Longevity, Caregiving and the Need for Advance Planning

Springtime in Italy

Springtime in Italy

This Friday (April 24, 2015), I will be speaking at the AARP Colorado Caregiving Symposium at the Arvada Center for Performing Arts.  For that event, I’m looking forward to a “talk show” kind of interactive format designed to engage the audience.  One of the topics I will be focusing on which is obviously relevant to caregiving – is about how we can better navigate our longevity.  A portion of that will look at some of the important conversations to have and documents to have in place.

      What is Health Care Self-Determination?

All of us will die someday, but the majority of us will be disabled or incapacitated (temporarily or longer) before we die. This is but one of the “side effects” of increased longevity.  Having the difficult conversation now – with your family members, loved ones, even your health care providers – can make a huge difference in the type of care you receive and the stress and strain placed on your family in the event of an incapacitating health crisis.   Information is key to maintaining one’s ability to decide.  Here’s a link to a recent article in Forbes with Dr. Atul Gawande (author of the recently released book Being Mortal) about how paying more for doing more health care isn’t such a great deal.

Identifying your surrogate decision maker (a/k/a agent under a medical durable POA) is the most important first step. Before you name this person and a successor agent, you must have a conversation with them to make sure they are willing and able to perform this important job in the even the need arises.  For them to perform this job, the person giving the MDPOA, the principal, must give some important instructions to the named agent and successor agent. Medical Durable POAs, along with other documents, are effective ways to manage uncertainty, to identify the people you want to make health care and other personal decisions for you if you are unable and to give them instruction about what to do.

       What About a Medical Durable POA?

An MDPOA is a simple, inexpensive, and reliable way to arrange for someone to make health care decisions for another (i.e., give informed consent) in the event the principal is, in the opinion of the health care provider, unable to give informed consent.

The types of decisions an agent can make can be broad or narrow, general or specific and the agent’s authority is typically set for the power of attorney document.  I am in favor of powers that confer broad authority on an agent.  This is for two reasons: it requires the principal have a conversation with the agent about what the principal wants (a conversation about these matters is necessary); and there is little likelihood for confusion about what an agent can do.  I tend to think that a short document is best, given the amount of time that health care providers spend with their patients, it is not a great idea to draft a long and complicated document for this purpose.

       Why Do I Need to Have This Conversation? I Really Don’t Want To!

The cost of death denial in our culture is high.  End-of-life situations involving elders are often fraught with emotionality and conflict, and death’s finality does not often bring peace or resolution to a conflict that involves death and grief for a loved one.  Beyond the emotional costs are also the financial, psychological and ethical costs.  If you haven’t named an agent or made any advance directive or other statement of your wishes at the end of your life (when you are not able to decide for yourself), someone else will be charged with making decisions for you, and this is where we have seen much tragedy and conflict result.  In the past we sometimes called these measures heroic, but the connotation was misleading at best.  The term used now is “futile.”   In addition, having the conversation helps ensure that others know of the existence of any advance directive you have.  That is an extremely important detail if one becomes incapacitated.  Here’s a good New York Times article about this topic.

       Tell Me More About These Health Care Documents. . .

If you want to avoid this medical care and personal care related kind of stress and strain on your loved ones, consider the following documents:

  • Medical (Health Care) Power of Attorney
  • Advance Directive
  • CPR Directive (DNR, a medical document which must be signed by a doctor)
  • MOST Form (recently updated in CO, for elderly, chronically or seriously ill persons)

The Colorado Medical Treatment Decision Act is found at Colo.Rev.Stat. 15-18-101 et seq.  The statute allows any adult with “decisional capacity” to execute a declaration.  “Decisional capacity” is defined in the statute at 15-18-103(6) as follows: the ability to provide informed consent to or refusal medical treatment or the ability to make an informed care benefit decision.  Note that the statute speaks about medical treatment decisions and also health care benefit decisions. Yes, our Colorado statutes cover all the bases here.  Colo.Rev.Stat. § 15-18.5-102 and 103 relate to the health care power of attorney for medical treatment, §15-18.5-104 and 105 (the statutory form for naming the surrogate) allows for appointment of a surrogate decision maker for health care benefits.  Why are these documents so important to have in place?  So that you can name a person in charge and know they will be able to perform an important job for you if you need their assistance.  If you don’t name anyone, there is a vacuum, which can result in a decision or lack of one, by a “committee” of family members.  If there is no MDPOA or the MDPOA does not work as intended, instituting guardianship proceedings in probate court may be necessary.

What If I Need Help With My Doctor Visits to Keep Track of All the Information?

In our fee-for-service based health care system, many patients can be overwhelmed by the choices, decisions and amount of information which must be managed effectively to exercise one’s self-determination in medical care. This is often the case with elders who have suffered a health crisis or have an illness which will affect their mobility or ability to live independently.  Consider enlisting the support of another set of eyes and ears for this purpose, in the form of a health care advocate.  A health care advocate is not only another set of eyes, ears and brain focused on medical decisions, the advocate can provide reassurance and companionship to help ensure an elder gets appropriate care, gets answers to questions and otherwise ensure understanding concerning health care services that are recommended.  If you are thinking about getting a health care advocate, make sure it is someone whose judgment you trust and is someone who is not afraid to ask questions or stand up to authority in unfamiliar or stressful situations.

Now that I’ve returned from my spring pilgrimage, I’m back on schedule for weekly blogposts.  Please stay tuned.

 ©Barbara Cashman  2015   www.DenverElderLaw.org

 

 

Elderhood, Exile and Pilgrimage – part two

Mount Hope Rochester NY 078

This is a continuation of my post from last week. . . . (and also a celebration of three enjoyable years of blogging on this WordPress website of mine)!

Pilgrimage is also a way of separating oneself, often in the company of other like-minded people, from the everyday and the ordinary, to discover what is there for us to find beyond or underneath our everyday existence and its often commonplace occurrences and numbing familiarity.

The pilgrimage, which I characterize here as beginning with exile, can itself be a journey to wilderness as well as from it, depriving us of all of our devices, props, comforts and habits of doingness.  What we were previously unable to see in our life, through our way of being (often obscured and covered over by all our ego-defenses) can be laid bare and render us  . . . . exposed and vulnerable.  This is how many of us experience a health crisis (young or old) and this is how meaning can creep in.  It seems to require the emptiness of that wilderness of exile, for there is no place for it to be (be experienced) when to rest of our life is already full or otherwise protecting us from the uncertain, the unknown.

Meaning can move through our lives in a qualitative way, even when it may or may not move in a chronological way.  I’m thinking here of the meaning, what Elizabeth MacKinlay refers to as the movement from provisional to final meanings.  The Spiritual Dimension of Ageing (Springer 2001) at 153-65.

So, what then is meaning, which seems to be the outcome in some respects of the movement from exile toward return (or the movement between them) which could be characterized as a ritual of pilgrimage?  Sometimes meaning comes from waiting in the desert, in a darkness of unknowing with an emptiness, a lack of the expected and familiar of the commonplace having been taken from us.

Here is where I return to the place where I started – the quote from Thomas Merton about wilderness, discovering our wildness in our waging of the battle against despair.  I turn now to a faithful companion, Viktor Frankl’s book Man’s Search for Meaning:

There is nothing in this world, I venture to say, that would so effectively help one to survive even the worst of condition, as the knowledge that there is a meaning in one’s life.  There is much wisdom in the words of Nietzsche: “He who has a why to live for can bear almost any how.

Man’s Search for Meaning (Washington Square 1969) at 164.

On the topic of pilgrimage as a decidedly anti-modern undertaking, I think of the mysteries which we often take for granted with the shrug of our shoulders.  Take broken heart syndrome for example, an otherwise unexplained phenomenon in which an otherwise healthy surviving spouse of a long term marriage dies within a year of their life partner.  Sometimes it is too difficult to discover (as suggested by Dr. Frankl) the meaning in our suffering.  What about pilgrimage and its relation to healing?  Retired anthropology professor Michael Winkelman writes this about religious healing:  “The linkages of symbols and physiology provide therapeutic effects in religious healing by aligning individuals with cultural expectations, values and beliefs. “  He notes further that the basic mechanisms of symbolic healing involve the following processes:

  • Establishment of a generalized mythic world;
  • Persuasion of the patient to particularize his or her problems within that mythic world;
  • Attachment of the patient’s emotions to symbols from the mythic world; and
  • Manipulation of those symbols to assist in emotional transactions.

Supernatural as Natural: A Biocultural Approach to Religion, M. Winkelman & J. Baker (Pearson 2010) at 171.

Metaphors have the power to heal and can themselves serve as a vehicle for the pilgrimage, for a return to meaning.  A return to meaning? Yes, I would make the observation as one who is rather fond of springtime pilgrimages to distant places.  Sometimes all we need is not a change of scenery but rather a change of the eyes through which we see our worlds.  I’ll quote next from an observation raised by the English poet William Blake and discussed by (another English poet and commentator) Kathleen Raine:

For Blake experience was not a learning but a forgetting (and Wordsworth too so presents it), a loss of vision, a narrowing of consciousness, or as Blake puts it, a falling into the “deadly sleep” of materialism, to become oblivious to that beauty seen with the eyes of innocence.

 K. Raine, The Underlying Order and Other Essays (B. Keeble, ed.) at 67.

Perhaps the pilgrimage of living and of elderhood, when experienced as a movement from exile to return, is essentially a tapping into the human story, the meaning, which we already know – but have managed to forget or lose sight of along our way, our life’s path.

©Barbara Cashman  2015   www.DenverElderLaw.org

 

Elderhood, Exile and Pilgrimage – part one

Desert Monolith

Desert Monolith

I first wrote “old age” in the title instead of elderhood, but thought better of it.  “Old age” can refer to something that is measured chronologically, while “elderhood” is more of a qualitative developmental stage I think. . .

Getting old(er) slows many of us down and sometimes can lead to a different kind of discomfort and pain – that of stillness and silence, sometimes born of simply slowing down and appreciating solitude, sometimes it is from being alone.  How many of us insist as we age that we shall keep on doing just as we have done before, it is the mantra of our youth-glorifying culture to always be active, participating, making, contributing, talking and so on.  But sometimes, we can find ourselves in a desert of vastness, alone and, as is appropriate for a desert, “deserted.”  This unfamiliar place and mode of being is so unfamiliar to us, it is often a frightening wilderness.  How can we go on in this strange place and why would we want to go on?  Thomas Merton observed in “Thoughts in Solitude:”

To wage war against despair is our wildness.

Perhaps we need the wilderness of desert, of that place of exile, if we hope to be able to discover our wildness.  This is what I am referring to when I write about exile, the wilderness of the unknown.

I recently met with someone who chose to return to Colorado to live.  This person had retired from the foreign service and had a foreign-born spouse and had not lived in Colorado for more than probably sixty years.  It seems that our sense of place, of belonging somewhere, is often inextricably tied to the movement we experience in our lives, along with the ancient mythological notions of exile and return.  So too our sense of belonging is often based on a comfortable way of being in the world that serves the limited and limiting needs of the ego-self (and not the higher self).

Next month is National Poetry Month, so I’ll start a bit early with this haiku from Saigyo:

So loath to lose

What really should be loathed:

One’s vain place in life,

We maybe rescue best the self

Just by throwing it away.

From Sanka-Shu (Lafleur transl.) in The Karma of Words: Buddhism and the Literary Arts in Medieval Japan (1983) at 100.  The transition to old age or elderhood can be a journey of years, a waking up in a strange and unfamiliar place, or even a drawing of a curtain of darkness between what-once-was-and-is-no-longer and a present existence which simply cannot be accepted.  In the latter place of being I am taking about the deepest level of youth glorification that can often continue during a person’s old age, when we focus exclusively on the losses sustained by our “doing” and otherwise capable self.  Death denial would seem merely to be an extension of such thinking.

Okay, there’s elderhood, old age and exile . . .  so what about pilgrimage. . . ?  It just so happens there are more than a couple springtime pilgrimage festivals if you will: Passover, one of three pilgrimage festivals on the Jewish calendar and Easter holy week, a pilgrimage time for Catholics, Eastern Orthodox and other communities.  Pilgrimage is in many respects a traditional ritual which is anti-modern in experience for many people who choose to make a pilgrimage.  Note how interesting is the common Indo-European roots of these three words: holy, whole and heal.  Definitions for pilgrimage include:

A journey to a shrine or other sacred place;

Journey or long search made for exalted or sentimental reasons;

Any long journey, especially one undertaken as a quest or for a votive purpose, as to pay homage.

And these are just a few!  In many ways, exile can be a form of liberation – whether we choose to see it that way is up to us of course (as is how we see anything).  Reminds me of the quote about seeing the world as we are, not as it is, which on this occasion I’ll attribute it to the poet and mystic William Blake, who also wrote:

Mysteries are not to be solved. They eye goes blind when it only wants to see why.

In many ways exile can be a form of liberation – whether we choose to it that way is up to us of course.  Is this perhaps why so many pilgrims go on their trek to begin with?  I’m think if many modern pilgrims walking along the Camino, making the Hajj to Mecca, or traveling to Chimayo, New Mexico – and many other places and paths.

Please stay tuned for part 2 next week. . . .

©Barbara Cashman  2015   www.DenverElderLaw.org

 

Advance Health Care Planning and the Death Taboo

Summer Flowers

Summer Flowers

Early on in my blog on this website, I wrote a post entitled Law as a Healing Profession, which included a discussion of a law review article by Mark Glover, author of  “A Therapeutic Jurisprudential Framework of Estate Planning.  So I turn again to the big picture of our culturally-accepted death denial and look at the context for some documents that lawyers often prepare to help clients cope with this uncertain enterprise known as life.  Yep, there’s another law review article I’m considering as well – this one entitled “In Denial: The Role Of Law in Preparing for Death,” by Barbara A. Noah and published at 21 Elder L.J. 1(2013) and which you can read here.

Many baby boomers are facing end of life questions and responding with a conversation with family members or loved ones about their wishes.  This is a very positive step.  The conversation must be had many times over the course of our lives, so we know what we want and communicate those wishes to others.  There are different motivations for these important conversations, which are often the result of unsettling experiences around an elder parent’s death, and which compel a person to do things differently.  These conversations are important and invaluable for families and communities, however there is still much death denial.  For a different treatment of the question of death denial, read “Confronting the Cadaver: The Denial of Death in Modern Medicine.” Death denial is found in many places in our culture, it is particularly prominent in our technology centered medical model.  How we have come to be estranged from death has much to do with the fact that most of us don’t have much experience with family members dying at home as this is typically left to the medical professionals to manage, which separates us from the passing of a loved one and what we often feel as our helplessness in the face of encroaching end of life.  The fact is, no one, no institution or technology can protect us from death.

Whose denial is it anyway?  It isn’t just a modern American phenomenon – the death taboo has relevance in many aspects of other cultures and traditions.  Wellness, disease and dying can also be understood in the broader context of medical anthropology, which often informs thinking around the dying process and death.

But even amidst the further study of death denial and criticism of its power to alienate us from life – has much really changed since Ernest Becker’s groundbreaking 1973 book The Denial of Death,  where Becker attributed the materialistic high-tech nature of modern life (I would call it post-modern, to be more precise) that left us in the shallows searching for the meaning, the missing depth of life in the context of inevitable death.  Fear and anxiety are like sharks there in these shallows, terrorizing many of us into a state of helplessness and feeling out of control.  It is one vicious cycle.  In our autonomy-valuing, action-based view of choosing what our lives are, isn’t death the ultimate indignity, particularly when it comes at the end of a disease which we may view as being one that robs one of autonomy and dignity.  Yes, I’m thinking of the ill-fated “death with dignity” bill that made it to a second reading in our legislature in Colorado.  The whole idea behind the “dignity” described in that proposed legislation was to preserve the dignity of a person’s ability to choose, to do something in response to the indignity of disease and its quality of life robbing advance.  This is human dignity that is focused exclusively on the “human doing” and not the “human being” so to speak!

Whose death is it which we confront?  Can we really be present for another’s death if we don’t really know how to do that?  Here’s an article from a nursing journal about death anxiety.

There are many other interesting developments taking place in many communities across the country which respond to the alienation from death by making it part of our lives once again.  I’m thinking here of home care for a recently deceased person, a DIY funeral care in one’s home as well as wider involvement of those who have come to be known as “death doulas” or midwives to the dying.  You can read a recent New York Times article on this topic here.

I’m sure I’ll be writing more soon about how many of us are reclaiming the use of ritual around end-of-life care and the dying process and also the re-sanctification of the dying process…

©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

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?

denver elder law

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?

denver elder law

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

arapahoe county probate

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