When Death Is Not Death: Stumbling Over the Parameters of “Brain Dead”

Geese at Ketring Lake

Geese at Ketring Lake

I came across this very interesting article in the New York Times about two recent cases of young persons and death.  This is not any old death, this is legally recognized “official” brain death.  Only problem is, the definition of brain dead is a bit tricky.  In Colorado, we have advance directives that distinguish between persistent vegetative state and terminal condition.  As the NYT article points out, the Supreme Court cases which make the advance directive, a/k/a living will so popularized, were all cases involving persons (women) with the diagnosis known as persistent vegetative state, as distinguished from “brain dead.”   Colorado has recognized brain death from at least 1985 on, but one of the challenges with this definition is that it attempts to draw an arbitrary line between the dying process and death.  Where is the end of the line?

The Uniform Law Commissioners created the Uniform Brain Death Act in 1978.  Brain death became much more relevant as a result of organ transplantation and as neuroscience and its imaging technology has become more advanced, there are many more nuances known about the distinctions between persistent vegetative state and when someone has experienced brain death.  Setting aside the medical distinctions, the law does distinguish between brain death and persistent vegetative state.  Here is an article about the legal terminology and some of the techniques used by medical professionals to make such a determination.   Here, I think of the beautiful film The Diving Bell and the Butterfly, about the French writer with “locked in” syndrome as a result of stroke.  There have been several articles in Scientific American on this topic of what is “conscious awareness” and a finding cited in this article that patients who were otherwise in a vegetative state were found to be minimally conscious and capable of learning.   So much for that “bright line” between vegetative state and cognitive awareness.

Interesting and more controversial is this topic of the NY Times article, in the context of how these determinations play out with a teenage girl and a young mother, the persons declared “brain dead” by doctors in California and Texas, respectively.  Both these young women are on ventilators, and their hearts continue to beat.  The NYT article observes: “[t]he two cases are poignant because of a biological quirk of the body: the patients’ hearts continue to beat.”  When I read this observation, I knew that the authors were folks who view the heart as a pump, a pump for the benefit of the brain.  It occurs to me that this may not be a biological quirk as much as a mystery.  Perhaps we don’t know nearly as much about how the body works as we pretend to in our high tech and information saturated era.

So, I wonder – what is running their bodies if their brains are dead?  I disagree with the NY Times journalists that it is “a quirk.”  This is a most basic question yet it challenges our entire brain-centric reductionist view of what life is (rather, how it is measured) and how it is readily distinguishable from death.  My question is simple – how is it that a brain dead person can still live – doesn’t science have a bit of explaining to do here?  No, evidently not if one takes the reductionist view.  The brain is an organ of the body, but it is not on its own “the intellect” or “consciousness” (unless you are a tightly-bound reductionist, and they are represented among neuroscientists).  Since when does only the brain count in making a determination of death?  If the heart is not dependent on the brain, then why should the brain death determination override the determination of death?

Perhaps beyond the difficulties with reconciling our imposed definitions on life and death, or at least attempting to do so in order for them to be consistent with what we think we “know,” there is something that cannot be measured quantitatively but is rather a quality of being.  What if Black Elk, the blind Lakota sage, was able to see with the eye of his heart?  What if there are other ways of looking at the heart that we have not yet discovered?  I’m sure this won’t be the last time I ask this question.

Finally, one last observation.  In this country where provision of medical care is part of our free market economy, does this have bearing on a patient’s quality of life or right to continued care?  Here is a recent law review article about the tort of “wrongful prolongation of life,” which are the only lawsuits of which I am aware involving failure to follow the stated wishes in an advance medical directive.

If all of these questions are too much, I suggest some beautiful artwork on a similar theme.  It is work by Mihoko Ogaki called Light After Death and you can take a look at it here. Thanks to Tomasz for sharing it on Google+!

©Barbara Cashman  2014   www.DenverElderLaw.org

Conscious Living and Dying: Death and Depth – part 2

Japanese Garden at DBG

The first part of this post was about death and depth, depth as in “deep end” of something (yes, I likened it to the familiar swimming pool, with those rope float dividers) that is distant from us, unfamiliar, unknown and just plain scary.  So now I will continue the analogy with a different topography, but along the same theme of that invisible mystery which spooks many of us. . . 

For those of us who have experienced earthquakes, we have a different sense of the relationship between what is the visible ground that appears to be solid and the deeper ground where stirrings can cause a shearing away of that surface, revealing new ground, new possibilities, even amidst massive destruction.

Of course there is a choice about how to react when the ground breaks open.  We can be careful to try and repair it, admiring the petrified crust and not wanting to upset any apparent order or appearances.  Or we can break through the crust, willing to fall hard and break through the known into the unknown.

Into the depth of a center.  Symbolically and mythologically speaking, there can be many places which can serve as a deep center, a mountain or a tree, which one could ascend or which can be reached only after a descent, the undoing of the apparent, exterior, the superficial.  Where is the center?  Well, that depends of course.  Often we simply fail to slow down and consider the obvious question because we are so accustomed to looking past it, well beyond where we are at the moment.  What is it that we know or we think that we know?  I’m thinking of a quote from the poet and essayist Wendell Berry here (this from his collection of essay Standing By Words at 50) about the shortcomings of language – “It is not knowledge that enforces this realization [that you cannot act in your own best interest unless you espouse or serve a higher interest] but the humbling awareness of the insufficiency of knowledge, of mystery.”

Perhaps that mystery is the center for which we long and the voyage to which we dread.  Again there is a choice – to do our won spiritual excavation to uncover truth, the meaning in our won life . . . .  or we can admire the relics of another’s questioning or their excavation, from the comfort of an armchair.  What does it take to move into uncertainty and “go with it?”  Sometimes we don’t have a choice.  This is the dying process.  I’ll include another quote, this one by Vladimir Maximov:

All is mere ashes and dust-

All except the Temple within us.

It is ours and with us forever.

(From Henry Corbin’s 1986 book Temple and Contemplation.)

So if that movement, that moving away from and toward something, is in terms of a center, it is a place where we may realize that we are no longer separate from it but rather identify it as part of a larger whole of existence.  In this way conscious living, along with conscious death, can be our final act of creation in this life.  If death is a transcendence, of words or being, the question follows “to where?”  I had the pleasure of reading “Creation and Recreation” by the late University of Toronto professor Northrop Frye, who observed: “Every unit is a whole to which various parts are subordinate, and every unit is in turn part of a larger whole.” [Creation and Recreation at 73.]

If death is a return, a remembering, a completion, then many of us may feel stranded by a sense of things undone, words left unspoken during a now-deceased dear one’s lifetime.  Guilt, resentment, helplessness, remorse are common feelings here.  These may arise from a denial of death, that we will indeed have time to finish our life to our own satisfaction.   I have seen this approach in more than a few people.  Many of us have never lived liked this before, so how can we be expected to change all this in preparation for a death that is most certainly not desired?  It is difficult to determine when the time of sickness transitions to the time of dying, but an inability to accept one’s life seems to ensure that it will be much more difficult to accept impending death.  Death is a final act, unknown and mysterious, yet it happens every day, all over the world.  It is a final act, an ending, that realization that someone is “over and done with,” but our experience of course tells us otherwise.  In one of the chapters of “Who Dies?” Stephen and Ondrea Levine look at how to finish business with someone who is no longer around?  They note that the answer is always the same – one need not see that person in order to send them love, in order to finish business the other person doesn’t even need to acknowledge your presence, much less the process you are sharing.  Like other types of forgiveness, this type of work is done for its own sake and is not dependent on any “results.”

To conclude this, I will loop back around to that idea of the deep center – which we can travel a path to in our lifetime if we choose, as part of our conscious living, or which we can travel to as part of the final destination in our physical body.  The Levines attribute the following quote from Albert Einstein:

A human being is a part of a whole, called by us “universe,” a part limited in time and space.  He experiences himself, his thoughts and feelings, as something separate from the rest – a kind of optical delusion of consciousness.  This delusion is a kind of prison for us, restricting us to our personal desires and affection for a few persons nearest to us.  Our task must be to free ourselves from this prison by widening our circle of compassion to embrace all living creatures and the whole of nature in its beauty.

Levine at 183.  Just a gentle reminder that Einstein spent his life searching for a unified field. . .

Depending on how we look at it, we have been practicing dying all of our lives.  When we get stuck on or attached to particular outcomes based on our expectations or who we think we are  – we suffer.  Perhaps we can practice this living and dying mindfully, so we can look beyond those prison walls and lessen our suffering in this life.  At the very least, practicing it will make our dying and most likely the acceptance of our loved ones’ dying, much easier for us.

©Barbara Cashman 2013     www.DenverElderLaw.org

Conscious Living and Dying: Death and Depth – part 1

an empty bench

What is death?  Who dies? What if the fear of death is a simple reaction to our lifelong fear of the unknown or our indifference to immortality?

In my work as an attorney, I have many types of conversations with clients and others about life and death matters.  I wouldn’t have it any other way! For many of us, these conversations and topics about human mortality, the value and essence of a life, and other such topics, often have no other venue for discussion.  While many people may think that such topics are the more appropriate domain of medical professionals and the clergy, I know from my experience that this is the exception and certainly not the rule.  Our compartmentalization of modern life has resulted in so many walls erected in our daily existence that it is often difficult to imagine our lives without those dividers.  But make no mistake, those dividers are of our own making and while they may serve us in many respects, they tend to make us myopic, nearsighted in our assessment what our life is for.

Those dividers are sometimes like the rope floats in a swimming pool, marking the shallow end of the pool from the end of the pool that gets progressively deeper and darker.  The shallow end is the safe, visible, transparent and – surely with so many people splashing around in it – the “place to be.”  We often think of the noise and din of that shallow end as just how things are, even if we might question what all the commotion is about.  Certainly some of the noise must be resulting from happiness and joy, right. . . .?

I like the late theologian Paul Tillich’s two meanings of “deep” here: that it means either the opposite of shallow, or the opposite of high.  He also insightfully observed that there can be no depth without a way to that depth.

What is this place, this world in which we find ourselves?  When we surround ourselves with noise and busyness, it is difficult to remember that silence and repose are also part of our world.  These things are unfamiliar to us and often uncomfortable, painful even, when we are so accustomed to the hustle and bustle of the shallow end.  When we encounter the silence and the repose, we might also encounter unfamiliar questions.  What is our place in the world? Where do we find right relationship to our own imperfections?  Here the shallow end, with its easily recognizable surroundings, forms a barrier to us seeing beyond.  Many of us have seen a glimpse of that deep end and we know it’s “out there” somewhere.  Some of us even venture into it, but in order to experience it, we must shed the trappings of the familiar, the armor around which we have encased ourselves, the known and the identifiable of the shallow end must be abandoned in order to move toward the depth.

Death, the process of dying to be more precise, can be regarded as a letting go.  It is the one certainty of our lives and paradoxically the thing we seem to know the least about, hence the “mortal fear.”  If we think about the millions of people who have preceded us, oops, I mean billions – according to demographer Carl Haub the number is 108 billion.  Read the blog post on the Discover magazine site here.   Different wisdom traditions have many similar teachings about what happens during this process of letting go.  The late professor Mircea Eliade has written extensively about common aspects and themes in this regard. The theme “liberation and letting go” is the title of the latest issue of Parabola magazine.  In that issue I especially liked Andrew Holocek’s article “Preparing to Die,” in which he observes “in many ways, the entire spiritual path is about letting go.  It’s death in slow motion.”  This is what many folks would consider mindful living, mindful of our present attention and the detail that everything changes and that, of course, we will die someday.

Holocek examines the Buddhist notions of bardos, the “spaces in-between” that include the spiritual stages of dying, noting there is a body that dies and then there is another body, the very subtle body, which does not die.  I won’t go into the geography or cartography of soul migration here, but I have cited to Stephen and Ondrea Levine’s “Who Dies?” and Kathleen Dowling Singh’s book “The Grace in Dying: How We Are Transformed Spiritually As We Die” in an October post  about my father’s death.   The topic here is about depth, and why we are so afraid of it. . . .

©Barbara Cashman 2013     www.DenverElderLaw.org

Dying With Grace, Dying With Dignity, part II

Beaver Lake, Marble, Colorado

This post is the second installment about dying, a personal one for me as it recounts my father’s death.  I began the first post with this quote from a PubMed.gov  article  I found about dying with dignity:

The definition of dignity in dying identifies not only an intrinsic, unconditional quality of human worth, but also the external qualities of physical comfort, autonomy, meaningfulness, usefulness, preparedness, and interpersonal connection. For many elderly individuals, death is a process, rather than a moment in time, resting on a need for balance between the technology of science and the transcendence of spirituality.

Here is a link to the first post which talks about the three psychospiritual stages of dying and I look at the final stage, transcendence, in this post.

Transcendence   Just a couple days after returning home, he started slipping away.  My dad went through most of the “classic” aspects of the nearing death phase of surrender and transcending.  I remember telling someone who was visiting him why he was either swaying back and forth, like a kid on a rope swing, or why he put his legs in the air and held his arms out in front, as if he were riding a bicycle.  I explained that he was travelling, back and forth if you will, and that this movement was part of the letting go of surrender, moving in the direction of the end.  I remember a conversation I had with Diane, a family friend, who related a late friend’s similar movements towards the end of his life – but he was driving his car to that destination.

Dad passed away less than a week after returning home.  As his time grew nearer that Monday evening, my brother asked me if it was time for the scheduled syringe of oral medication.  I checked the progress of his breathing, which seemed so shallow at that point as to be just a couple inches into his throat.  I knew that the time was near.  My other brother came into the room then and we all grew quieter.  I left the room to find my mom and got a seat for her in the corner of the bedroom.  I was near the foot of dad’s hospital bed and my brothers were on either side of dad’s head when they heard my mother mutter something – almost under her breath.  My brother asked “what did you say Mom?”  I responded without hesitating:  “she said, she forgives you for dying.”  At that point, dad took his last breath.  I’m sure that it was what he was waiting to hear, after all that time.

So what is letting go? Kierkegaard observed that faith is the end of hope.  Faith is what you come to after hope is . . . . abandoned (yes in Dante’s Inferno terms).

When we can let go into another’s dying process, it is possible that we can make it easier for them, giving them “permission” to leave.  The dying person’s letting go, Singh observes at 203, is “not a choice.  None of these transformations of the dying process has been a choice.  Human consciousness unfolds itself as it will unfold itself.”

There is no denial in the heart, only in the mind – the mind is the seat of the egoic control center.  The heart maintains no such illusions!   At the time of surrender, the person’s consciousness unites, or reunites with the ground of being.   I like Megory Anderson’s description here, that “in the sacred act of dying, time is better understood as kairos, God’s time, than as chronos, our own chronological view of time.”  The late poet e.e. cummings was perhaps describing kairos here:

Whenever you think or you believe or you know, you’re a lot of other people; but the moment you feel, you’re nobody-but-yourself.

In her book “Sacred Dying,” Megory Anderson describes different ways to honor the end of life with honor and dignity, and to facilitate a sense of reconciliation and peace.  I recently spoke with someone who works for a local hospice.  This was in the context of a discussion of the importance of an advance directive for a family member, but I asked him about conflict at the end of life – and he assured me that it is unfortunately a frequent accompaniment to hospice care.  How could we honor a person’s dying by owning our own ambivalence and not denying our own or another’s mortality?  For most of us, I think we have a distance to travel here.

I will return briefly to some observations from “The Grace in Dying” that I have written in a manner that may help us, those accompanying a dying person in their journey, to face the process with our fullest being:

  • May I learn to know the difference between the time of sickness and the time of dying;
  • May I learn to listen with the ear of my heart in its true compassion when a loved one is facing death;
  • May I have the strength and discernment to communicate that it is okay to let a loved one go;
  • May I be of assistance in helping a dying person face death and not retract in fear or distraction; and
  • May I have the inclination to not just do something, but to stand there – to simply be when the time comes.

Perhaps if we can reclaim our sense of participation in mortality, in our living and in our dying, this sense of being “out of control” and at odds with a situation can be mitigated.  I’ll quote from my favorite ancient Greek philosopher, Heraclitus:

Out of life comes death, and out of death, life.

Out of the young, the old, and out of the old, the young.

Out of waking, sleep, and out of sleep, waking,

the stream of creation and dissolution never stop.

I will close with a few things to consider if you are visiting someone who is dying.  In the final days of my father’s life many family members and friends came to pay their respects.  Some were at a loss of what to do, just being with a dying person and in such close proximity to death is very difficult for many of us.  I decided to have a copy of John O’Donohue’s book “To Bless the Space Between Us” on hand and encouraged a couple people to pick it up and read one or more of its beautiful blessings aloud if they were so moved.

©Barbara Cashman 2013     www.DenverElderLaw.org

Dying With Grace, Dying With Dignity, part I

September in Marble

This post, along with one for next week,  is about dying – the process of dying to be precise.  I liked this quote from a PubMed.gov  article  I found about dying with dignity:

The definition of dignity in dying identifies not only an intrinsic, unconditional quality of human worth, but also the external qualities of physical comfort, autonomy, meaningfulness, usefulness, preparedness, and interpersonal connection. For many elderly individuals, death is a process, rather than a moment in time, resting on a need for balance between the technology of science and the transcendence of spirituality.

I have been working my way up to writing this post since losing both of my parents in the space of thirteen months – March 2010 for my dad and April 2011 for my mom.  Both were hospice patients at the time of their deaths.

As I quoted the Blackfeet saying in a previous post: Life is not separate from death.  It only looks that way.

What do we really know about death?  It has always been with us, but in our modern culture we are often estranged from it, treating it as some intruder.  I recently checked out Kathleen Dowling Singh’s book “The Grace in Dying: How We Are Transformed Spiritually As We Die.”  I found especially interesting her chapter on the Psychospiritual Stages of Dying.  She describes three basic phases of the final journey: chaos, surrender and transcendence.  For many of us who don’t have any real experience – personal or professional – with dying or death, I think this can seem like a bit of a stretch to describe a process that is as unique as our lives but that looks to be a fairly universal phenomenon – at least among those who go through a process of dying, as opposed to a sudden or unexpected death.

There is a wide variety of how we face death in our individual lives.  Much of it is informed by our culture, which is why I write about grief and death and dying in these posts.  There is much death denial in our country and I think this robs us of important opportunities to honor someone at the end of a life.  This isn’t just an American phenomenon, this estrangement from death.  Here is a link to a German website on the psycho-spiritual aspects of dying.    Denial isn’t always the case of course – I think of an extended family member who planned the menu for the catered meal after her funeral.  But then there was another who refused to speak about her terminal illness, treating that part of her life as some aberration perhaps, disowning it even.

So back to the stages of dying, there is much we can learn about this and it can inform the conduct of our lives in such meaningful ways.  In hindsight, I can see the onslaught of the first stage as my father grappled with the ravages of illness and age.  It comes with a realization that we are perhaps not (as we may have believed all of our lives)  the identity we have come to think of as ourselves, that our separate and personal sense of self is perhaps not all that we are after all.  This is the beginning of the transformative journey to the end of this life.

Chaos.   I remember a dream that my father described to me some months before he died.  He was residing in a nursing home while getting physical therapy every day and trying to regain the strength to return home.  I was pretty sensitive to his difficult situation and I wanted to be able to understand what was going on without asking too many questions.  I certainly didn’t want to ask him any questions he wasn’t ready to answer or consider.  He described the dream to me as follows.  He was on a moving train, travelling in a boxcar for some reason (my dad had worked for the railroad as a switchman during the summer and winter breaks in college).  In this boxcar were some unsavory characters, and for reasons unknown to him they roughed him up pretty badly.  I listened to his description, not really having any idea at that time what it might have meant.  He stayed at this facility for a couple months until he was able to return home, after some modifications were made to the house for his challenges with mobility.

On a couple of my visits to him at the nursing home he expressed concern over leaving my mother as his survivor.  He was concerned about how she would get along, whether there would be enough money.  I tried to reassure him.  These were cherished conversations we had.

After he returned home, his complications increased and then he was placed in hospice care.  His terminal pain needed to be managed better at that point, so he stayed for several days in a hospice care facility.

Surrender.  I learned from the chaplain at the hospice facility that his bags were packed and he was ready for the final journey.  After his terminal pain was under better control, he returned home.  This was a very difficult time for my mother.

to be continued. . . . .

©Barbara Cashman 2013     www.DenverElderLaw.org

 

Facing Grief: Whose Death and Whose Loss?

A Sunny September Day at DBG

This post is about naming the unrecognized grief and respecting the grief experience as an individual human experience.  How do we respond to loss?  I recently borrowed from my  local library “The Other Side of Sadness: What the New Science of Bereavement Tells Us About Life After Loss,” by George Bonanno.  I enjoyed looking at this book because it challenges the recognized notions of what is expected about one’s experience of grief and how the experience of many of us simply doesn’t conform to those recognized expectations.  Let’s face it, none of us likes to be told how to feel – but we so often do that to each other in our child-rearing and in our lack of listening skills.   The chapters of Bonanno’s book cover a range of grief of people who are very resilient and grieve in a relatively short space of time to those who experience an entrenched and seemingly intractable grief.  He writes about the sadness that is part of grief.  I have to marvel that it is no wonder that our happy and PMA (positive mental attitude) obsessed American culture has a hard time with grief’s sadness and despair.  We spend so much energy trying to avoid, to pull ourselves away from discomfort and out of any pain that we often simply become numb – to both joy and sorrow.  But sorrow, like grief, is also a teacher.

“We are never so defenseless against suffering as when we love.” 

Sigmund Freud

Bonanno writes about the “function of sadness” – which he came to consider in working with Dacher Keltner (author of “Born to be Good: The Science of a Meaningful Life” and like Bonanno a psychology professor).  Turns out, sadness helps us remember more accurately.  He notes that “sadness helps us focus and promotes deeper and more effective reflection.” (Bonanno at 31).

In many ways, grief is the proof that we have loved another and that we have engaged our heart in the activity of living.  In this way the grief and the sorrow in our lives, the evidence if you will of our aliveness and participation in the world, along with our own vulnerability – this is what makes us stronger.  Leo Tolstoy wrote “only people who are capable of loving strongly can also suffer great sorrow, but this same necessity of loving serves to counteract their grief and heals them.”  The human psyche, like that human body, has the innate ability to heal itself.

In a blog post from 11/8/12 I asked “Should Anyone Practice Grieving?”   I think I would open that question a bit wider here.   What is grief if we consider that every day of our lives we might lose something –  someone or something that we became accustomed to, counted on, held dear or loved deeply?  What if we looked at the continuum of grief as part of our life in an experiential way.  Starting with the more mundane expectations, the details around which we plan our day and extending to the devastating or catastrophic loss that some will experience.  If we consider that our lives are inherently fragile and subject to constant change – would this make us stronger or weaker as people?   To this question I can respond in a lawyerlike way . . .  “it depends.”

What we grieve and how we grieve may be determined largely by us or we can be at its mercy.  How do we respond to our own weakness?  This is where grief can be a very effective teacher.  A first step may be to honor one’s own feelings, even if they include pain, sorrow and loss of identity.  I often advise clients who are grieving to be more gentle on themselves.  This is especially important when we are dealing with grief that is complicated – such as when a person takes his or her own life, even if it was “expected” – because we just can’t ever gauge how we will respond to such an event.  And what about the grief that is not typically recognized, an “under the radar” kind of grief like when a former spouse dies or an estranged partner or friend passes away?  For a person who hasn’t been married to a former spouse for a number of years, the survivor, along with the decedent’s family and friends, may simply not recognize the feeling or the loss.  Until this type of grief is named, it can behave like an anonymous marauder.

Sometimes grief helps us remember where we came from, where we were at a particular time- fixing, however improbably, an ephemeral recollection with a kind of “date and time stamp.”  Perhaps our true nature as people is to remember, to simply remember who we are.  Isn’t that difficult enough?  What if the experience of grief and sorrow could help reveal that to us?  In fact it often does, sometimes in surprising ways.

A fish cannot drown in water.

A bird does not fall in air.

Each creature God made

must live in its own true nature.

   Mechthild of Magdeburg

Consider the Blackfoot saying: Life is not separate from death.  It only looks that way.

So what is grief then?  Love is attachment, as we know from human development – bonding is a crucial step in an infant’s brain development, and we each form attachments of love with others in our own unique ways.  Grief is like a tear of that fabric of attachment that we can experience in any number of ways.  A tragedy on the other side of the globe, a person whom you have never met, a community affected by violence, a child or a family member.  Grief comes in so many forms and we, as experiencers of grief in our life experiences are even more diverse in its expression.  Listening with one’s heart is a way of sharing grief.  If you haven’t yet lost a dear one or felt the pain of grief’s unmoored emptiness, perhaps you can listen with compassion to another’s story of their loss and their grief.  This –  in the hope that when you have an experience of that nature, someone will be there to listen to you.

©Barbara Cashman 2013     www.DenverElderLaw.org

Health Care Advance Planning – Why Aren’t More People Doing It?

Independence Pass in June

First, off – let’s define some terms here.  Most everyone I talk to knows what a living will is. In Colorado, this is known as an advance medical directive or declaration as to medical treatment.  The living will is widely recognized because it has an effective advertising department in the form of U.S. Supreme Court decisions (remember the cases of Terri Schiavo, Nancy Cruzan).

Does the availability of this document – the living will – really create peace of mind, or is it often just a false sense of security?  In my experience I would say . . .  it depends.  Many people put lots of faith in the document itself.  I think this is where the false sense of security comes in.  If a declarant (the legal term for a person executing an advance directive) hasn’t had a productive discussion with family members or loved ones who will be the ones to effectively ensure that a declarant’s wishes are followed, this can often lead to a false sense of security.  Yes, many people would rather simply sign an advance directive and state their wishes without having the often troublesome and very emotionally charged discussion around those end-of-life wishes and how they are to be effectively negotiated and honored.

The ABA recently updated their Consumer’s Toolkit for Health Care Advance Planning and it covers helpful topics and is an excellent resource.  Executing an Advance Directive is no mean feat.  I offer it to my estate planning clients, but I do so with the caveat that they must discuss it first with the person or persons who will be emotionally involved in the declarant’s end of life care. As a result, not nearly as many people actually complete a living will – but I don’t think this is necessarily a failure on my part.  People need to think before they choose, and the best way to do this thinking is . . not in a vacuum!  Fortunately, there are several good resources available to help folks initiate these conversations.  You can look at the Conversation Starter Kit available at The Conversation Project  and there is even a card game to sort out these values-laden questions with family and loves ones – the “Go Wish” Game from the Coda Alliance .  One of my favorite documents is still the thorough (some would say exhaustive) health care values document available from the University of New Mexico.  When is a good time to have this conversation? Anytime of course, but I think it’s a good idea to start percolating these conversations as we enter the number of holiday times in the fall and winter.  If you want to explore state specific instructions and forms, the Colorado information made available by Caring Connections is very helpful.

I started thinking about this topic again as I read my latest issue of Bifocal, the e-zine published by the ABA Commission on Law & Aging.   I found especially interesting Charlie Sabatino’s article entitled “Eight Advance Care Planning Lessons That Took Me Thirty Years to Learn.”   His first lesson?  Most advance directives aren’t worth the paper they’re printed on!  Yes, there’s that false sense of security theme again . . . Why would he say this? Well, it goes back to the difference between having a document signed and having an understanding entered into .  Yes, we are free to make our choices, but the fact is, many of us making those choices are not adequately informed about the consequences of our expressed choices.

In Colorado, we have some of the most advanced law in the country pertaining to medical decision-making and autonomy.  See Colo. Rev. Stat. 15-18-103.  The Colorado Medical Treatment Decision  (Living Will) Act was repealed and reenacted in 2010 and several new tools were added.  They include: revisions to the regulations governing the CPR (cardiopulmonary resuscitation) directive; a new and improved Living Will Act; and a new provision regarding that Vulcan green form you might have seen in a hospital or skilled nursing facility –establishing  the Medical Orders for Scope of Treatment (MOST) process.

As I often reiterate to people I speak with, a living will can be a useful tool, but it has very limited application to end-of-life treatment and is relevant in two settings primarily –where there is a persistent vegetative state or a terminal condition.  I wholeheartedly agree with Sabatino’s second point in his article – that the real task of advance care planning is appointing and informing a health care agent under a medical durable power of attorney.  I instruct my clients that they need to consider this one carefully, especially since adult children of elders are notorious for their level of denial regarding disease and death in old age.  Many of my age cohorts (baby boomers) cling to the belief that hospice care is akin to “giving up” and may have serious emotional difficulties with following a parent or loved ones state wishes – especially if they haven’t had that heart-to-heart conversation with the person beforehand.  Nevertheless, naming a person in charge of decisions is a far more effective technique to manage choices around care than a statement of wishes.  But don’t get me wrong, I recommend the full package for my clients, but I recognize that many people are not really ready for such an excursion, so I insist on the conversation in advance on the appointment of a health care agent.  I often ask clients in this context – could this person (if they are selected as agent), adequately express  and follow your wishes and make difficult choices that other family members may not agree with?  Then perhaps you have selected the appropriate agent.  It needs to be a person carefully selected, knowing that they would be able to make a difficult decision for you and still be able to sleep at night.

These discussions are not usually easy to start, but they are invaluable and they help us sort out what is important in our life that needs to be honored in our demise.  The easiest way is to simply begin.  This topic is great fodder for a Thanksgiving table conversation!

©Barbara Cashman 2013     www.DenverElderLaw.org

Offering Support and Grieving in the Digital Afterlife

Mesa Verde National Park

Most people don’t want to think about death and dying and the digital afterlife is part of the denial-based mindset that is widely accepted in our culture.  Recently I read an interesting article in the September/October issue of Scientific American Mind entitled “managing Your Digital Afterlife,” which discussed, among other things, how we genuinely grieve using an online medium.  I think to the online obituaries that are now commonplace and the messages left in a guest book at such sites. Perhaps you have heard of CaringBridge, a nonprofit  online community where terminally ill people and family members can get support (by helping friends and family organize meals, coordinate care, etc) and people can post updates on health events and other developments via journal entries.  I know people who have used it and it is a great way of staying in touch and offering care and support when people really need it.

Enough time has passed now with the biggest psychological experiment ever (a/k/a the internet) for studies to have been done about using it as a venue for grieving.  The article talks about how Facebook users interacted with the digital remains if you will of a decedent, returning to pages on anniversaries, birthdays and other events as a way to keep the memories of that person alive.  It makes me think of the memorial prayer – that says we are not gone until we are forgotten.  How will online grieving open us up to grieve in new ways, to forge new social support for survivors and maintaining a sense of connection with a deceased loved one or friend?

The Well of Grief, by David Whyte

Those who will not slip beneath

   the still surface on the well of grief

turning downward through its black water

  to the place we cannot breathe

will never know the source from which we drink,

  the secret water, cold and clear,

nor find in the darkness glimmering

  the small round coins

     thrown by those who wished for something else.

(from the 1992 CD entitled Close to Home, with special thanks to John L. for sending the CD of David Whyte’s spoken poems to me)

One of the biggest interferences with the grieving process that I see as an estate lawyer is when a person passes away and the grieving survivors have no idea where to find important information, accounts and contacts and often have no idea where to look.  For those reasons, organizing information is an integral part of the estate planning process I undertake with clients.  So what can we do with these complications when it comes to digital assets and digital remains?  What is it that we can leave behind online when we pass away?  What kind of property is it?  To whom does it belong? The legal issues arise out of a lack of clarity of answers to these questions and this can have adverse effects on the grieving process.

Digital property is not easily defined, as it depends on what the matter is, how it is used, and so on.  This is both a nascent and evolving area of the law.  So far only six states have digital asset laws that are part of their probate code.  Colorado is not one of them.  The Uniform Law Commissioners  are working on a uniform law in this area, which seems like a natural for uniform law adoption – the digital commons involve both state and federal laws.  I have drafted powers of attorney which cover several types of digital property and digital access, but the law in this area (access to an incapacitated persons digital property and accounts using a power of attorney) is less than clear.  Not even the finality of death seems to clarify the nature of a decedent’s digital assets.  Stay tuned for further posts on this topic.

©Barbara Cashman 2013     www.DenverElderLaw.org

 

Why Are We So Afraid of Alzheimer’s and Other Forms of Dementia?

Barb Cashman in IrelandI thought this recent post especially telling – that Stephen King’s biggest fear is Alzheimer’s.     Many of us know the basic facts about Alzheimer’s and other forms of dementia – and they are scary.  But to look at the fear more closely, is it the basic, elemental fear of losing control, of losing who we are, who we have become, that a disease that could bring our death could do so in  a way that is impersonal in its robbing of identities?  Dementia disregards all conventions of what might be recognized as a “good death:”  a death that the dying person and the survivors can accept and “live with;” a death with some kind of meaning; an instantaneous death without fear.  But what about the dignified death that is perhaps accepted and welcomed when it enters the room?  Is this possible?  From time to time I represent people who have lost a loved one to Alzheimer’s or some other form of dementia.  It is often a long and protracted grief because so much of it is anticipatory, a grief for someone who is “gone” but has not yet died.

If dying is a process of letting go, then dementia can be a very long version of that letting go.  The letting go in an explicitly public way, as it affects one’s interactions with others and the ability to care for oneself.  If the fear of Alzheimer’s is about disintegration of the ordered self that we have come to think of as who we “are,”  then it is a most potent fear because we haven’t determined either a cause or a cure for Alzheimer’s or other forms of dementia.  All our advances in medicine, technology and drug therapies – and we are still largely helpless in the face of this disease.

So back to the fear of this disease. . . .   Do we fear it because it is a threat to civilization? Freud’s view of civilization is essentially a defense against the soul world, the forces of nature and her elements: earth, water, air and fire.  The elements are subject to constant change and so contain inherent creative, generative as well as destructive powers – powers that are largely beyond our control.  What to do about this?   If our view of civilization is of a defense against the chaos of nature, and the ego development is a tacit rejection of nature and the soul world, then perhaps one way of making sense of dementia is to look at what is the person who is afflicted with dementia.  Some of us remark “he’s just not the same person anymore” and we focus on all the losses sustained as the person with dementia becomes less and less capable of caring for themselves, managing their affairs or otherwise being able to maintain their grip on “reality.”  We focus on the medical aspects of the disease, diagnosis, prognosis and what drugs can be prescribed, the rising tide of incapacity.  We look at disease and death as the enemy, something to be fought against.  I am in no way suggesting of course that we give up on or diminish all the neuroscientific advances that shed light and offer a more complete understanding of our brain circuitry, but I am suggesting that our fascination with science and the material world can distract us from the bigger question – who are we are what are we here to do?

Nature and the soul are part of the mystery that we cannot control and struggle to make sense of.  The medical field is divided about how to address devastation of Alzhemier’s.  Dr. Jerome Groopman had an article in The New Yorker entitled “Before Night Falls” about this and there is controversy that goes much deeper than that.  I’m thinking of a recent post from The Myth of Alzheimers.

I found this article in my latest SciAm Mind intriguing: Can Caresses Protect the Brain From Stroke?  which is essentially about the power of human touch and how essential it is to our neurocircuitry.  In case you have forgotten about this story, which has played out over many years in different hospital NICU units, it is about the “rescuing hug” of a premature twin newborn that saved her struggling sibling by being placed in the incubator next to her and then extending her arm around her twin.

Is part of the fear of the disease and its progression based on this battle we have with nature – our own nature and nature itself?  In some ways, dementia is a peeling back, a withering away of all the personality and identity that has accumulated from all the doing of a life and it is a return to that fundamental nonverbal, preverbal means of communicating based on being, and not the constructs of doing.  People with dementia often become frustrated due to their difficulty or inability to communicate or organize their thought or mobility processes.  Human touch, as nonverbal communication can help calm persons with dementia and can also provide important benefits for the person giving the calming touch – particularly if they are a family caregiver.  It is important to remember that much can be done to prepare for the disease and its progression, and important wishes can be expressed about end of life care and about what is important to individuals and family members.  It is of utmost importance to have a health care power of attorney executed and, if desired, advance directives as well.

I agree with the late Tom Kitwood, that people with dementia have much to teach us.  You can read more about his alternative theory of dementia , not as a medical model but rather as a dialectic between the personal, social and neurological aspects of a person.

A bigger question might be to consider whether our life is a long remembering or a long forgetting.

©Barbara Cashman 2013    www.DenverElderLaw.org

 

 

 

Health Care Power of Attorney, HIPAA and Hospice

 

When someone asks me what a health care power of attorney or MDPOA (medical durable power of attorney) is for, it usually takes a bit of an explanation.  Sometimes I will talk about the roots of “informed consent” in medical treatment deriving from the Nuremberg trials.   World War II tragically produced many sound principles of international law.    In our country, we sometimes speak about rights and autonomy in the context of medical care, but longevity and medical advances have provided a new proving ground for patient autonomy.  We have the right to decide alongside the right to not decide.  Beyond the advance directive, which seems to have its own well-run PR department, few people are aware of the MDPOA and its significance and utility in today’s world of medicine.  Making treatment choices in advance becomes particularly important when a frail elder and family members face difficult decisions about treatment choices.  These matters are often made more difficult by the way our health care “system” works in this context, the Medicare context, where doctors are paid per intervention, often leading to worse outcomes for patients  those patients who tend to be over treated.  Indeed, when people make their wishes known to family member and empower another to decide for them in a MDPOA , that empowerment alone can often lead to better outcomes.    So empowerment about health care decisions, considering the “what happens if. . . “ along with the “what happens when. . . . “ can help give our lives meaning by considering the end of our lives – not just as a cessation of life but in the context of its meaning.

I’ll quote Ralph Waldo Emerson here

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”
Whatever your purpose is, make sure that you have the difficult conversation in advance.  It will ease your mind and the minds of your dear ones.  They will know what you want and will be much less inclined to select by default the heroic and futile medical interventions that are so often based on guilt, guilt flowing from the lack of knowledge of what the person would have wanted for themselves.

On the less philosophical and more practical front, whatever the documentary source of your MDPOA, you will want to ensure that it contains an effective HIPAA release.  Learn more about the Health Insurance Portability and Accountability Act of 1996 here.    Otherwise, your appointed agent may have all the authority to make decisions for you but effectively no access to your federally protected health care information.  I was reminded of this a few years ago when I visited a client in the hospital.  I asked one of the nurses at the desk if they had a MDPOA form available and they gladly supplied one to me.  It did not contain any HIPAA release. . . .

Just because you are a family member doesn’t mean you have HIPAA authorization.  You might be familiar with the codes that many hospitals now use regarding access to information.  The best policy is to have a MDPOA with a HIPAA release.  An interesting detail on the HIPAA front. . . . .  This is a recent development that is interesting as it involves digital health information, also known as “electronic protected health information” or ePHI.  It is the first settlement on record of a breach involving a provider with fewer than 500 patients.   The hospice involved was fined as a result of the theft of a laptop containing ePHI on which it had not adequately adopted or implemented security measures to ensure confidentiality of ePHI it created, maintained and transmitted using portable devices.  You can read the entire Resolution Agreement here .   Hospice providers generally make home visits to their patients and this is a cautionary tale about the threats of portable medical care and home visits.

A couple helpful resources for Coloradoans looking for more education about MDPOAs and advance directives include pamphlets available from The Colorado Bar Association at www.cobar.org and information from the  Colorado Advance Directives Consortium at www.coloradoadvancedirectives.com

©Barbara Cashman     www.DenverElderLaw.org