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.

Will you need a dementia specific advance directive?

Reflection on a Lake

Are you one of the few and one of the brave who is willing to talk openly about dementia – specifically what kind of care you want and how you want your health care agent to decide for you in the event you have dementia?  Based on stats from the summer of 2017, fewer than one-third of Americans have executed a living will.

So, if you are one of those persons, this series of posts is for you!

By midlife, many of us have had some personal experience with a family member or loved one with dementia.  The disease Americans are most afraid of is the dreaded Alzheimer’s Disease (AD for short) or some other form of dementia.  For some of us, it overshadows even the fear of death.  Perhaps this is because that dis-integration of the brain causes us to forget the most basic of things – who we love, what we like to do, what is our identity, and even how to die. 

In our brain-centric culture, which so often takes a reductionist view of the body as a kind of machine (e.g., the heart is only “a pump”), to lost one’s mind is the most fearsome of possibilities.

 How will you know whether you might need a dementia advance directive? [Yes, it’s a trick question….]

Over the years I have worked with a couple clients who have been diagnosed with early stage AD.  These are typically the folks who are recruited to participate in studies involving the progress of the disease and new therapies.  Informed consent for voluntary participation in these studies can be challenging. Here’s a link to an informative background paper from the 2017 Research Summit on Dementia Care, through HHS.

What are our choices?

Do nothing and hope for the best. 

This is what most of us will choose by default.  “My kids will know what I want,” I’ve heard said with a shoulder shrug.  Really? How much more difficulty do we want to add to an already challenging situation?

Can’t I just rely on people I’ve already put in charge who know me to make the right decisions for me?

Yes, of course, as long as you have the documentation in place.  Most importantly a health care power of attorney, which names a person (an agent) to make decisions for you in the event you cannot give informed consent for medical treatment.  The health care provider is the person who decides whether a person can give informed consent.

You must rely on others, because dementia is a scenario which will leave many of us very vulnerable and unable to manage things on our own.  There, I’ve said it.  Is that really a fate “worse than death?”  There is an inherent dignity of human beings, regardless of our “cognitive status” or whether we have trouble thinking or remembering.

What do I need to consider to put in this dementia directive?

This is some heavy lifting…. Let me start with a bigger picture.  I enjoyed reading a recent New Yorker article by the late neurologist and writer Oliver Sacks which recounted the activities of two different patients with dementia.  One was a doctor who had been the medical director of a hospital where Sacks had worked.  Despite his mid-stage dementia, the doctor had periods of relative clarity where he believed he was a doctor at the hospital and would write prescriptions.  This was intermittent, however and some of the time the doctor was painfully aware of his predicament and his mounting losses. The article poses the basic question about how to treat someone with AD, do we honor the persons dignity and support them, to the extent feasible and appropriate, in the belief that they can still perform the job that served as the cornerstone of their identity?

This can be a tricky conversation, but of think of a relative who died in a facility from AD.  After she lost most of her ability to speak and communicate with others, she retained a decent command of her fine motor skills.  She had been an expert seamstress and embroiderer and my cousin reported how happy and occupied she was when she was given a knotted up necklace chain to untangle.

Okay, back to the response to the third question.  There is a big difference in a dementia directive between expression of a “freedom to”  in terms of what a person wants provided for them in the type of dementia care, and the right to express preferences which are a “freedom from” a statement of what is not wanted in advance of a time when we may no longer be able to object to such interventions planned or carried out “for our own good.”  How much can we describe and determine in advance and what will actually “stick” in terms of the two competing positive and negative statements?  Well, that’s a topic for my next post!

© 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 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

New Proposed Federal Legislation to Combat Elder Abuse

Italian Ceiling

 

The Elder Abuse Prevention and Prosecution Act (S. 178), passed the U.S. Senate on August 1, 2017.  You can read the text of the bill here.  It was sponsored by a bipartisan group of Senators.  It has moved to the House of Representatives for their review.

This bill has several important provisions which would support more federal involvement in areas of elder abuse and financial exploitation reporting and prosecution.  Some of these include: training federal law enforcement (FBI) in elder abuse detection; coordinating data collection and establishing best practices for data collection and sharing among local, state and federal agencies involved in reporting and prosecuting elder abuse; enhancing the services available under the U.S. Department of Justice’s Office for Victims of Crime so as to specifically include those aged 60 or older; imposing an enhanced penalty for those convicted of the specifically defined telemarketing or email marketing fraud under the federal telemarketing fraud statute; and some efforts directed toward guardianship oversight and abuse prevention.  The only problem with all the great things that this proposed new law could do is that there is no money allocated for its proposed activities.  If the bill makes it through Congress and is passed into law, it will be in a situation similar to the 2010 Elder Justice Act, many substantive parts of which lack funding for its important work.

Notwithstanding the important fiscal detail, it is important legislation in several ways that can help coordinate the woefully inadequate means of reporting elder abuse.  The federal government could help to standardize the definitions of elder abuse for the purpose of getting a clearer picture of its prevalence for reporting purposes.  Every state has its own laws and definitions concerning its elder abuse  detection and reporting  standards and some of these vary wildly, making the standardization of reporting incidents of elder abuse that much more difficult.

The federal government’s involvement here could assist greatly in getting a better idea of just how prevalent are certain types of elder abuse.  At the present time, there are numerous difficulties figuring out these important details and this obviously can interfere with the allocation of resources needed to adequately respond to the worsening problem of elder abuse and exploitation.

The numbers concerning the incidence of elder abuse and exploitation are already sickening to consider and they appear to be rising.  It is of critical importance to have adequate support for prevention and prosecution to combat this.

The bill has been endorsed by the bipartisan Elder Justice Coalition,  the American Bar Association and  the Consumer’s Union, among other groups.

If you think this legislation sounds like a good idea to help elders and their loved ones, then by all means be sure to contact your U.S. Congress member and share your opinion about this important legislation!

Stay tuned for a blog post about another piece of proposed legislation which has been introduced in the U.S. House (H.R. 2505) and Senate (S. 1151) known as the Credit for Caring Act of 2017.

© 2017 Barbara Cashman  www.DenverElderLaw.org

 

Caregiving is Not for Sissies!

Sideways Sky

 

In my latest issue of Bifocal, the bi-monthly publication of the American Bar Association’s Commission on Aging, I noticed a helpful new resource entitled Ten Legal Tips for Caregivers. Here’s a link to the document.  In case you’re wondering who that “typical” family caregiver is, a recent New York Times article written by a resident physician, identified her as

a 49-year-old woman caring for an older relative — but nearly a quarter of caregivers are now millennials and are equally likely to be male or female. About one-third of caregivers have a full-time job, and 25 percent work part time. A third provide more than 21 hours of care per week. Family caregivers are, of course, generally unpaid, but the economic value of their care is estimated at $470 billion a year — roughly the annual American spending on Medicaid.

The comments section of this NYT article is both telling and heart wrenching, as there are so many stories of people who recount many of the article’s observations that this massive group of volunteer caregivers put themselves at risk in ways from which it may be difficult to recover.  There is the great financial risk, cutting back on work in order to care for an elder parent.  This financial strain is measurable but probably the more disturbing numbers comes from other studies concerning the lingering health effects (like depression, anxiety and chronic disease) of extended caregiving.  A JAMA article from 1999 entitled “Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study” quantify the heightened mortality rates of caregivers.

So, enough of this gloom and doom, eh? Don’t let me get started on how this volunteer army’s numbers will be forced to multiply dramatically in the event the Affordable Care Act, with its Medicaid expansion services which many seniors now enjoy, is repealed.  Considerable portions of the Medicaid programs for elders will likely simply disappear under the block grants which could replace the ACA’s funding of these programs, which has taken several years to put in place.   Changes to Medicare from the proposed legislation known as the AHCA could compromise Medicare’s viability in a shorter time frame. That’s another blog post!

Olay, so what steps can a caregiver take to protect themselves legally?  The tip sheet identifies ten different steps or competencies which the caregiver can utilize to better assist the elder for whom they provide care as well as to protect themselves:

  1. Understand decisional capacity
  2. Know what legal authority you have
  3. Appoint a health care agent
  4. Complete a financial power of attorney
  5. Manage Social Security/ Veteran’s benefits
  6. Know your rights of access to health care information
  7. Know the signs of abuse, neglect and exploitation
  8. Know your rights if you face Family Responsibilities Discrimination (a form of employment discrimination)
  9. Understand your rights under the Family and Medical Leave Act (federal legislation)
  10. Consider a Personal Care Agreement (to counteract some of the financial losses described above)

This tip sheet, like other public resources made available by the American Bar Association, contains useful and helpful information.  It is a welcome reminder for caregivers that they should not wait until a health crisis to figure out the basics of how best to provide care for their elder.  Making advance care arrangements and learning more about how to manage information and choices for another (using durable powers of attorney) can help take some of the anxiety out of the “what if’s” so many caregivers face on a regular basis.  Turns out that taking care of the caregiver allows for better care to be provided for the elder who needs care.  That’s all for now!

© 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

 

 

Elder Abuse and the Mother-Child Relationship

Tree Mother

Tree Mother

 

Today I’m exploring the question of whether exploitation or neglect of an elder parent by an adult child presents differently due to the gender of the parent.  I will begin with a question:  is the elder parent – adult child relationship different between mothers and fathers?  What about when it “goes wrong” and results in neglect, exploitation or financial, physical or verbal/emotional abuse? I can say from my experience as an elder law attorney that elder mothers appear to be taken advantage of in ways that are often different from those means involving elder fathers.

This post crosses a lot of territory – spanning the abuse of a power of attorney by an adult child serving as agent, elder abuse resulting from neglect of an incapacitated elder, to the evolution of family conflict across many years of relationships.  Abuse in these contexts can take many varied forms and because it is part of a family relationship, a most intimate one of mother and child – it can express itself in subtle and slippery ways.

I have noticed in the estate planning portion of my work that fathers tend to have a much easier time with leaving disproportionate shares of an estate among adult children and also seem to be much more resolute about disinheriting a child.  One of the reasons might be that mothers tend to have a higher involvement and investment in the parent-child relationship, even as it evolves over the lifetime of the parent and the adult child(ren).  In my experience, mothers are more likely to hold out hope that a wayward child (whom a father might easily disinherit) will return to a more productive life path or that the filial relationship will otherwise be redeemed.

Some people might think that threatening one’s mother with putting her in a nursing home might amount to elder abuse.  I’m not saying that it wouldn’t constitute emotional abuse in some circumstances, which could be used by an adult child to further a strategy of dominating and controlling a parent for their own personal gain.  This threat could also stem from an adult child caregiver who is overstressed from his or her responsibilities to care for a (sometimes uncooperative or difficult) parent.  Sometimes what ends up as exploitation starts out as a willingness to assist the parent but perhaps due to the nature of the parent-child relationship or as a result of the buildup of resentment on the part of the child, the caregiving goes astray.  But what I’m talking about in this post goes a bit further.

As we all know, parents remain parents of children, with all of the emotional responsibility that entails – regardless of the age of the child.  The fact is that many elders are better off financially (or at least more secure) than their children and they may want to help their children financially, but there is a razor-thin edge between healthy nurturing and being subjected to emotional manipulation.  Here’s a link to an AARP article from 2013 which has some sad statistics.  Part of the problem is a sense of entitlement from the adult child or children.  Some of us in my field of practice use the term “impatient heir” to describe these adult children who seem to be biding their time until the parent dies and they can “collect.”

I don’t want to sound like a broken record here, but I have noted a number of times in previous posts that there is not very much current research documenting the prevalence of elder abuse.  There is some recent work on the sometimes toxic nature of filial relationships and elder abuse.  What is “taking care of” someone and what does it properly entail? Here’s a link to an abstract about the special significance of the adult daughter-elder mother relationship and the use of aggression. Underreporting is an obvious problem – particularly when the reason for underreporting is shame or embarrassment.  When an elder mother (or father) reaches out to me as a resource person to assist in remedying a situation, one of the first things I say involves the recognition of how brave the mother Is to contact someone outside the family to report on what is generally a highly embarrassing and sometimes shameful situation.  One elder mother I worked with recounted to me how her daughter told her that she was mean to her when she was a teenager and so the daughter’s control over her mother’s finances was part of a “payback.”  Another mother extended her home temporarily to a child from whom she had been estranged for many years, only to learn he had no intention of ever leaving.  The victim-victimizer narrative in these situations can get rather convoluted!

Dr. Judith Smith is a researcher in this field who is engaged in studying how family conflict plays out in the later years of the parent and she has focused on the parent’s feelings of ambivalence (e.g., a mother wanting to help her child versus the resentment of feeling the need to assist).  The National Adult Protective Services Association (NAPSA) recently added Dr. Smith’s research brief entitled “Elder Abuse, Mother Abuse and Parenting in later Life.  Here is a link to the power point training offered by Judith Smith, LCSW, PhD on Vimeo on which NAPSA based their report.

The ambivalence scale to which Dr. Smith’s training refers is described in more detail here by Karl Pillemer, in the article entitled “Ambivalence Toward Adult Children: Differences Between Mothers and Fathers,” and you can read the article on the National Institutes of Health website here.

As we continue down the road of longevity, it might help us to think about our long term familial relationships and how they are challenged or compromised as a result of a parent’s longevity.  When this longevity involves physical frailty, emotional dependence, cognitive impairment or other factors diminishing an elder parent’s autonomy – what is an appropriate response?  This is of course an ongoing conversation and I will continue on this topic in the future.

© 2016 Barbara Cashman  www.DenverElderLaw.org

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

Springtime in Assisi

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

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

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

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

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

  1. The Right to Die

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

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

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

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

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

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

© 2016 Barbara Cashman  www.DenverElderLaw.org