations in the front range area, click here for more details on the Colorado Bar Association website) I presented on a similar topic.  Mine is a relatively new topic but is one about which many people have questions.

If you can’t attend this Senior Law Day and are looking for reliable information resources, you can click here to download the 2017 Colorado Senior Law Handbook, published by Continuing Legal Education in Colorado.

© 2017 Barbara Cashman  www.DenverElderLaw.org

Ethical Wills and “Legacy Letters” – an Overview

denver elder law

Italian Marble

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

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

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

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

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

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

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

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

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

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

© 2017 Barbara Cashman  www.DenverElderLaw.org

 

Colorado End of Life Options Act – A Vocabulary Lesson

A Threshold

I’m gearing up for a continuing legal education program where I’ll be presenting on this new Colorado statute [EoLOA for short, even if it sounds more like Hawaiian], so I’m now writing part of my materials.  I thought I’d start with the basics in this post by looking first at how terms are defined (or not defined) in the statute as well as the parameters of the “right to request” life ending drugs.  I will list the entire definitional section here, but due to space constraints, will focus only on a couple salient terms in this post.

Here’s an overview of some of the key terms in the statute’s definitional section, 25-48-102:

  1. Adult means an individual who is 18 years of age or older;
  2. “Attending physician” means a physician who has primary responsibility for the care of a terminally ill individual and the treatment of the individual’s terminal illness.
  3. “Consulting physician” means a physician who is qualified by specialty or experience to make a professional diagnosis and prognosis regarding a terminally ill individual’s illness.
  4. “Health care provider” or “provider” means a person who is licensed, certified, registered, or otherwise authorized or permitted by law to administer health care or dispense medication in the ordinary course of business or practice of a profession. The term includes a health care facility, including long-term care facility as defined in section 25-3-103.7(1) (f.3) and a continuing care retirement community as described in section 5-6-203 (l)(c)(I), C.R.S.
  5. “Informed decision” means a decision that is:
  • (a)Made by an individual to obtain a prescription for medical aid-in- dying medication that the qualified individual may decide to self- administer to end his or her life in a peaceful manner;
  • (b)Based on an understanding and acknowledgment of the relevant facts; and
  • (c)Made after the attending physician fully informs the individual of;
  • (I) His or her medical diagnosis and prognosis of six months or less;
  • (II)  The potential risks associated with taking the medical aid-in- dying medication to be prescribed;
  • (III) The probable result of taking the medical aid-in-dying medication to be prescribed;
  • (IV) The choices available to an individual that demonstrate his or her self-determination and intent to end his or her life in a peaceful manner, including the ability to choose whether to:
    • (A)Request medical aid in dying;
    • (B) Obtain a prescription for medical aid-in-dying medication to end his or her life;
    • (C) Fill the prescription and possess medical aid-in-dying medication to end his or her life; and
    • (D) Ultimately self-administer the medical aid-in-dying medication to bring about a peaceful death; and
  • (V) All feasible alternatives or additional treatment opportunities, including comfort care, palliative care, hospice care, and pain control.
  •  (6) “Licensed mental health professional” means a psychiatrist licensed under article 36 of title 12, C.R.S., or a psychologist licensed under part 3 of article 43 of title 12, C.R.S.
  • (7)“Medical aid in dying” means the medical practice of a physician prescribing medical aid-in-dying medication to a qualified individual that the individual may choose to self-administer to bring about a peaceful death.
  • (8) “Medical aid-in-dying medication” means medication prescribed by a physician pursuant to this article to provide medical aid in dying to a qualified individual.
  • (9) “Medically confirmed” means that a consulting physician who has examined the terminally ill individual and the terminally ill individual’s relevant medical records has confirmed the medical opinion of the attending physician.
  • (10) “Mental capacity” or “mentally capable” means that in the opinion of an individual’s attending physician, consulting physician, psychiatrist or psychologist, the individual has the ability to make and communicate an informed decision to health care providers.
  • (11) “Physician” means a doctor of medicine or osteopathy licensed to practice medicine by the Colorado medical board.
  • (12) “Prognosis of six months or less” means a prognosis resulting from a terminal illness that the illness will, within reasonable medical judgment, result in death within six months and which has been medically confirmed.
  • (13) “Qualified individual” means a terminally ill adult with a prognosis of six months or less, who has mental capacity, has made an informed decision, is a resident of the state, and has satisfied the requirements of this article in order to obtain a prescription for medical aid-in-dying medication to end his or her life in a peaceful manner.
  • (14) “Resident” means an individual who is able to demonstrate residency in Colorado by providing any of the following documentation to his or her attending physician:
    • (a)A Colorado driver’s license or identification card pursuant to article 2 of title 42, C.R.S.;
    • (b)A Colorado voter registration card or other documentation showing the individual is registered to vote in Colorado;
    • (c)Evidence that the individual owns or leases property in Colorado; or
    • (d)A Colorado income tax return for the most recent tax year.
    • (15)“Self-administer” means a qualified individual’s affirmative, conscious, and physical act of administering the medical aid-in-dying medication to himself or herself to bring about his or her own death.
    • (16) “Terminal illness” means an incurable and irreversible illness that will, within reasonable medical judgment, result in death.

So here goes . . . this law is only for adults! There is no provision for minors as is allowed in some European countries, like Belgium.  Next, you’ll note that the physicians (they must be licensed M.D. or D.O., no N.P. or P.A. allowed) have a huge amount of responsibility.  Remember that the gist of this law is to remove the threat of criminal prosecution for assisting a person to die by prescribing life-ending drugs under certain proscribed circumstances, so this focus on the doctors is wholly appropriate.

The two basic types of physicians are the attending and the consulting.  The attending physician is the one who has primary responsibility for the care of the terminally ill individual.  We are familiar with the phenomenon of the “pot shop” doctor here in Colorado . . .  well this provision is designed to ensure that the attending is not someone who simply provides the scrip for the life-ending medication or “medical aid in dying” [hereafter MAID] as the statute calls it.

The attending physician must “fully inform” the individual of the diagnosis, prognosis of six months or less; as well as the choice (see (5) (c) above) and consequences of requesting MAID as well as the alternatives including additional treatment, palliative care and hospice care.  Unfortunately for us, the terminology used in (5) is “informed decision,” which is a term foreign to Colorado law.  In the statute it is tied to “mentally capable” in (10), which includes the ability to make and communicate an informed decision to health care providers.  The Colorado term which is familiar to me is from the Colorado Medical Treatment Decision Act, at C.R.S. §15-8.7-102(7), which defines “decisional capacity” as the ability to provide informed consent to or refusal of medical treatment.  A similar definition is found in the health care POA statute, at C.R.S. §15-14-505(4).  The preceding section of that statute also states (at §15-14-504(4):

Nothing in this part 5 shall be construed as condoning, authorizing, or approving euthanasia or mercy killing. In addition, the general assembly does not intend that this part 5 be construed as permitting any affirmative or deliberate act to end a person’s life, except to permit natural death as provided by this part 5.  

Interesting, huh? While reviewing inconsistencies between these terms describing capacity is something attorneys might get excited about, it appears unlikely to provide difficulties for the physicians involved.   I will discuss the “mentally capable” determination a bit more in a later post that looks at mental health concerns.  Likewise, the duties and responsibilities of the attending physician are numerous and I will continue the discussion of what the statute describes in a later post.

I will conclude this first post about statutory language with an observation.  Death as described in the EoLOA is defanged, now a technical medical procedure, even a treatment if you will, for perceived intractable suffering.  The option to seek out MAID to end suffering involved with a terminal illness has little to do with the physical pain incident to illness (statistics from Oregon bear this out) and more with the loss of dignity and quality of life, presumably incident to the progression of the disease.  Why should an elder law attorney like me be concerned about this? Because in our culture, much of the experience of aging is focused on losses and precious little attention is directed toward gratitude for our continued life, such as it may be!

The other matter that concerns me greatly in the “technocratizing” of dying and actively choosing death is that we surrender even more power to our doctors.  This has little to do with our perception of how medical technology is used to extend life, but rather is concerned with our thinking about the nature of life, including disease, dying and death.  Our doctors cannot protect us from suffering – they are only doctors after all, but they can help manage treatment of pain.

More “vocabulary terms” next week.

© 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