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

People Die Every Day, It’s Perfectly Safe – Why Would I Need a Guide?!

Side view of Navajo Twins, Bluff Utah

Side view of Navajo Twins, Bluff Utah

This is a picture taken outside my favorite fry bread restaurant, in Bluff, Utah.  The Navajo Twins, the rock formation depicted (and name of the restaurant), is named for the hero monster-slayers from the Navajo creation story.   Their story has also to do with the coming of death.

Some of us question basic notions around things like life and death.  Others, well . . . not so much.  Historically, we have symbols, guides, talismans and other “companions” who have accompanied us on the journey from life to death.  Whether you view it as a dark path of mystery or simply as a “lights out” simplicity of sorts, death is the great unknown.  Some of us feel more comfortable with a guide or at least a worthy companion for the journey.

Who will help us along our journey, who or what will guide us along this unknown path, the strange terrain of transition that is so foreign to us and around which there is much anxiety and fear?  Is there some post-modern guide for our purposes here?  I have used several pictures from Rochester’s Mount Hope which depict angels, who are probably the most readily recognized psychopomps in our culture, even if they seem, for many of us, outdated.  The most recognizable psychopomp in literature is Virgil from Dante’s Inferno.  Virgil conducted Dante through the nine circles of hell.  Nowadays there are so few authorities recognized for such a role as psychopomp, there are many different names for such roles or services.  In many traditions, coyote is a psychopomp.

An online dictionary offers this concise definition: psy·cho·pomp, ˈsīkōˌpämp/ noun

  1. (in Greek mythology) a guide of souls to the place of the dead.
  1. the spiritual guide of a living person’s soul.

As indicated above, the origin of the term psychopomp derives from Greek mythology, and denotes a spiritual guide of souls, traditionally to the place of the dead, but often also as a guide at the threshold of other mysteries as well.  For the alchemists, this person was Hermes Trismegistus and for archetypal psychology is often expressed as the magician. [Here I am relying on Carol Pearson’s 1991 book “Awakening the Heroes Within, at 193-208.]   In Jungian psychology, the psychopomp is the mediator between the realms of the conscious and the unconscious.  Sometimes a simple question is asked of us and this changes everything, like a missing puzzle piece brought into one’s life, which is no longer merely an intellectual question.  I’m thinking of the question posed to Parsifal in his search for the grail, “whom does the grail serve?” which caused his lost soul to realize that his divine counterpart (the grail king) had been living within his castle all along.  This is, as Monika Wikman describes it in her 2004 book “Pregnant Darkness,” (at 182) is mystery that is brought to life, embodied and is the carrier of the connection between the human ego and the divine self.

Going back to the beginning of the beginning as it were, my favorite story is the tale of the journey of Inanna, the Sumerian goddess of heaven and earth, to visit her sister Ereshkigal, the goddess of the underworld.  Sylvia Brinton Perera’s 1981 book entitled “Descent to the Goddess” is a beautiful rendering of this path of transformation and a woman’s inner journey by a highly respected Jungian analyst.

Let’s face it, most of us don’t remember these stories about questions, transitions and guides, or we had no use for them, so have we simply managed to forget the psychopomp and why a culture would have found one useful in the first place.  Perhaps that is the case.  It is probably more likely that in addition to forgetting the purpose of such a guide, we have transformed the notion, the metaphor, to fit our modern and post-modern necessities.   So, enter the psychopomp of the extra-terrestrial!  We still venture to the land of imagination and fantasy, to the strange, mysterious and uncharted worlds.  The command of Star Trek’s Captain Kirk to engineer Scotty “beam me up” comes to mind.  But if the angels of yore have become outdated in the modern and post-modern expression of technology, then it strikes me that the extraterrestrials are our more fully mechanized and measured angels.  The psychopomp is after all a threshold conductor, not something that is out there but is part of a relationship we have (each of us has) with the unknown.  In our space exploration, aren’t we essentially looking for relationship, to help us inform ourselves further about who we are, in relationship to _X_ (the unknown)?  Our fascination with UFOs is also about our relationship with mystery and that sought-after psychopomp.

Maybe we are reaching a point of unbearable tension between the progress of technology and what it is for – read: the expansion of consciousness.  What is the name of this new place and what is the human role in it?  Is it fully mechanized, an objective reality apparent to everyone  . . . .  or is it something or someone that has soul? Well, I think the new place is the latter because I tend to side with the ancient Heraclitus on this turf, that all the world is merely a cover, a means of thinking about boundless soul.  This is one of the reasons I think it is particularly helpful that we have people like Megory Anderson, whose book published in 2001, Sacred Dying, explores the re-animation of embrace of rituals surrounding the end of life, dying, death and mourning.  When we can engage is a ritual that is meaningful to us, we can discover our intention to be present – to ourselves and to the dying and others present, in ways that connect us with ourselves and the other, as a balm for the rampant anxiety and alienation that is so commonplace in our end-of-life situations in our post-modern Western, north American culture.

©Barbara Cashman  2015   www.DenverElderLaw.org

Law’s Response to Death: Where Do We Put Our Dead and Where Do They Go?

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Mount Hope Cemetery

After a couple weeks off from blogging I am back.  No, they weren’t actually planned that way, these things do happen and I do my best to regard these occurrences as kairos!  The word “cemetery” has many different meanings and connotations.  The online Merriam Webster refers to its origins as coming from the Middle English cimitery (derived the from Anglo-French cimiterie).  Its Latin origin is coemeterium and from the Greek koimētērion  meaning sleeping chamber, burial place, from the verb koiman to put to sleep. It traces the word’s first known use to the fifteenth century, but it seems natural that this word being based on the Anglo-French would have had an earlier iteration.  Cemetery is translated in German as Friedhof, a court or place of peace.

Cemeteries are a kind of public park, perhaps before many communities had such a thing (except perhaps for grazing cattle).  In this country, one source has named 1831 as the year the first cemetery was founded, with the  construction of Mount Auburn Cemetery in Cambridge Massachusetts.  I have featured another picture from Mount Hope in Rochester, New York, which was founded in 1838.  You might be wondering what larger European cities have done with all their dead.  Perhaps you have visited “the catacombs.”  A catacomb is simply an underground cemetery, a place for putting away human remains that was first built by the (ancient) Romans.   Of course there were Romans in Paris, which was then called Lutece.  Some of the more famous catacombs are those of Paris which are comprised of more than two hundred miles of tunnels, some lined floor to ceiling with bones and skulls.  Here’s a link to a cool picture of that along with some fascinating history of the bones of between six and seven million persons.  Compared to the elaborate cemeteries that are found in so many cities, catacombs seem to be a great “equalizer” in terms of the anonymity of the dead.  In addition to the underground catacombs in many European cities there are numerous ossuaries, rooms into which the bones of the dead are place.

So how did communities historically dispose of their dead?  In many parts of the world, this remains a mystery because there often doesn’t appear to be any historical record or evidence of of really old cemeteries or burial grounds that are identified as such.    Back to the title of this post – so how did we move from charnel hill to churchyard or memorial park?  What began perhaps as a memorial park in some communities might have been overtaken from the natural place of rest and continuity, of perpetual home to a display of ornate stone and limited and managed natural surroundings, all neat and tidy perhaps with nature and its processes seemingly kept at bay.

In addition to the public health aspects of managing the dead and the dying, their dispostion is now well-regulated in all of our states.  This includes the move from what were once private arrangements taken care of by family members to the consumer-driven service industry of providers of mortuary and funerary services.

Part of the legal protections surrounding the dead has evolved along with how we  think of and how memorialize the dead.  There are international law protections relating to corpses which grew out of international law as reflected by our long history of warfare between nations and of course civil wars.   The legal status of a corpse is in most respects as that of property, but there are important distinctions to be made.  Here is a link to a 1997 article in the Whittier Law Review about necrophilia.  Jeffrey Dahmer is the most infamous modern sufferer from necrophilia.  Such laws relating to corpses, to the extent they exist and are enforced, uphold our moral compass and social respect for the dead and our treatment of the dead with dignity and respect.  Desecrating, plowing over or covering up graves is a criminal offense.  Hate crimes are often extended to a victim’s grave, often targeted for the victim’s race or religious affiliation.

Concerning the cemetery, many factors came together in different ways across cultures to allow for the placement of the dead within the community.  Perhaps in many ways cemeteries are places where the dead can be “kept” so as not to be free to wander about and disturb the living.  The final resting place should be one that is afforded respect so that there is no need for the dead to disturb the living.  It is essentially a segregation between the living and the dead.  In many religions there is the idea that the living and the dead will be reunited – I’m thinking about Mircea Eliade’s reference to the Lakota ghost dance in Death, Afterlife and Eschatology (1967: Harper & Row) at 85.  And lest we forget for those religions which have a messiah, the significance of the sealing of the Golden Gate in Jerusalem by the Ottoman Sultan Suleiman the Magnificent in 1541, in which it is said the Ottomans constructed a cemetery outside it so as to prevent the entrance of the Messiah.

So back to the cemetery and the angel depicted above.  In his work tracing the attitudinal changes of the western tradition’s approach to death and dying, Philip Aries describes in The Hour of Our Death (1981: Knopf) at chapter ten, entitled “The Age of the Beautiful Death,” a release from suffering and an end to toil at the end of a life.  In this chapter which has numerous references to literature of the period, including letters and journals from a French family, the writings of the Bronte sisters, the rise of spiritualism and other cultural phenomena from the 18th through the early part of the 19th century.  I will be continuing this post soon.

So, I couldn’t pass up this opportunity for a YouTube serenade, this one with Saint-Saens’ Danse Macabre . . . (Opus 40, first performed in 1875).

©Barbara Cashman  2014   www.DenverElderLaw.org

Whose Death is it Anyway?

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Winter Statue in Berlin

When I was putting together the outline for this post, I thought of the title “a death of one’s own” and so I tried googling that.  I found a video on vimeo from Bill Moyers from 2000.  It struck me that very little in the conversation about assisted dying or euthanasia has really not progressed much.  I attribute this to the long reaching effects of the death taboo.

The Moyers video is about three different persons facing the end of their lives as the result of terminal illness, I mention the first two in this post.  The first person featured was a veterinarian and rancher, Jim Witcher, who was diagnosed with rapid progression ALS.  This brave man allowed Moyers to come into his daily life to film his life as it progressed with ALS.  There was some discussion about his previous “fight” against the disease in its early stages and  he candidly speaks about the progressive and further loss of control he faces with the disease.  Still able to speak, Witcher explained that his ability to speak was already being affected and he explained that his ability to feed himself would be a milestone for some action, but that event passes unmarked by any decision and his illness moved into the next phase.

What is the distinction and where is the line on either side of dying – gradually, in our lives, in whichever way or on whatever terms our life presents itself?  This a theme of the video “A Death of One’s Own.”  Losing control over our lives, our bodies do not respond in ways that our brains and our experience have intended.

His wife explains her challenges in caring for him as the disease marches on. Respirators and feeding tubes offer a means of life extension as Witcher describes it, and those options are ruled out by him.  He states that he wants physician assisted death to hasten the demise, but that is not an option for him in Louisiana.  He notes that he has probably already lost the ability to take drugs that would end his life, to which he may have had access because he was a veterinarian.

When is it that you say “no more?”  Witcher identifies that as total paralysis.  He marks more milestones now, when I can’t do ___ anymore, then I know it will be time to “finish.”  Interesting that this comment is made, is the height of an autonomous choice which ironically involves the assistance of others to honor and to effectuate.  Witcher’s wife and adult children struggle with his stated desire to control his end of life choices.  This goes beyond the refusal of life support.   Euthanasia, according to Witcher’s daughter-in-law, is simply not discussed in their faith community.  The issues are simply not discussed.

Next Moyers goes to Portland, Oregon to visit a 56 year old woman who was diagnosed with a metastatic aggressive cancer.  She tried the chemotherapy which had little effect and she is in hospice care when her story begins.  She describes to the camera her desire to avail herself of physician assisted death, and Moyers notes that she could ask her doctor for such a prescription now.  Both of Kitty’s daughters support her decision regarding PAD.

What I found interesting about the woman who died in Oregon, intending to avail herself of physician assisted death, is that when she asked for the doctor to deliver the life ending medication, one of her children intervened and asked her to wait until her mother’s sibling arrived within several hours. By that time she was no longer able to swallow the barbiturate mixture which was the life-ending medication. Instead, she died within a short time with her family members surrounding her. When asked about whether her mother had the death she wanted, the daughter who asked her to wait responded that she wasn’t sure and there was seemed to be some guilt associated with that response.  Perhaps she felt that her interference with her mother’s wish had diminished her choice over her demise, potentially making it an unpleasant death for her mother.

Of course we never know about these things until we’re put in that circumstance – all the more reason to start thinking about these issues because they will surely face a greater number of people as we baby boomers age.  What I find most troubling about the discussion in the Moyers video is that so much of the discussion is focused almost exclusively on autonomy and control, it is as if no one thinks about control until its lack presents itself as an adversary, when the disease process threatens the human personality’s need for control, or at least the ability to maintain the illusion of it.  In that context, a terminal disease’s biggest threat – other than to the person’s life – is to the sense of control.  What does control have to do with dignity?  That is another question!

This makes me think of Viktor Frankl’s classic work “Man’s Search for Meaning.”  I think this quote is especially instructive here:

“When we are no longer able to change a situation, we are challenged to change ourselves.” 

The Colorado legislature is currently looking at a bill entitled “Terminally Ill Individuals End-of-Life Decision,” about which you can read more here.  Note it is not called “death with dignity” as the Colorado hospice and palliative care community strenuously objects to the notion that the only “death with dignity” is one achieved through lethal medications.  I agree with that observation, and it is interesting to note that the relevant term here for those persons wanting to avail themselves of physician-assisted death is “life ending process.”

Stay tuned for a continuation of this topic and more about Colorado’s proposed legislation.

©Barbara Cashman  2014   www.DenverElderLaw.org

The Expression of Grief as an Essential Human Activity

Mount Hope in Rochester, New York

Mount Hope in Rochester, New York

Say what?! Grief, Barb – isn’t that suffering that we all want to avoid?  Well, not so fast. Yes, I am working my way up to some more posts about euthanasia, and grief and grieving is the middle ground for this passage.  Sadly, I have been unsuccessful in locating any old SNL clips on the internet which feature Gilda Radner as Emily Litella, I’m thinking of her piece about “Youth in Asia.”  I’m an optimist, so I’ll continue to search . . .

Let’s begin this one with a question – What is grief?  My web search turned up a wide variety of things including: keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret; a strong, sometimes overwhelming emotion for people, regardless of whether their sadness stems from the loss of a loved one or from a terminal diagnosis they or someone they love have received; and it seems that grief can be both a cause as well as a result.  This is demonstrated by the verb “grieve” which is the activity of feeling, experiencing grief.  One source noted that the definition of grief depends on things like who we are grieving and when we are grieving and also why. I find it strikingly odd that in the sentence following such broadly appropriate subjective factors, the accepted “stages” of grief are identified.  I am certain that Dr. Kubler-Ross did not intend her “stages” to become the accepted norm for what passes for grief and grieving in this country, but that is what has happened. The reference to these stages  is invariably accompanied by a disclaimer like “while there is no one ‘right’ way to grieve. . . “  but there most certainly is a correct way because we have quantified and objectified this most personal and subjective of human activities!

The fact is, we have precious few recognizable rituals around the expression of grief, and because we lump it under that generic heading of “suffering” we insist that people get through their own stages as quickly as possible so that they can “move on” with their lives.  Odd way of minimizing this feeling that can arise over most any loss, in fact it can be argued that the small losses and how we handle those are good practice for the larger ones that invariably lie ahead.  This is one of the reasons I always insisted on pet funerals when my kids were young.  If you don’t start somewhere by practicing, you just don’t have any life experience on which to draw when you may really need a bit in reserve.

So, why am I criticizing the focus on the stages of grief?  I do not mean this in any way as a criticism of Dr. Kubler-Ross’s groundbreaking work, but rather as an observation that grief has now come to be objectified and quantified such that there are acceptable parameters identifiable by the medical and psychological community.

Sometimes this thinking about feeling can simply go too far.  What comes to mind here is the lost sense of balance.  I am going waaay back here, to the ancient Egyptians and the symbol that has become known as the eye of Horus (as personified by the goddess Wadjet and no, not the video game by the same name. . . . ). You might recognize it, it looks like this:

 

[thank you Wikipedia – you can make a donation to their cause here]

 

So the components of the eye of Horus consist of several constituent senses and also correspond to measurements. Forr my purposes here I am concerned with its association with the six senses: smell, sight, thought, hearing, taste and touch.  Yes, thinking is listed as one of the senses – it is one of our faculties after all.  In our mainstream culture that is so focused on quantifying things, identifying objective reality of a material universe, thinking gets elevated far above its historical position in a more traditional pantheon of human attributes.

I refer to the eye of Horus for purposes of asking ourselves about the place where we find ourselves in this culture with all of our thinking, our information and our never-ending thirst for more.  We have become estranged from uncertainty and questions about which thinking does not provide suitable answers.  We have forgotten how to ask the philosophical questions and how to be with the mysteries. I am not diminishing in any way the information which we now know, I am merely wondering about its proper context.

Death, the end of life and the end result of feeling the loss of another or a part of ourselves – these are  mysteries in many ways that thinking can help us with but thinking is only part of the response, the activity required.  Our over-reliance on thinking has caused us to forget how we honored death and the end of life in previous times. I do not believe this is progress and I find this aspect of the death taboo very troubling – that we cannot even comfortably talk about that about which we cannot really “know” from a thinking sense.  This doesn’t mean we are not equipped to talk about this topic from other perspectives – it just means we are much less likely to be comfortable in doing so.

So, I will end this post with a poem penned by a friend about mystery.

It was written by Richard Wehrman, a co-retreatant with me at a seminar in Rochester, New York last September.  The topic of the retreat was “The Angel of Memory.”  Thankfully, Richard willingly shares his beautiful poetry.  This one is entitled “Visits From the Dead.”

This morning the Dead visit me on

the veranda. We drink strong coffee and

watch the wind raise white waves on the sea.

The Dead do not like to be called the dead.

“That is a word the so-called Living use,” they say.

“We are the ones alive, the ones who are real.”

The sun shines through my companions. I cast

a shadow; they do not. “We are so much clearer than you,

like pure water, like crystal.” If I blur my eyes they

are there, I can only see them with my heart.

They are complete like a jewel, like a chakra,

a whole life from beginning to end.

Later we go exploring together, up and down

the sandy paths by the sea. “We are beings

as you are—as are the trees, the animals, the clouds

in the sky.” And where do you live,

I ask them? “We live here, in this World,”

they say, “where else could we be?”

In the evening I gaze over the palms and orchids,

over a glistening vibrant sea. Everywhere I turn,

living beings look back like raindrops, sands

cast up by the sea. Their vibration is endless, like

looking through rippled glass. We are one

multiplicity, innumberable, inseparable.

 

What if the dead – not our children – are our future?  So, dear reader – here’s to life and being alive and conscious of it!

 ©Barbara Cashman  2014   www.DenverElderLaw.org

Grief, Gratitude and Meaning in Dying

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Denver Botanic Gardens in July

 

Okay, maybe you were looking for an upbeat happy-faced Thanksgiving post from me? Well, I have advised clients and written in blog posts that it is a great time to have “the conversation” about end of life wishes when family members gather for holidays like. . . Thanksgiving! So here is the themed post for this year’s holiday: grief is part of life and so, part of death – whether it is grief around a life change like a loss of a relationship or status or the loss of a loved one’s or the prospect of losing one’s own life.

Why is this so difficult to talk about? No, I don’t mean this as a rhetorical question, rather as a question to ask each other and ourselves – to discuss individually and collectively in our communities.  The time is right for this.  Medical technology has extended our longevity such that some are now seriously questioning the purpose of such longevity.  I’m thinking of my first Dementia and Memory post of Oct. 1, 2014, where I cite the article “Why I Hope to Die at 75” by Dr. Ezekiel Emanuel.  The obvious answer to the question is that death is a great beyond, an unknown for the vast majority of us.  Reminds me of an observation by my favorite ancient Greek philosopher, Heraclitus:

Whoever cannot seek

The unforeseen sees nothing,

For the known way

Is an impasse.

Fragments, #7 at 7, Brooks Haxton, trans. (2001: Penguin).

Is it because the fear of death is nearly universal?  Ernest Becker, the late anthropologist and author of the 1973 groundbreaking book The Denial of Death, seemed to think so!  This fear is based on the “problem” of the body, how to manage our physical existence and its limitations.  There responses to this come in a myriad of forms: religious, spiritual, moral (philosophy), and ethical – just to name a few.

I would submit that we (as in post-modern American culture) are at an impasse in the debate about death, its meaning and the prospect of suffering as part of the dying process.  Evidence of this is clear from the recent death, via means of doctor assistance, of twenty-nine year old Brittany Maynard.  I find it interesting that the subjects of these types of debate are all young women: Karen Ann Quinlan was 22 when she ingested alcohol with the tranquilizer; Nancy Cruzan was 24 when she was in the auto crash that left her in a “vegetative state;” while Terri Schiavo was 26 when she suffered the heart attack which deprived her brain of oxygen for several minutes.  These are some of the women whose fates have informed the course of development of the law concerning advance medical directives.  What impact will Brittany Maynard’s death have on the state of upheaval surrounding the quality of medical care?  Is this question one that applies across the board to us regardless of our age as adults?

In his article in response to Ms. Maynard and the rising calls for doctor-assisted end of life measures, “Doctor-Assisted Suicide Is Unethical and Dangerous,” Dr. Ira Byock observes

American health care is undergoing tumultuous changes and showing signs of strain. A recent Institute of Medicine report attests to persistent deficiencies in care and social support that seriously ill people and their families experience. Witnessing the suffering of our relatives, friends and, for clinicians, our patients, gives rise to moral distress.  It is not surprising that support for physician-assisted suicide is also rising. The age-old dictum that doctors must not kill patients can appear antiquated, out of touch with hard realities, and even heartless.

One way to look at the euthanasia is as some kind of triumph over the tyranny of death, in that means can be selected to hasten its progress so as to minimize suffering.  But this really begs the question – it is the challenge of meaning, in how we live our lives as well as how we choose to die.

We even speak about death in physical terms – as a wall, a door or a window. Is our imaginative vocabulary so limited?  Why is it we have such a difficult time in grappling with the question of meaning in our life – is it because we do not wish to contemplate it in light of its physical end, our mortality? Or is the question backwards?  I find an observation by Miguel de Unamuno in The Tragic Sense of Life helpful here:

In the most secret recess of the spirit of the man who believes that death will put an end to his personal consciousness and even to his memory forever, in that inner recess, even without his knowing it perhaps, a shadow hovers, a vague shadow lurks, a shadow of the shadow of uncertainty, and, while he tells himself: “There’s nothing for it but to live this passing life, for there is no other!” at the same time he hears, in this most secret recess, his own doubt murmur: “Who knows? . . . . ”  He is not sure he hears aright, but he hears.

It seems that a major strand of euthanasia seems to presuppose that there is no meaning in the dying process, that it is simply needless suffering.  This is the question that is not addressed by euthanasia, this is the fear that is laid bare and yet still rejected.

And what if true mastery is not based upon the art of living fully, deliberately and mindfully – but rather on the art of dying well?  Indeed, I would say that is an excellent topic for another blog post.  So if you think gratitude is an important expression of being in the world, whether through your heart or your mind or both – I wish you a Happy Thanksgiving!

©Barbara Cashman 2014   www.DenverElderLaw.org

The High Price of Death Denial

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Fall Colors near Pine

My best friend in Sacramento sent me a link yesterday morning about (Dr.) Atul Gawande’s latest book:  Being Mortal: Medicine and What Matters in the End.  Thanks Liz!   This title is also inspired by a couple other occurrences too – Halloween and Day of the Dead are approaching soon and this weekend I will be going up for a training flight in a spiffy Cirrus SR22.

I tend to equate thinking about death and practicing dying a little every day (letting go of attachments to what appears to be the status quo) with being alive.  Some folks would question my orientation, but I believe thinking about our mortality is far from morose and gloomy, rather it reminds us that our time here is limited and precious!  Death denial has all kinds of costs associated with it.  Because I am a lawyer, I am more familiar with the legal aspects of denying death (it won’t happen to me, you can’t make me decide what I want, etc.) but there are manifold aspects.

So, I’ll get back on track with Dr. Gawande’s latest book.  No, I haven’t ordered it yet, but I did watch the clip from his interview by Jon Stewart on The Daily Show.  I liked the interview, which was a great overview of the present-day dilemma of aging Americans.

What I found refreshing was that Dr. Gawande was looking carefully at how doctors ask their patients questions about health care values, medical wishes and end-of-life choices.  One might think this is common for doctors, but it is sadly quite uncommon, unless you are talking about the palliative or hospice care docs.  Dr. Gawande had personal experience to draw on for his writing – with his mother-in-law and also his father, who went to hospice care.  But there is still much resistance among doctors (even those who would choose hospice care for themselves) to discuss hospice and palliative care with a patient.

A few things came to mind after watching the short clip.  First, I will continue my policy of pressing further when a client states “my son is a doctor, so he can make these difficult choices for me” – with my response that medical know-how does not translate into emotional capacity to make difficult decisions on another’s behalf.  Next, his observation that it is anxiety about our death which cripples us and leads us to bad decisions.  This cries out for attention in the form of a readily available fix . . . .  click here for helpful materials in pdf format from The Conversation Project (I’ve already run out of them at my office)!  Lastly, the importance of advance planning – at minimum a medical durable power of attorney along with a discussion of wishes with the selected agent – is best done when someone is healthy and well, before the scary subject of end of life care is actually on one’s medical radar.  If we can somehow “normalize” this conversation about dying, we can neutralize much of the anxiety around this topic.

Beyond the emotional costs are also the financial and ethical costs.  In the past we sometimes called these measures heroic, but the connotation was misleading at best.  The term used now is “futile.”  What is the definition of “futility” in medical terms?  Here’s a helpful article from the Mayo Clinic with some contextual definitions of the term.  Over the past several years, much has been made of a perceived government agenda concerning “rationing” of care, but is it the government’s responsibility to decide how much or what kind of heath care we receive?  Is it our doctor’s responsibility to decide if we aren’t prepared to make a decision? No and no! It is our own responsibility to decide, for ourselves and to our loved ones, especially when we do not wish either to be a burden or to be tortured.

How do we make those difficult decisions when we are incapable? Well, if we have a medical power of attorney, that is best place to start. We can also execute advance directives to help solidify the wishes we have communicated to our agent and other loved ones.  Our collective inability to have “the conversation” about health care and end of life wishes costs us dearly – both the patient who didn’t choose in advance and our community, which must collectively bear the cost of such care.

So I will close this post with the theme of festivals and holidays honoring the dead, here are a few of them:

  1. Halloween
  2. Memorial Day (originally known as Decoration Day)
  3. El Dia de los Muertos (Day of the Dead) (the Mexican version of #4)
  4. All Saints’ Day and All Souls’ Day (Catholic)
  5. Bon Festival (Japan)
  6. Chuseok (South Korea)
  7. Gaijatra (Nepal)
  8. Qingming Festival (China)
  9. Pitru Paksha (Hindu)

This list is neither authoritative nor exhaustive.  Bottom line here for purposes of this list – remember the dead by honoring life in the here and know and by expressing love to those you care about while you are able (including having “the conversation” and getting documents in place to memorialize it)!

 ©Barbara Cashman  2014   www.DenverElderLaw.org

 

Dementia and Memory: Out of Time, Out of Mind I

Mount Hope Cemetery, Rochester NY

Mount Hope Cemetery, Rochester NY

So I’m back to that rather slippery theme of memory again – this is the first of two parts. The online Merriam-Webster defines memory as: (1) the power or process of remembering what has been learned; (2) something that is remembered; and (3) the things learned and kept in the mind.  This all sounds very quantitative and linear to me, right in line with most conventional thinking about memory as factual recall, that forensic memory which is objectively measurable.  I think the definition of memoria from the ancient Greeks is more useful and inclusive of the human experience.  Conveniently, it also encompasses the non-chronological aspect of time about which I’ve written before – kairos.  We modern Americans come to think of memory in some fairly odd contexts, like computer memory and we often liken what’s in our heads to our personal hard drive as if it were some kind of data storage system – which it is of course in a very narrow sense.  This also accounts for much of our recent “de-mentation” or offloading many of the factual details of our daily lives like calendars, phone numbers and emails to our smartphones.  So what is the nature of memory in our minds? Is the memory of our heads different from the memory of our hearts?

The Atlantic Monthly recently featured the article “Why I Hope to Die at 75,” by Ezekiel Emanuel, physician and bioethicist.  The message he states is one I have offered to clients many times: longevity has a down side, a dark side potentially in the form of a “gray area” of diminishing cognitive capacity, perceived “uselessness” and for many of us, dementia.  I think the article is an important counter point to our death-denying and youth-glorifying mainstream culture that tends to view aging as a long process of descent from some place in the prime of our adult lives, along a journey where things can only get worse.  But this article that states emphatically – 75 is long enough.  This sounds a bit like some of my Baby Boomer age mates – who having lived through a parent’s dementia – proclaim they want an advance directive that has a box which states something like “if I get dementia and need Depends, just shoot me.”  Don’t get me wrong, I applaud Dr. Emanuel’s message on several different levels in which it challenges conventional wisdom and the misplaced faith our culture has in our medical-industrial complex to keep our lives extended (not accounting for quality or purpose), but I think it misses the mark.  Because babies are delivered via scheduled Caesarean section, does that mean we can cash in our chips at a scheduled time as well?  I think not!

We are re-negotiating the tightrope of what we believe we control and what we do not control as it affects our lifespan in our old age (just as in any other stage of life, but perhaps with less baggage).  We have become used to so many answers from the medical establishment that when we have this unprecedented number of elders facing dementia and/or incapacity, we are likely to simply “declare war,” spend lots of money and turn to big Pharma for some “fix” of our “problem.”  The drug companies are more than willing to oblige and provide us with a pill to help assuage our fears, and yet another tool to interrogate the one with the slipping memory . . .  “did you remember to take your pills today?”  It often seems like an elder can’t exist as such without some kind of medical intervention!

Evident in Dr. Emanuel’s insightful article is the denial of the slowing down associated with old age (read the account of the aftermath of his father’s heart attack).  I contrast this with what the late psychologist James Hillman wrote about in The Force of Character.  In chapter nine, entitle “Leaving,” Hillman describes the conflict between his sixty-six year-old patient and her nonagenarian mother, for whom she supervised care.  The patient was continually frustrated with her mother’s inability and seeming unwillingness to be principally concerned with the factual details of forensic-based (often short term because it involves daily functioning) memory.  Hillman observes (at 88) that he saw this mother daughter conflict as exemplifying “the difference between short-term and long-term memory.  It is as if you cannot have both at once.  One has to give way to the other.”  The chapter provides useful insight into the “life review” stage of elderhood which is gaining wider acceptance as a part of life, not just a loss of the familiar ways of doing from pre-retirement adulthood.  I think it is one of the centerpieces of connected and engaged elderhood.   Hillman closes it with the following questions, so often neglected:

Why do the dark days of the past lighten up in late recollection?  Is this a subtle hint that the soul is letting go of the weights it has been carrying, preparing to lift off more easily?  Is this a premonition of what religious traditions call heaven, this euphoric tone now coating many of the worst experiences, so that there is little left to forgive?  At the end the unforgiveables will never be forgiven, because in old age they do not need to be forgiven: they simply have been forgotten.  Forgetting, that marvel of the old mind, may actually be the truest form of forgiveness, and a blessing.

Hillman, The Force of Character at 93.

This observation brings me back to the rhetorical or existential question I posed in my previous blogpost about what is remembering and what is forgetting.  Hillman weaves that question into a life’s span.  I will close this first post with a poem: Walt Whitman’s poem “Whispers of Heavenly Death”

Whispers of heavenly death, murmur’d I hear;
Labial gossip of night—sibilant chorals;
Footsteps gently ascending—mystical breezes, wafted soft and low;
Ripples of unseen rivers—tides of current, flowing, forever flowing;
(Or is it the plashing of tears? the measureless waters of human tears?)

I see, just see, skyward, great cloud-masses;
Mournfully, slowly they roll, silently swelling and mixing;
With, at times, a half-dimm’d, sadden’d, far-off star,
Appearing and disappearing.

Some parturition, rather— some solemn, immortal birth:
On the frontiers, to eyes impenetrable,
Some Soul is passing over.

The Complete Poems of Walt Whitman (1995: Wordsworth) at 328.

To be continued . . . .

©Barbara Cashman  2014   www.DenverElderLaw.org

Aging, Meaning and Memory

Medicine Bow National Forest

Medicine Bow National Forest

This is another contemplative post – so please forgive me.   I am preparing for a retreat on this exquisite topic of memory. . . . !   Since I find the topic of spirituality and dementia fascinating, I have been reading “Finding Meaning in the Experience of Dementia: The Place of Spiritual Reminiscence Work,” written by Elizabeth MacKinlay and Corinne Trevitt (published in 2012).  I especially enjoyed reading chapter ten “Grief is part of Life,” that speaks to much of my estate planning work with elders and their loved ones.  It begins:

Loss of relationship either through death or through geographical separation is closely tied to the meaning of life.  Meaning does not cease to exist because a person is dying; in fact, it is in facing death that it can be possible, perhaps for the first time, to see the meaning of one’s life.

Finding Meaning in the Experience of Dementia: The Place of Spiritual Reminiscence Work at 171.

Is our memory informed by our experiences and accordingly limited to our perception alone, or do we have the ability to further construct the memory so as to make it a memory of our whole being, as opposed to some event recalled which can be verified by another?  Therein lies some of the quantity versus quality aspects of memory . . .  but I am focusing today on this topic of memory in the context of aging and meaning.

So much of our important grief work is pushed aside in our death-denying and youth-glorifying culture.  I think this is a big part of the anxiety and depression and despair that so many of us struggle with in our culture because we do not see or otherwise recognize the inherent meaning of loss of youth and dying and death.

Memory is a phenomenon that is both individual and collective.  So to whom does memory belong or to whom should it be attributed?  What part of cognitive decline implicates memory and what is it that we are talking about when we use this term “cognitive decline?”  This can of course be age-associated and within “normal” limits or it can be identified with a disease process, such as the course of dementia of different types.  How do we distinguish the aging process that occurs naturally and that leads inevitably to our death from that process associated with a disease?  This may seem like a straightforward question – but I think it is far from that!  When aging becomes inextricably linked with decline in a way that is viewed as a disease process, we are essentially denying death, killing it off as the culmination of life and viewing the whole aging process and our mortality as a disease, some kind of shortcoming in our biology. If you think I am exaggerating about his, do a search on Aubrey de Grey and his so-called longevity science. . .

Dementia can further complicate a grief process as well.  Even the term “anticipatory grief” sometimes used for grief for the loss of a loved one with dementia before they die – the loss of relationship and the outward self – implicated the complexity of the grief process and the context for the grieving of surviving loved ones.

So now I will turn to the third aspect of this post’s title – memory – to connect the aging and meaning aspects.  What is memory?  Aldous Huxley wrote that “every man’s memory is his private literature.”  In “The Life of Reason,” George Santayana stated that “memory itself is an internal rumor.”  In this respect, we could say, that the memory belongs to the person.  But what about the memory that we share – isn’t that memory too?

What is it that we see and that we call memory?  In “The Marriage of Heaven and Hell,” the poet William Blake observed “If the doors of perception were cleansed every thing would appear to man as it is, Infinite. For man has closed himself up, till he sees all things thro’ narrow chinks of his cavern.”

So does memory free us from the constriction of our lives or does it enslave us to our experience of things past?

It seems that once again, I have asked far too many questions than could be answered in a blog post (or perhaps even a lifetime?!) and with that said, I’ll conclude with Friedrich Nietzsche’s observation that “the existence of forgetting has never been proved: we only know that some things don’t come to mind when we want them.”   Yes, there will be more on this topic . . .

©Barbara Cashman  2014   www.DenverElderLaw.org

Have You Had the Conversation Yet?

Shadow Selfie

Shadow Selfie

Yesterday morning I attended an informative program put on by the Colorado Guardianship Alliance (of which I am a member) which featured palliative care specialist Dr. Hillary Lum, speaking on Advance Care Planning, Palliative Care and Hospice.  I recently posted a short blog which featured an interactive meeting put on by the Life Quality Institute which featured The Conversation Project.  I returned from the meeting with a helpful booklet that is loaded with end-of-life facts and which can be used to facilitate the conversation which most of us say is really important to have (about end-of-life wishes) but that the majority of us have not yet had with a loved one.  I met with new clients this afternoon and was able to give one of the booklets to them, so I will be able to hear how it may help them have the conversation and communicate wishes with their adult children.  I’ll keep you posted.

By the time you get to be “a certain age” (okay, I’m celebrating a 50-something birthday next week, so please pardon attention), you have most likely had some experience with a chronic or terminal illness of a loved one or a death of a family member that did not die a good death.  Yes, I said good death.  Death is part of life, is contained within life and so I think if we can talk about quality of life we can also talk about quality of death.

Palliative care and hospice care focus on the still much misunderstood concept of quality of life medical care.  Remember the “death panels?!”  I don’t know where people come up with this stuff, but there are folks who think they exist . . .  maybe we’ve watched too many B movies of the sci-fi genre! Here’s a great post by a palliative care doc about those nonexistent faceless federal bureaucrats.  Dr. Lum (getting back to my original topic now) spoke succinctly about the distinctions between palliative care and hospice care.  She shared a great resource called “fast facts” – you can google eperc fast facts and get the Medical College of Wisconsin’s really informative website.  Fast Facts and Concepts provides concise, practical, peer-reviewed, and evidence-based summaries on key topics important to clinicians and trainees caring for patients facing life-limiting illnesses.  It has straightforward descriptions and answers a lot of questions you may not have known to ask about palliative and hospice care and the medical issues attendant to things you might ask your doctor about.

So while I’m on the topic of resources relating to advance planning, the ABA just published its August issue of Bifocal which features as its lead article “Advance Care Planning in a Nutshell.”  Sabatino focuses on the two most basic question we need to tackle early on in the process: (1) Who do you select as a capable, competent and conscientious health care agent (a/k/a surrogate decision-maker); and (2) What kind of information and guidance can I provide to that person and perhaps other loved ones about what I want and what I don’t want in this context.  For some of us, these questions are not so difficult, we may think “my kids already know what I want” or “my spouse is a good mind reader” – but then there is the rest of us!  We may think it’s not good enough to be general and not so detailed about our wishes, that this kind of conversation or documentation requires a fine-tooth comb.  Not so!  While it’s true I recently purchased a crystal ball, I have yet to perfect my skills at predicting the manner and circumstances of a client’s death (hey, wasn’t that an X-Files episode, back a few years?).

One of the reasons that lots of details about end-of-life wishes aren’t really helpful or required – even if we have a chronic illness that limits our life, is that we cannot know all the details around how we would want another to choose in the event we were unable to choose or couldn’t communicate.  Hence, the focus on values and priorities, to let the big picture of what is important to you guide the conversation – and not let it get bogged down in details that will probably never apply.  I think you’re getting my drift now, that it’s a good idea to inform your health care agent about those three aspects of making informed health care decisions: consider the risk, the burden along with the benefit – and how they play out in the context of your values about health care.

I will close with this – while our culture and the American medical-industrial complex has a ways to travel in terms of getting more folks educated about quality of life focused care at the end of life, the Project on Death in America is helping make serious headway in getting better attunement toward compassionate care for the dying.

 ©Barbara Cashman 2014   www.DenverElderLaw.org