Medical Durable POA and Mental Health Services – a Volatile Mix

Orca near Vancouver BC

Orca near Vancouver BC

 

The medical durable power of attorney (MDPOA) is an important document that all adults should have.  Why? As our population ages and our longevity is extended, our chances of becoming unable to give informed consent for medical care increase.  I have previously written about informed consent in the context of medical care, but suffice it to say that when a person is unconscious, unable to communicate or otherwise too “out of it” to give informed consent to decide yes or no to a proposed course of treatment – it is extremely helpful to have a substitute decision maker named who can decide for you.  In this post, I will not revisit the smorgasbord of health care planning documents as I have done previously, but I will instead focus on a much more obscure and troublesome intersection in the elder law field: where persons attempting to assist with the requested care of an older adult who has previously been diagnosed with mental illness can get caught in a thicket surrounding access to the mental health information.

Why is this a big deal – can’t an adult (known as a “principal” in power of attorney terms)  with mental illness simply designate an agent under an MDPOA just like any person, assuming that person is not under a legal disability such as a guardianship?  Surely I am remembering that guardianship is not automatic by any stretch for an adult with mental illness or with developmental disabilities. . .

The answer is yes, but . . . well, it can be a bit more complicated than that.  As more adults – especially the aging baby boomer cohort – reach retirement age, there are more people who will have benefited from a more open attitude toward the provision of mental health services in this country.  Just because there are mental health diagnoses doesn’t mean they have to overly complicate that person’s naming of an agent under a health care power of attorney, but they sometimes result in that.  Most of us don’t think about this aspect in the context of “health care” and the MDPOA, but there are important details that can trip up our longevity planning and complicate access to information and assistance for an adult which otherwise might easily be provided by family members or other loved ones on whom we rely.

What does this scenario look like?  This doesn’t come up  very often, but when it presents itself, it is often very challenging to sort out and even more difficult to come to an arrangement that meets the needs of all those involved.  On a continuum, the most straightforward situation is with a family member who is seeking to name, in writing, particular persons as his or her agents.  In this scenario, it is a good idea to have a customized MDPOA which sets forth the scope of the agent’s powers, so it is clear that they include mental health matters.  Where it gets much more difficult is where the adult may want to name an agent but doesn’t feel clear about the mental health decision-making authority or where the person’s capacity to execute a MDPOA may be in question.  The most challenging situation is where a concerned family member seeks to petition the court regarding an elder adult, who might otherwise be a person who is incapacitated under the guardianship statute, and for whom a doctor’s letter would generally substantiate the nature, extent and cause of the incapacity, except that if mental illness is the primary diagnosis, then much different protocols apply to the protection of that information, and there may also be warranted a different type of proceeding in the probate court.  Let’s take a closer look at some of these issues.

Here’s a link to an overview of the treacherous terrain involved here.  There is also something known as a psychiatric advance directive (PAD).  In Colorado this means that a MDPOA may have instructions, or instructions may be given to the agent named in the MDPOA which specifically relate to the provision of mental health services, including psychiatric medications or hospitalizations.  These instructions must appear in the MDPOA as they may not otherwise be recognized in a “stand alone” document.

Some of the problems originate in the different sources of law – federal law of the Health Insurance Portability and Accountability Act HIPAA relating to protected health information, for example, and state law relating to protective proceedings (guardianships and conservatorship) and mental health proceedings. The appointment of an agent under an MDPOA is governed by state law.

HIPAA is a federal statute which has had a tremendous impact on health care providers since it was promulgated in 1996.  My own MDPOA form refers to the regulations (from the Code of Federal Regulations) which cover the statute’s provision regarding who is a person to whom information can be released.  The codified HIPAA rules cover protected health information and its access, including electronically transmitted health records and require consent for the disclosure of such information to third parties.  Where an agent is named to make decisions on behalf of the principal and the principal cannot give informed consent to treatment, the agent obviously requires access to the medial information in order to make a decision about treatment options.

Mental health matters are generally governed by state law.  In Colorado, a statute governs the particular types of providers in the mental health field, including psychologists, social workers, counselors, therapists and others.  See C.R.S. § 12-43-101 – 805.  Note that HIPAA gives an exception to the general rule requiring consent prior to sharing of information regards “psychotherapy notes” which are a special form of protected information and the regulation is fairly detailed.  See 45 C.F.R. § 164.508(b), (c).

The connection between federal HIPAA law and state mental health legislation and other sources of law generally concern the disclosure of information.  While HIPAA is a comprehensive federal statute, it is not designed to preempt state law.  The CFR relating to substance abuse regulation (which fall under the umbrella of mental health for HIPAA purposes) provides that the federal law is designed as a “backstop” of sorts in that if the state law is more protective, it controls, otherwise the federal law often provides the minimum standard.

There has been some recent criticism of Colorado’s rules relating to what constitutes an “imminent danger” for purposes of an involuntary commitment (a/k/a 72 hour hold).  Finally, for more information, see this article about HIPAA and mental health records.  That’s all for now, stay tuned for developments.

©Barbara Cashman  2015   www.DenverElderLaw.org

The Continuing Adventures of the Psychopomp: Grief As Psychopomp

Natural Beauty

Natural Beauty

This post is dedicated to my dear cousin, who recently lost his beloved wife of forty years.

Yes, this is another installment in my series, but it wasn’t quite planned that way. . . .   After traveling to the funeral out of town, I thought more about this psychopomp topic and thought about the other side of death, what the mourners, those grieving face in going on without their loved one.  Life as they know it, as my cousin recently observed “is over.” What then remains is a future that requires the survivors to reimagine their lives, the mourners must now construct their lives without the active participation of the one they love.  Here it strikes me that grief is also a doorway, a threshold and . . . .a psychopomp in some form because it will take us to that new world, often an unimagined life.  Here is where the grief, the being and doing of it – ready or not! – does transport us to a new and unfamiliar terrain of our lives, a new way of living.

Whether we believe in an afterlife is often beside the point for many of us – grief invites us to feel and to be with it and to imagine what our life could or might look like without that person because, while we are imagining, we can’t believe or disbelieve. It strikes me that the loss, the sense of shock that often accompanies a death of a loved one that often causes a sense that things are not quite real or even surreal, occurs in both the event itself as well as our reaction to it.

So grief too, is often itself a kind of death, a death of the known and familiar existence, a death of identity relative to the loved one.  I wonder – might this prepare us (the survivors, the mourners) somehow also for our own eventual demise?   This makes me think of some of the emotional responses to grieving, the activity of grieving and how we feel it in our bodies.  Is grief capable in some way of turning us inside out?  The death of the loved one causes some kind of corresponding death in us as well.  We simply cannot go on as before.  But what was the life before, and how did we think of it and experience it?   I think of Tom Cheetham’s book: All the World an Icon: Henry Corbin and the Angelic Function of Beings (North Atlantic: 2012) and his observation:

  When we can give up a life lived in pursuit of “objective Truth,” then the world fills out, comes alive and comes toward us in its freedom . . . “interiorization” is . . .  a matter of entering, passing into the interior and, in passing into the interior of finding oneself, paradoxically outside. . . “ 

Cheetham at 185.

The movement here of grief, away from life as it was previously known (I don’t think it’s a huge stretch to liken it to the “objective Truth” reference above), can be precipitated by the “inside-out” or “upside-down” feeling of the lives after profound loss.  In addition, our lives may have an aspect of feeling that is immanent or transcendent, and perhaps both at different times.  I will contrast them here:

          Immanent – is defined as being within the limits of possible knowledge, inherent, remaining within; and

          Transcendent – going beyond the limits of ordinary experience, greater than what is usual.

We typically focus on the transcendent here, as in the moving beyond, toward considering the possibility – because we are left with no real alternative – that the deceased is gone but there is still meaning in their existence, that there is some felt meaning beyond us in our physical presence.

Here, the invitation, the movement into grief can be a means of poiesis.  Poiesis means “to make” in ancient Greek.  This kind of work reconciles our imaginal activity (outside of belief, it is by nature supra-rational) with the stuff and matter of our existence, and this is done within the construct of time.  And yes, I could go off on a tangent about poiesis, but I will resist the temptation.  This kind of work, it strikes me, is a destruction of the idol of time (akin to that “objective Truth” mentioned above) as we knew it, a life as we expected it to be.  I have previously referred to the work of Massimo Cacciari, the Italian philosopher and politician who wrote:

       The greatest idolatry is the cult of the has-been, of the irredeemable it-was.  Against it, the

living raise their cry-song to the Living.  Only at this point – in the moment of song – can they truly

call themselves living; prior to this they were a succession of moments destined to death, born to die.

The Necessary Angel, at 51 (SUNY Press: 1994)(M. Vatter, transl.)

Cacciari was not writing about grief in that quote, but it struck me that in his term “chronolatry” there is the possibility of grief, of grieving for what was and never will be again, which is also that which allows us to fully feel the present and its fullness or emptiness  – whether we want to feel it, or not.  And so, the “idol” or fixed idea of the life that was known, that was lived with the person now deceased, is not broken or destroyed but rather it is transcended to a new meaning, a bigger one necessitated by that deceased person no longer actively participating (or seeming to participate) in the mourner’s life.  I am not saying that this is what grief is, while I find all the writings about grief very helpful in many respects, I also find them constraining and unhelpful to the extent they attempt to identify some “grief process” which all of us must “go through” in order to come out the other side or to get on with our lives.  Grief is simply too big to be left to the psychologists alone to develop such a typology or taxonomy!

Grief as a psychopomp here is a threshold, an invitation to cross over from that life that was – the idol that is only a physical shell, to arrive at an icon that invites a re-imagining of new life with a bigger (or smaller) meaning, which is often one that moves into the meaning of transcending.  Beyond the shell of the idol, the icon glows with possibility, it represent a threshold where the can be an unfolding into the future.  Grief here, is the invitation, the psychopomp that is uninvited and unfamiliar – yet the one who cannot be ignored.  What is left is somehow beyond our reach, but imaginable and comes to us, moves toward us even in the depth of our despair.

 ©Barbara Cashman  2015   www.DenverElderLaw.org

 

Ballroom Dancing, Delight and Dementia Prevention

Dancing With Heart

Dancing With Heart

Say what?  You mean that social dancing makes you smarter?  Why yes, smarter in the sense of maintaining what we’ve got as we grow older.   I liked this article entitled Use It or Lose It: Dancing Makes You Smarter by Richard Powers.  Dancing might seem like a frivolous activity, but in fact it is fabulous means for the brain to integrate several of its functions at once.  These functions include kinesthetic, musical, emotional and rational.  Ballroom dance is what I am focusing on because I am pretty new to it, but other forms of dance are great as well.  We’re talking about improving mental acuity by creating new pathways.  Isn’t that what we’re after in this whole longevity-obsessed, youth-adoring culture of ours?  We don’t really want to do the same exact thing (like crossword puzzles or Sudoku) for the rest of our lives do we? At least a few of us are here to enjoy what we’ve got – I’m pretty certain about that.   At least one centenarian has attributed her longevity to ballroom dancing.  Another dancing centenarian observed that ballroom dance has kept him young at heart.  Finally, there is the 94 year old yogini (a female yoga practitioner) who observed yoga is the dance of the spirit. Ballroom dancing is the physical awareness that comes from the joy within us.  I wholeheartedly agree with her about ballroom dance and joy.  I can’t imagine having an awful time on a dance floor!

Not that it isn’t fun to engage in your favorite mental or physical activities, like reading, playing golf or working puzzles, but frequent dancing was #1 in a study published in the New England Journal of Medicine about recreational activities and mental acuity in aging and reducing the risk of dementia.  Here’s another article about “waltzing your way to longevity and better health.”

You might think that ballroom dancing is predictable patterns . . .  that is, if you had never really learned how to ballroom dance!  Ballroom dance is a form of human communication that is variable and unpredictable, in addition to being highly personalized.  Yes, you may think of the highly choreographed Fred and Ginger dances, but most ballroom dance is “freestyle” meaning it is not choreographed or predictable.

Okay, I should mention this post is in honor of my all day activity last Saturday at the Marriott City Center grand ballroom – the Arthur Murray Colorado Showcase dance competition.  Yours truly danced a total of nine dances including a waltz solo, along with fox trot, tango, merengue, rumba and a few more. This is the delight part of the post!  I performed (with my partner) a choreographed solo and the rest of the dances were “freestyle” meaning that leader and follower have to pay attention to each other’s cues and make split second decisions. . . . together!  Social dancing (like at my Arthur Murray studio in Lakewood) means you have different partners, which means different communication, leading, following and dancing styles.  Yes, it keeps you on your toes!

Last week I received my latest issue of Scientific American Mind and it has an article entitled The Healing Power of Music, which discusses new therapies that are using rhythm, melody and beat to help people with brain disorders and injuries to recover language, hearing motion and emotion.  Music engages people because it is enjoyable, it makes us happy (read: it initiates changes in the distribution of neurochemicals that can improve mood and calm us, allowing for healing) permits synchronization (by tapping along) and it is, of course – social, meaning it can be a collective and not simply an individual experience.   Perhaps this is another key to ballroom dance’s reputation as a means of promoting joy and social connection to others.

One last thing, I promised my dear friend Beth, who got me to try out dancing at her studio a few months back (and I have been hooked since), that I would participate in her fund-raising effort for Team Not For Sale, by making donations for my solo and freestyle dances at the Colorado Showcase as she was to planning to make for her own dances.  Team Not for Sale has many professional sports figures (Beth is a huge baseball fan, while I am not a fan of any sports team . . . ) but its focus is to raise awareness of human trafficking, slavery and exploitation and to prepare people affected by exploitation to enter the workforce.  It is a worldwide problem and nearly all the victims of sex trafficking are women and girls.  I think in this respect dance is a form of freedom, of freedom to express our joy, to raise it and share it with others, while simultaneously recognizing that many of us do not have such opportunities to freely express such joy.

 ©Barbara Cashman  2015   www.DenverElderLaw.org

 

Physical Intimacy and Elders or . . . . Sex in the Nursing Home

Denver Botanic Gardens July 2014

Denver Botanic Gardens July 2014

Deep within the youth-glorifying part of our culture, right next to the expansive real estate of death denial, is a controversial aspect of our humanity subject to the aging process – the physical intimacy-denying part of our collective conception of what is “appropriate” behavior for elders. It might also be part of ageism, but I’m not too sure about that.  Last month I attended a continuing legal education program put on by two of my colleagues – Ayo Labode and Mary Catherine Rabbitt.  One of Mary Catherine’s short topics was intimacy between residents of skilled nursing facilities.  In fact, the topic for this week’s elder law section CLE program at our monthly meeting at the Colorado Bar Association offices is “sexual expression in long term care.”  I know it will be well-attended!  I thought it was time to bring out this draft of a post I wrote some months back and was waiting to finish.

I recall Roger Angell’s New Yorker article I featured in a previous post entitled “This Old Man.”  In fact, I will include a quote from it here:

More love; more closeness; more sex and romance. Bring it back, no matter what, no matter how old we are. This fervent cry of ours has been certified by Simone de Beauvoir and Alice Munro and Laurence Olivier and any number of remarried or recoupled ancient classmates of ours. Laurence Olivier? I’m thinking of what he says somewhere in an interview: “Inside, we’re all seventeen, with red lips.”

Many of us in my field of elder law are familiar with situations that run the gamut of this human need for intimacy that includes sexual expression in old age – whether it is someone’s 85-year-old mother who found her new husband through online dating or is the commonly occurring but not well-accepted sexual intimacy between residents in a skilled nursing or assisted living facility.  We are charting a new course for elderhood here!  Here’s a link to an article about sexually transmitted diseases and folks enrolled in Medicare.  The baby boomers have much to learn from our parents’ generation and many believe that with the burgeoning number of boomer elders, this issue is likely to remain a hot button for many years to come.  But let’s face it, in the context of elderhood, few are comfortable with talking about sex or death.

Intimacy is a basic human need for many of us that continues regardless of age and living situation.  As the boomers age and the number of assisted living and SNF residents continue to grow, this will be a challenge that will need to be addressed on a strategic or big picture level.  Here’s a short piece written by a long term care Ombudsman on this topic.  There are many sources from the psychological and medical community which address the benefits of intimacy for elders living in an institutionalized setting.  A newsletter for Geriatric Care Managers featured a story on Sex in the Nursing Home.

Beyond the ageist factors that can tend to make elders invisible and simply “too old” to merit sexual expression, the mental capacity issue here looms in the background in at least some segments of the population who are residents in long term care or similar type living arrangements.  Who determines the level of capacity required for consensual sex and what are the boundaries?  Australian authors Laura Tarzia and two others published a paper entitled “Dementia, sexuality and consent in residential aged care facilities.  You can read it here.

A related issue involving consent concerns sexual abuse, but most of those cases involve assault by staffers on residents, although there has been well-founded concern raised when registered sex offenders are residents of long term care facilities, particularly when residents and families are not notified due to the fact that there is typically no notification requirement, but some states are working on ways of keeping such residents out of the “general population” at a skilled nursing facility.

If you think it’s not so controversial, read this post about staff members at an Iowa nursing home who lost their jobs in the wake of sexual relationship between two residents with dementia in 2009.  A recent blogpost on this topic features a video clip from a doctor addressing some of the difficult issues.  The sex taboo in SNFs is going to have to change.  Read an interesting post here by an assisted living staffer about the large number of sexually-active elders and elders’ rights to “sexual self-determination.”

I will be writing more on this topic and I anticipate it will becoming much more mainstream as we look more closely at many of our ideas about how we age.  Stay tuned.

©Barbara Cashman  2015   www.DenverElderLaw.org

Is Physician Assisted Death Coming to Colorado?

The Road Only Appears to End

The Road Only Appears to End

I recently looked at the Colorado House bill 15-1135 on the topic “Terminally Ill Individuals End-of-Life Decisions, a/k/a the “Colorado Death with Dignity Act.”  You can read the January 9, 2015 draft here.  There are, as of February 2, 2015, two senate sponsors and an updated version of the bill.  My first challenge with this bill is the how it is marketed – the idea that “death with dignity” can only be accomplished by one’s own hand with the assistance of a physician.  If this sounds provocative, it is – but it implies that the disease process part of a person’s life or the dying from the insult of disease is somehow not otherwise dignified.  Here’s a link to a Jan. 27, 2015 Denver Post article about this proposed legislation, and a link to another appearing on Feb. 1,2015.  This is the first post in a series.

I find myself in the same camp as the hospice and palliative care community as far as the title is concerned.  The idea that the way to die “with dignity” is through physician assisted death by one’s own hand is offensive.  End-of-life decision making is an area in which Colorado residents and patients have many resources.  The title implies otherwise and is simplistic and misleading.  I also find the bill’s descriptions of “alternatives” such as hospice care and palliative care are confusing and misleading. I am unable to come up with a scenario in which physician aided death is a true “alternative” to these.  I think in all cases with which I am familiar, patients have already been under the care of a doctor for hospice or palliative care.  The physician aided dying is more of an “end of the line” complement of sorts to these well-established, even if not widely-recognized forms of medical care.  The primary distinction between these, what makes physician assisted death (PAD) a real alternative to hospice and palliative care is that physician assisted death is not a natural death as the result of a disease process.  PAD represents a premature death, hastened by a number of different perceptions and choices about what one’s life is for as well as one’s own ideas about loss of autonomy amounting to loss of dignity and as needless suffering.  In this respect, terminal disease is a failure of one’s ability to control an outcome, and fear of a change in one’s identity in the world due to a change in one’s relationship to others.  I think physician assisted death further isolates and marginalizes people and the dying in particular.  It is in the time of weakness and vulnerability when we need each other.  This is dignity, what it means to be human.  Here’s a link to a recetly posted youtube by Jean Vanier, of L’Arche Internationale, speaking to the English House of Lords, on why the strong need the weak.  I think it easily translates into why the healthy and living need the sick and dying.

Another big distinction between PAD and hospice and/or palliative care is the philosophical problem of distinguishing physician assisted dying from medical care.  That difficult distinction crops up throughout the bill with the challenge of identifying informed consent in a way that is a major departure from its history.  The Greek roots of the word “euthanasia” mean “easy death.”  There are different types of euthanasia, as described in this abstract from pubmed.gov and the moral dilemma presented by its practice is ancient.  Euthanasia is premised on the ending of life and may be voluntary or involuntary and active or passive.  Suffice it to say there is no bright line in this arena, only slippery slopes leading in both directions!

One of those slopes I find particularly troubling concerns the definition of “capable” in the bill.  This is defined in section 25-47-102(3) and it is overly broad.  We don’t have any context for this meaning of “capable” – capable to do what exactly?  This is the touchstone for capacity determinations in the field of estate and elder law.   Is this definition of “capable” for giving informed consent for health care purposes or something different?  I conclude it must be the latter, so the lack of a definition is a big problem.  Would a court need to determine someone “capable” to make a decision under this statute?  Under guardianship law, only those who have had a guardianship lifted are “adjudicated” as “capable.”  All adults, persons aged eighteen and older, are presumed by the law to have capacity.  “Capable” as used in this draft bill is too vague. Another part of the bill (the consulting physician confirmation of 25-47-106(1)(c) refers to this trifecta: requiring that the individual be capable, acting voluntarily and has made an informed decision.  I find this safety net here very interesting – what it is designed to protect against . . .  well that is not discussed anywhere, it is left unsaid.

The absence of any aspect of spirituality is telling – but there are those who think that leaving out the spiritual aspects and the soul-learning of the dying process are too hot not to handle.  See M. Scott Peck, “The Denial of the Soul: Spiritual and Medical Perspectives on Euthanasia and Mortality” (1997: Harmony Books) at 209.

Death is fearful, yet we carry our death within our lives.  Is the essential fear we are talking about in the PAD regime really a fear of loss of control, over our autonomy and the descent into helplessness?  I think in this respect it is a fear of life, life’s uncertain course that leads to our inevitable demise.  This fear of life is the adjunct of the fear of death.   Many of us maintain a certainty that our life is predictable and we can control things that happen to us, if we maintain that fantasy then most certainly are disease, disability and death an affront to our choice, an assault to our personal belief system and no longer simply part of life.  What if we were to do as Lau Tzu suggests – “take care with the end as you do with the beginning.”

I will close this first portion of the discussion of this proposed legislation with an insight from David Wendell Moller’s book “Life’s End: Technocratic Dying in an Age of Spiritual Yearning,) (2000:Baywood) at 159:

 . . . the sequestering of dying patients protects ordinary people from the terrorizing issue of death. . . . [the hospital’s] technological coordination of dying serves to submerge, deny and organize the dying process into professionally restricted categories which restrain the expression of personal pinings and fears for both providers and patients.”

It seems to me that the PAD bill serves to further the marginalization of the dying.  More about that in my next post.

©Barbara Cashman  2015   www.DenverElderLaw.org