Deathbed Ethics, Proposition 106 and Remembering How to Die

Closed Shutters

Closed Shutters

We have forgotten how to die.  We have forgotten that it is death, as part of our life, which makes us human.  Death is just like the rest of our life – unpredictable and subject to constant change. That is what we have forgotten.  We have become obsessed with our identity and being “in control,” in such ways that support our limited notions of autonomy.  This is superficial, to say the least and I don’t think it has anything to do with preserving anyone’s human dignity.

In Proposition 106, physician assisted death (PAD) or physician assisted suicide is put forward as a “right” to be asserted by a limited and defined class of individuals suffering from a terminal illness who are not expected to live for more than six months.  But wait, this sounds like qualifications for a hospice script – doesn’t it?  Have people who are advancing the recognition of this “right to die” fully explored the parameters of hospice and palliative care?  I think many have not.  It is much simpler, much more straightforward and slogan-empowering to clamor for a right than it is to take a “wait and see” approach – which is what most of us end up doing anyway. Why do I bring up palliative and hospice care in this context? Because I think the need to advance any “right to die” here is superfluous to the already existing but not well-known by the public services of hospice and palliative care health professionals.

In my previous posts, I mentioned the 1997 U.S. Supreme Court decision of Washington v. Glucksberg, 502 U.S. 702, 737 (1997) and I want to follow up just a bit on that decision and its wake.  I’m thinking particularly of Justice O’Connor’s concurrence, referring to pain management palliative and hospice care:

In sum, there is no need to address the question whether suffering patients have a constitutionally cognizable interest in obtaining relief from the suffering that they may experience in the last days of their lives. There is no dispute that dying patients in Washington and New York can obtain palliative care, even when doing so would hasten their deaths. The difficulty in defining terminal illness and the risk that a dying patient’s request for assistance in ending his or her life might not be truly voluntary justifies the prohibitions on assisted suicide we uphold here.

The “right to die” in terms of PAD would appear to be promoted at the expense of the prospect of any effective management of pain.  The further juxtaposition can be seen in these two articles by leading legal scholars: Robert Burt’s “The Supreme Court Speaks – Not Assisted Suicide but a Constitutional Right to Palliative Care,” in 337 New England Journal of Medicine 1234 (1997) and Erwin Chemerinsky’s “Washington v. Glucksberg Was Tragically Wrong,” in 106 Michigan Law Review 1501 (2008).

So why do I write another post about Prop 106? Because the “right to die” as it concerns a patient’s right to end their pain . . . is simply too misleading.  Terminal pain management, about which most people want to believe this proposed legislation concerns itself – is another matter separate from “the right to die.”  This is borne out by the Oregon statistics from 2015 which I referred to in my previous post.

Let’s set the record straight here.  The information collected from Oregon about those persons choosing to fill the prescription for the life ending medications did so based on their diminished enjoyment of life, their loss of autonomy, and their perceived loss of dignity. A surprisingly small number of people mentioned “inadequate pain control” as a reason to choose assisted death from a physician.  Why might this be that pain control factored in so small a number of responses? We don’t know because the statistics available don’t offer further information.  But I think it is not a stretch to conclude that most of those folks choosing to get a scrip filled for lethal medications already had their pain pretty well managed, thanks to hospice or palliative care.

The real reasons for these folks to get the medications was to manage the psychic pain of living at the end of their life, in which their terminal illness compromised their ability to live independently, autonomously and with the dignity with which they had previously known.  This is a qualitatively different kind of pain! This pain may be incidental to the “pain of dying” but it is most certainly a pain of living, living with the uncertainty of what challenges tomorrow will bring.  We have simply forgotten this important detail!

What kind of patient autonomy do we want to protect as a matter of law and public policy? I think we need to be clear about what this law would change and how it would work, and not to be dazzled by the shine of a new “right” that has little to do with the context – medical, legal, ethical or psychological – of how such a right would be exercised.  If this Prop 106 is really about saying it is okay to take one’s own life (I don’t even like saying “commit suicide” because it is fraught with moral implications that further perpetuate the underlying loss of the person’s survivors), then let’s be clear about that.  I believe that is the implicit underlying message, but few people are comfortable with looking much under the surface of the legislation and its long-term unintended implications.

We are talking about the pain of living a life without the independence and autonomy to which we had grown accustomed and the terminal disease or condition robs the patient of that dignity of autonomy.  I will be the first to state I am not equipped to decide for another when their terminal pain has reached such a level that palliative or hospice medications will not suffice to manage the pain.  But I think the pain we are talking about is not the physical pain, which palliative and hospice care providers have become experts in managing, no we are talking about the pain of living a life, the end of which is one “we have not chosen.”  It is implicitly stating – I do not want that challenge and I choose death instead.  Let’s be honest about that choice and our ability to choose it!

In some important respects, Prop 106 presents essentially a right to die versus a right to hope.  If we are in the midst of a terminal illness, rapidly advancing in its ravages of our bodies and our abilities to function independently, we are much less likely to give up hope if we feel supported, if we are not made to feel as if we are a burden on others.  Here physician assisted death resembles the choices underlying suicide as they vary in number among different cultures across that world.  Suicide has been characterized by Durkheim as related to sociocultural factors and in particular the integration of a person in family, economic, political and religious life.   I posit that we ought to be looking to each other for assistance, for hope, especially in the face of imminent death, and not be so eager to show the door to those of us who feel they have become a burden or simply want to “choose death.”

© Barbara E. Cashman 2016   www.DenverElderLaw.org

Elderhood and Winter As Life Stages

 

Siennese Waters

Siennese Waters

I would like to wish everyone a Happy New Year.  Instead of another post written by me, I am simply closing this last post of 2015 year with a quote from the nineteenth century Scottish author and poet George Macdonald, from his book Adela Cathcart:

The winter is the childhood of the year….It is as if God
spoke to each of us according to our need: My son, my
daughter, you are growing old and cunning; you must grow a
child again, with my son, this blessed birthtime.  You are
growing old and selfish; you must become a child. You
growing old and careful; you must become a child. You
growing old and distrustful; you must become a child.
are growing old and petty, and weak, and foolish; you
become a child – my child…

May this quote, this observation of the season, assist each of us in focusing on and appreciating  our inward state of affairs, and not just the easily recognizable outward, external and material world.

© Barbara E. Cashman 2015   www.DenverElderLaw.org

 

 

Autopoiesis in Language and Meaning

Mes Belle Ondines

Mes Belles Ondines

 

I will begin this follow-up to my previous post with revisiting a definition of autopoiesis:

Planetary physiology is the autopoiesis of the cell writ large.

From Margulis and Sagan, What Is Life? (U. of California Press, 2000).

So the autopoiesis of self-production is a multi-layered process in which there are many different types of connections, depending on how and where we assign boundaries.  Do we see the aliveness beyond our own selves? Where our own boundaries of being are and who or what do they serve?  Two rhetorical questions which bring me to an examination of the nature of inquiry and the function of language . . . .

In the first chapter of Metaphor and Reality, Philip Wheelwright sets forth an equilateral triangle with the letters O (object), S (subject) and L (language) at each of the vertices, which he identifies as the “epistemological triad,” serving to illustrate the media of the formation of what might be called reality.  How we talk about reality, in terms of our participation in it, just as we participate in our own autopoiesis, is not simple to identify or describe when subject and object seem to change and the vertex for language is broad indeed.  How we come to describe this life each of us lives is no simple undertaking!

Further complicating this matter is looking at autopoiesis in the context of human consciousness, where autopoiesis is both a process as well as a presence, and the participation in our own autopoiesis is also participation in that of the autopoiesis of a larger context – a community, an organization or “the world” – which is constantly changing, evolving developing and if we acknowledge the evolutionary process of linear time,  this autopoiesis is constantly developing higher order structures.  This reminds me of Heraclitus’ observation – you can never step in the same river twice!

Sometimes we are invited to participate in something – before we know what it is or who it is that is being invited.  Often we are unfamiliar with the invitation and what it asks of us.  It is not known what it is – an event, a practice, a task, a knowing, an unknowing, a dance or simply play.  It seems that this participation is often like play, akin to a kind of music (which is older than language) that moves through us.  Makes me think of a previous blogpost about music, memory and dementia!

As with autopoiesis (and with the emptiness which is required for the process and which I described briefly in the previous post), within music and dance there are empty spaces, pauses, rests, hesitations – all of which serve to punctuate the content, organize the flow of expression and provide its beautiful uniqueness.  It strikes me that this is akin to the emptiness, the absence of something which the process of autopoiesis is dependent upon which I described in the previous post.  Sergius Bulgakov aptly noted:

      Creation is nothing that came to be.

In our autopoiesis, language is undoubtedly part of our creation, notwithstanding its essentially paradoxical nature of what and how “it” communicates, and which also means it can be revelatory and mysterious – just as it can be more literal and descriptive.

So back to my theme here about autopoiesis and that emptiness, which I would identify as the “longing” which keeps us moving through this life, in search of.   Perhaps here is an opportunity to look at two aspects of this longing, this quest of autopoiesis: for both knowledge and meaning.  Knowledge is defined by Google as: (1) facts, information, and skills acquired by a person through experience or education; the theoretical or practical understanding of a subject; and (2) awareness or familiarity gained by experience of a fact or situation.  This knowledge is essentially part of the world of the intellectual world, its academic nature is a collective and ongoing acquisition.  As such it is a community enterprise, one that builds upon shared connections and information and advances as a field.

Meaning, on the other hand, is not so easily defined for my purposes here. . .  Google’s definition offers this for the noun: what is meant by a word, text, concept, or action; and this for the adjective: intended to communicate something that is not directly expressed.  The root of meaning is from the German and the Indo-European root of the word is the same as that of mind, or the element of a person that enables them to be aware of the world and their experiences, to think, and to feel; the faculty of consciousness and thought.  Meaning, then, is the domain of the person and is necessarily constructed in relationship to the world and in particular to the world of experience.

These two aspects of knowledge (acquisition) and meaning (awareness) are connected and ought to be connected via autopoiesis although autopoiesis might not necessarily require the latter, but then I think of Nietzsche’s quote here: He who has a why to live can bear almost any how and would immediately reconsider that observation!  The connection between the two is manifold and one without the other is folly.  The more objective, spoken, literal and objective knowledge which is shared and makes so much of interpersonal communication possible is inherently rational and logical.  What often allows the understanding to be readily shared however,  is its rendering – which is that which means there is no life force within it and is devoid of that subjective quality of “spirit” in that it is an agreed upon construct.  Meaning is subjective and personal, it may come from the unspoken language of gesture, ritual or symbol, and it also arises from our human yearning for a language of understanding, of experience , for what lies beyond words, the emptiness required for autopoiesis.  “Significance” here is as unique as each one of us in any particular moment.

To come back to this clearing away, the emptiness of which is required in our  autopoiesis, I am reminded how the creating – or “allowing” is perhaps more appropriate – of empty space is essentially the maintaining of space for openness, possibility and creation of a new self.  If the stepping back and allowing for the creation sounds both like a process which is part of autopoiesis and also a spiritual practice, that is precisely the connection I make here.  The Jewish mystical term for this is known as “tzim tzum.”

Knowledge and meaning are entwined in meaningful ways and they need to be connected – otherwise the rational or logical knowledge is barren of any aliveness, spirit, or any significance beyond its desiccated literalness that can establish its connectedness with the rest of the person and with the human community and the autopoiesis of the world.  Stripped of any “need” for meaning or even any context for it, beyond the simple denial of any existence of meaning, we have what often appears in our present post-modern culture of death denial and questioning whether there is even any “need” for a meaning of life.  This form of “progress”” is an objective materialism that pervades our thinking about scientific “progress” and results in an intolerable reductionism, unless you are quite satisfied with that small black box of what might pass for “reality.”

©Barbara Cashman  2015   www.DenverElderLaw.org

The Grail Question Continued – What Ails Thee?

denver elder mediation

A Garden Near Assisi

 

[Note – this post was published on August 19, but it didn’t make it into my migration to a new server. . . ]

This post is a continuation of my previous post about elder and probate mediation and obstacle identification.  The first grail question I examined was “what ails thee?” and it is one which I would like to explore in depth a bit more in this post.  What I am looking at in particular in this post is the larger function of seeing that is implied in the question above.  What is it that we can see about another, understand about the other’s situation from seeing them and encountering them in a question such as this?

The question is simple and seemingly straightforward, but it certainly goes beyond the obvious and the superficial – but that begs the question.  What is seeing, what is our ability to use our eyes, our sightedness, to encounter another person – especially one in distress?  Sometimes, in this culture that distrusts anything that can’t be readily explained or measured or understood at some level, we mistake the act of using our eyes for the ability to see.  What I mean by using our eyes is the sensory act of using our eyes, as sensory inputs to inform our understanding of the world.  What often happens, on the “did you see that?” transactional level of human communication is the confusion of our visual sense of seeing for its sensory utility for its own sake, as if the sense was something generic, that anyone with eyes could see in the same manner.  If this sounds farfetched, I will use the example of biomechanics, a popular idea of how the human “machine” works.  Certainly, if we are all machines then our standard issue equipment functions in similar ways, right?  Well, I’m afraid this is the dead end of the reductionists, and I’ve never been tempted to travel down that path.

So this sense of seeing, or rather more appropriately – the use of the eyes for navigating our environment, often amounts to an act of seeing which serves only to separate us from each other and our world.  This is the seeing described above, that which is focused on the material, visible and the “objective” if you will.  This is what is normally understood as the typical and usual way of seeing in our everyday world.  But this is not so for all of us. There are other ways of seeing in addition to or beyond the use of the eyes.

Here I think of the late teacher, author and a leader of the French Resistance, Jacques Lusseyran and I thank Mark Patrick for telling me about his autobiography, And There Was Light.  Lusseyran was left without sight in either of his eyes as the result of an accident at school.  His autobiography tells the story of his work as a leader of the resistance in Paris, sought out because he was blind, as well as his time spent at Buchenwald.  For my purposes here, in the context of the first grail question, I am looking at his posthumously published work Against the Pollution of the I (2006: Morning Light Press).  In the chapter entitled “The Blind in Society” he writes: “Blindness has shown me a space other than the physical one, which only serves to separate me from them and them from me.  This is the space where the stirrings of the soul and the spirit come into being . . . Thanks to blindness I learned to read many signs that came to me from others, and that usually escape the notice of the seeing.”  Against the Pollution of the I, at 46-47.  I find this observation most refreshing in the way it challenges the superficial nature of seeing things and mistaking them for what they appear to be on the surface.  It also leads to a conclusion that many of us “sighted” persons are lazy in that we are accustomed to relying on our sight to inform us of certain things in a certain manner and we mistake this surface reality for “all there is.”

Lusseyran’s questioning of the conventional utility of the sense of sight goes further.  In another chapter entitled “Blindness, A New Seeing of the World,” he refers to sight as a very useful tool and those who are deprived of it as suffering a heavy loss.  But he looks at the senses in a holistic and integrating way, noting that the loss of one sense can allow for the development of another.  Than he makes another observation: “But now we are faced with a great difficulty, for seeing is a superficial sense.”  Id. At 54.  He astutely observes that while the eyes can help us immensely, we should not mistake the tool of seeing with the eyes for its utility alone.  He goes so far as to state that without a willingness to go beyond the superficiality of sight, the seeing beneath or beyond  the outer surface, no true cognition is possible because we are locked into insisting that the tool itself is the purpose of sight.  The beautiful metaphor he uses to illustrate this inadequacy of limiting sight and seeing to the act of visual collection of information is the act of naming, knowing and thereby seemingly knowing the unknowable because . . .  we have seen it.  He identifies this rightly as idol worship.  Id. At 59.

What is our sight, our willingness to see another?   What is our ability to know another person for?  It strikes me that a function of seeing must be, as Lusseyran observes, the ability to clear away the noise, debris and clutter from our minds so that we can truly think about who we see and what they mean to us.  “What ails thee?” can be a mirror for our own suffering and inadequacy to see ourselves reflected in another person.

There is more to us than our visible exterior, our “clay.”  The late John O’Donohue has written beautiful poetry which speaks about our clay.  Another writer has observed this about our clay:

. . .   we are shaped and molded by what we once were and what we will become.  As the ultimate spiritual treasure, the spark of knowledge that inspired human faith becomes an internalized knowledge that will erase temporal history and return us intact to the primordial self.

John Herlihy, “Profile of Unfinished Man” in Psychology and the Perennial Philosophy, at 122, Samuel B. Sotillos, ed. (2013: World Wisdom).

This examination of what constitutes “seeing” in the context of the first grail question just might be followed by a similar pondering of the second question. . . .

©Barbara Cashman  2015   www.DenverElderLaw.org

 

Funeral planning, disposition of remains and the importance of “The Conversation”

centennial probate lawyer

Italian Marble

Last Sunday I presented to a lively and engaged group at a local church on the topic of health care self-determination.  This post is a bit of a follow-up to that conversation on the enduring topic that “it is never too soon to have ‘The Conversation.’”  The best approach to getting these matters in order is to have a conversation with loved ones about wishes, which are then solidified by the documentation.  The documents are often meaningless if people don’t know of their existence or the context for the expressed wishes!

These topics seem relatively straightforward, right?  Well, I got the idea for writing this post initially as a result of a discussion that took place on one of my listserves.  It is one of those situations where “the law” and how things work out there in the outside world don’t quite sync.  The question concerned a situation in which decedent stated her wishes to her child that she wanted to be cremated, but the mortuary told adult child that, without anything in writing from the decedent stating her wish to be cremated, they would need to contact and get approval from decedent’s other children to get their joint approval for cremation.  It would seem that the funeral director wanted to follow the old law “next of kin” even though there was a statute in place that covered this issue. . . .  There was a good discussion about this topic and so I thought it was worth writing about.

Defining Death

       You might think this is a straightforward proposition, but it is not, as I have blogged about previously in a post about “brain death.”  The only legal and medical definition of death in our country came about as a result of a uniform law – the Uniform Declaration of Death Act (UDDA).  It was drafted in 1981 by a President’s Commission to study brain death and was approved by both the American Medical Association (AMA) and the American Bar Association (ABA) shortly after its publication.   The UDDA offers two definitions for a legal declaration of death: (1) the irreversible cessation of circulatory and respiratory functions; or (2) the irreversible cessation of all functions of the entire brain, including the brain stem.   The most common type of death is the first one and you can see how the second definition courts controversy, especially given advances in neuroscience and further advances in measuring the occurrence and quality of brain activity.  States have adopted the UDDA, many with their own adaptations of the second definition.  In Colorado, C.R.S. § 12-36-136 provides:

(1) An individual is dead if:

(a) He has sustained irreversible cessation of circulatory and respiratory functions; or

(b) He has sustained irreversible cessation of all functions of the entire brain,

including the brain stem.

(2) A determination of death under this section shall be in accordance with accepted

medical standards.

Death in Colorado encompasses the entire brain, not simply some aspect of brain function.  But the treatment of brain death is inconsistent and some argue that the neocortical death (part of the brain believed to contribute to consciousness) is more appropriate than “whole brain” death and  may better address neurodegenerative disorders that can lead to steep functional decline, particularly in the elderly.  This is an evolving determination, as addressed in (2) above “accepted medical standards.”

So once someone is dead, there is the question of what happens with the body, this is where the Disposition of Last Remains can be helpful information.  The declaration of last remains, addressed in our statutes at Colo. Rev. Stat. §15-19-103 et seq., covers several aspects of the disposition of a corpse.  The context for the statute does in some important aspects address the three major historical funerary customs in our country: (1) the rituals performed for a dead person, which can include a visitation or wake; (2) a funeral or memorial service; and (3) the burial service or inurnment.  No, cryogenic preservation is not covered in the tradition surrounding death and disposition of a body, nor is biological continuity – but assistive reproductive technology legislation covers several aspects of what we might leave behind and in Colorado at least, has room for growth.

The statute contains a form for the declaration of disposition of last remains at C.R.S. 15-19-107, and it includes some very important choices, including:  burial, cremation, entombment or “other;” a disposition as determined by a named designee; and requests concerning a funeral, memorial service and other special instructions.

A disposition of last remains often contains a variety of information and this often includes “Anatomical Gifts.”  These gifts are the primary reasons that we have any law at all that defines death – so as to enable organ donation.  This is why “brain death” is called such and why it still remains controversial in many respects.  In the advance directive form I use, there is a clause concerning anatomical gifts.  Many Colorado residents have selected the option of signing up as an organ donor with the Department of Motor Vehicles (a division of the Department of Revenue), and these folks are identified with a small red heart with an embedded “Y” on the lower right corner of the front of the license or identification card.

So what about the interface of the Disposition of Last Remains with the Medical Durable Power of Attorney (MDPOA)?

The MDPOA statute is found at Colo. Rev. Stat. § 15-14-506, and subsection 3 states:

An agent appointed in a medical durable power of attorney may provide informed consent to or refusal of medical treatment on behalf of a principal who lacks decisional capacity and shall have the same power to make medical treatment decisions the principal would have if the principal did not lack such decisional capacity.

An MDPOA may also contain a statement of wishes or give the authority to the agent, after the principal’s death, to make a determination of disposition of last remains of the principal.  This is so because an MDPOA is a “declaration” as defined by C.R.S. §15-19-103.  This is a long post, thanks for reading and until next week . . .

©Barbara Cashman  2015   www.DenverElderLaw.org

More Adventures of the Psychopomp

Wheel from Assisi Church

Wheel from Assisi Church

In a previous post this past January, I wrote about a term, an “office” to be more exact, about which very few of us in this post-modern world know.  The psychopomp is the guide to the “other side” so to speak.  The guide, or lack thereof in our post-modern existence, speaks to an unmet need for some ritual, some meaning-making around the end of life.

So now a bit about Mercurius, a/k/a Hermes, the trickster who is also messenger and guide of souls.  For Carl Jung, Mercurius as guide to “the underworld” meant that he was more akin to the god of the unconscious.  Mercurius is also bringer of news, transformation and other processes including healing and Mercurius does not fight with the other gods of the Greek and Roman pantheon but strives to make sense and meaning of them – which seems to be why Jung’s term synchronicity for meaningful and symbolic coincidences seem to evidence the hand of Mercurius.

But the path is difficult, narrow and often disappears or involves a painful transformation.  Is there something that is the end result of this transformative process? Why yes, there are of course several answers to this, but the integration, the longed-for unity of the adept is that of integrity, that is revealed in its timeless form and no longer subject to change or destruction.  This is symbolized by the lily, a magical flower.  The white lily is emblematic of the primordial goddess from antiquity, has a number of references in the Hebrew Bible and is also depicted in Christian art in paintings of the annunciation as well as Saint Catherine of Siena, for example.

What the ancient alchemists referred to as “alchemical mercury” was a volatile liquid, mainly alcohol, which carried the life force of a fermented plant.  In the process of fermentation, the plant dies and disintegrates, and “gives up the ghost” of its life force to the volatile liquid.  And yes, if you’re wondering  . . .this is where the term “spirits” as in wine and spirits sold at a liquor store – has its origin!

There are references to the psychopomp in the animal world as well.  In art it is often depicted as a deer, whose caution and grace, along with its sudden and unpredictable appearance and disappearance link the animal to Mercurius. The deer, like the transformative intermediary and rather slippery character is often a symbol of the twisting and turning path of transformation or of pilgrimage and the “now you see it, now you don’t” nature of such a course.  Indeed Rainer Maria Rilke wrote about this in “The Book of a Monastic Life,” this from The Book of Hours, with beautiful translation and commentary by Anita Barrows and Joanna Macy and available from Riverhead Press:

You come and go. The doors swing closed ever more gently, almost without a shudder. Of all those who move through the quiet houses, you are the quietest. 

We become so accustomed to you, we no longer look up when your shadow falls over the book we are reading and makes it glow. For all things sing you: at times we just hear them more clearly.  

Often when I imagine you your wholeness cascades into many shapes. You run like a herd of luminous deer and I am dark, I am forest.  

You are a wheel at which I stand, whose dark spokes sometimes catch me up, revolve me nearer to the center. Then all the work I put my hand to widens from turn to turn. 

                Rilke, The Book of Hours, (A. Barrows and J. Macy, transl), l. 45 at 105 (1996).

 

So now that I’ve mentioned alchemy, Mercurius and  Rilke, how can I tie these thread together in the hope of making any sense out of this psychopomp foray?!  Well, that remains to be seen. . . but I will close with an observation and link about the importance of people being with one another as one is dying, for this being with the dying is transformative for the person doing the dying as well as the other person who is part of the relationship.  I recently came across an excellent video entitled “Beginning with the End” – a documentary featured in SXSW. Here’s the trailer.  It’s about teaching young persons about the dying process, as experienced by people whose lives and experiences are shared in relationship. Blue Sky has a longer explanation of the documentary here.

Here’s the overview: Emma and Ernie ate lemon meringue pie together. Ernie taught Emma about life. And Emma helped Ernie to die. In 2002, a high school teacher in Rochester, NY, invited nine high school seniors to attend his new class. The name of the class: Hospice. A decade later, the program continues with student volunteers learning about and providing comfort care for the dying and their families. The film follows the real-life stories of four student volunteers through their senior year. In the quest to understand “the big sleep,” they find a whole new kind of awakening.

What does the involvement of young people caring for the dying involve?  A new language of connection? Most certainly.  As one of the students remarked . . . it’s not about death, it’s about life.  Life’s connections among the living.  Touch, human touch.  Oh yes, and transformation of each of us.

That’s all for now.

©Barbara Cashman  2015   www.DenverElderLaw.org

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