Fiduciary Access to Digital Assets – an update of sorts

Italian Wall

Italian Wall

Well, it’s been a while since I’ve written a post about digital assets in the probate context.  This year, Colorado was one of twenty-three states whose legislatures introduced the Uniform Fiduciary Access to Digital Assets Act (UFADAA).  Keep in mind that the uniform act was endorsed by the National Academy of Elder Law Attorneys (NAELA) of which I am a member.  The Colorado House Bill to enact the UFADAA was introduced at the beginning of the year, HB 15- 1189, and can be read here.  Its short lived history is this: introduced in the Colorado House and assigned to the Judiciary Committee on January 29, committee discussion took place on February 19, and then on March 12, 2015, the House Judiciary Committee voted unanimously to postpone indefinitely further action.

Our legislature has postponed further action on this uniform law, but it doesn’t mean that it isn’t important for people and estate planning attorneys to address issues concerning access to digital assets by fiduciaries in the probate context.  According to the bill fiduciaries included the following: a personal representative of a decedent’s estate (where there is a will or codicil or also a special administrator); a conservator acting on behalf of a protected person; a trustee acting under a trust; and an agent acting under a durable power of attorney.  The bill specifically addressed each type of fiduciary and their access to a digital asset in further detail.

The Colorado Bar Association subcommittee charged with discussion of this uniform law as a Colorado bill also discussed Colorado-specific inclusions to the Uniform Act, like access by a “successor” as defined in  our probate code when a small estate is collected by affidavit. Basic Information about using this form is found on the Colorado State Judicial website, www.courts.state.co.us and searching for the JDF 999 form, with instructions found at JDF 998.

Specifically excluded from application is access by an employer for an asset used by an employee in the course of the employer’s business.

So HB 1189 didn’t become law because it died in committee, but that doesn’t mean that at least some of us estate and elder law attorneys (especially ones like me who prefer to use their own form and not someone else’s) don’t still include provisions regarding digital assets in a durable power of attorney form.  Colorado remains in the majority of states which have no legislation regarding digital assets in the probate law context, but that doesn’t mean we should feel comfortable remaining complacent and not doing anything to plan just because our legislature didn’t pass this important legislation. . . .  There are step we can take to help ensure that a fidicuairy will have access to important fiduciary assets, but without a state statute to that effect, it is much less certain exactly what type of access will be allowed or recognized.

So here’s a bit of a review of why these measures are important to include in a general durable power of attorney and a will or trust:

  1. Identifying and providing an inventory of one’s digital “footprint” will greatly simplify an agent or other fiduciary’s ability to take control of an incapacitated or deceased person’s digital assets in keeping with the stated desires of the person giving the power – like a principal under a POA, the settlor of a trust, or a testator (the maker of a will). This can be done easily by keeping an update listing in a place that is discoverable or known to an agent, for example.
  2. Giving a fiduciary access to important information like usernames, passwords and the like, will greatly simplify the fiduciary’s efforts and ability get access from a service provider or to shut it down. The law in this regard is complicated – it involves user agreements, which often are based on the law of a state where the service provider is headquartered and not in which the user resides, and implicates also the federal law relating to the use of the internet.
  3. When a person gives another, such as a person acting as a fiduciary for that person, the authority to act, there should also be some instructions about what should be done with the particular asset. This will obviously makes the fiduciary’s job much simpler as a job description takes much of the mystery out of such an undertaking.
  4. The person who is the account holder should also expressly authorize service providers to disclose private information to a person’s fiduciary so as to evidence the person’s intent to give access to such information and to provide the authorized access to the information or data as a consequent of such access. This is why some of us, myself included, include specific clause to this effect in a durable power of attorney.

That’s all for now, but I will keep you posted as things continue to develop.

©Barbara Cashman  2015   www.DenverElderLaw.org

 

Approaching Grief and Grief’s Consolation

www.denverelderlaw.org

Piazza Sculpture in Siena

Life, living and being open to change (whether it is desired is another matter) invariably involve grief, because change – inevitable as it is – often involves grief, a recognition of a loss for something or someone beloved or simply familiar.

I find it odd that so many people use fighting terms and war language in reference to a disease or threatening physical condition, as if it were “the enemy” which must be vanquished at any cost.  This is quite contrary to many other cultures’ acceptance of the inevitability of death.

I found instructive some of the teachings from the Samurai code of conduct, known as bushido and as described by the late Japanese writer (and paradoxical figure) Yukio Mishima in the 1977 Basic Books’ translation of “The Way of the Samurai: Hagakure in Modern Life.”  He observes that when a samurai is constantly prepared for death, he has mastered the Way of the Samurai and if a man holds death in his heart, thinking that whenever the time comes he will be ready to die, he cannot possibly take mistaken action.  What Mishima describes is an intimacy with one’s own death that can help train one’s heart and mind to focus on the life that is right now, in the present moment.

I also think of the Native American saying (attributed to many different tribes and bands as well as to the Lakota leader Crazy Horse) “today is a good day to die.”  Its essence reflects the belief that one should never live a moment of one’s life with any regrets, or leave important tasks left undone. This preparation, which is an acknowledgement of our mortality and life’s fragility and uncertainty, means that it would make today as good a day as any to die.  Implicit in the ability to recognize a “good day to die” is the understanding that one can more easily let go when a life is well-lived, because of course the proper focus here is on the quality of life as a continuation of that life in its ending, in death.

How different this approach is from our death anxiety and death denial of the post-modern age.  Mortality and disease are often seen as the “enemies” in the medicalized model which is so prevalent now for health care for our elders.  We simply want more time – but what do we often do with the time once we get it?  We bargain for more.  Longevity becomes as obsession, a form of greed in some respects because that greed for more quantity of life, not quality, separates us from the “how” of our living, leaving only some length of days for which we should be grateful.  Greed for our quantity of life, and for those experiences that we will miss if our life is “cut short” (at whatever age) – this greed is a form of forgetfulness of our mortality.  To the extent we remember, we often feel “out of control” and anxious due to the uncertainty or our demise – both the timing and circumstances.  I have known one woman who planned the meal for after her funeral service including the menu for the caterer.  How many of us could do that?  Mostly I think we follow what is written in so many Tax Court rulings: “taxpayer died unexpectedly.”

Or perhaps it is simply because we have become rather used to thinking of our physical body as something separate from ourselves somehow, as if it were a medical problem to be managed.  This is in many respects the post-modern mechanistic view of North American longevity and life.

And what of the consolation of grief, or better expressed as “from grief” – the recognition that we are never alone in our grief as there is always someone who has, in their own way, experienced an incalculable and unfathomable loss? This is part of our human condition to be sure, but as Heraclitus observed:

Whoever cannot seek

The unforeseen sees nothing,

For the known way

Is an impasse.

Perhaps he is also addressing a similar choice presented by the entry of life via the narrow gate.

What if grief is not something that “happens” to us that is to be “gotten over” but is rather a fundamental aspect of human activity, of be-ing human?  How might this change how we look at our mortality and our inevitable death?  In this respect, grief can be viewed as an invitation to be more fully human.  We, in this dark age of pervasive objective materialism, where mysteries are stripped away – are challenged deeply by this.  We can’t measure the unseen or the mystery or think it through because it is a quality of being.  This is the domain of the heart – a realm that includes the rational but goes well beyond its rather short tether.

Finally, I’ll close with a good clip to watch of a Canadian friend, Judith McGill, who is a “death midwife.” She was recently featured in a CBC- Radio Canada broadcast and you can listen to it or read it here.

©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

 

 

Is Physician Assisted Death Coming to Colorado?

The Road Only Appears to End

The Road Only Appears to End

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

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

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

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

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

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

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

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

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

©Barbara Cashman  2015   www.DenverElderLaw.org

 

Part II of Law and Culture’s Response to Death: Where Do We Put Our Dead?

centennial estate planning

Ketring Lake at Dusk

 

This is a continuation of my previous post about “where do we put our dead?” but I am in fact beginning at the end (depending on how you look at it of course!) with the aspect of dying and how this factors into our death denying culture.

In chapter 12 of The Hour of Our Death, entitled “Death Denied,” Philip Aries introduces the chapter with “the beginning of the lie” in which he draws upon ample support in literature for this new development and the beginning of the medicalization of death, which of course persists today.  Looking at Tolstoy’s Ivan Ilyich written in the 1880’s, Aries notes the similarity of the medical lie that cheats one out of one’s own death with an experience he recorded of a priest dying in 1973.  He notes next the progression of the denial into what can be considered many aspects of its present states – the developing and deepening “death taboo” as described by the Englishman Geoffrey Gorer in 1963 (Aries at 575); its emphasis on discreet funerals, a certain indecency of mourning; and as the unwillingness to speak about the inevitable deepens, there enters the triumph of medicalization – the ultimate in estrangement from and incapacity to reckon with one’s own death.

I’m thinking also of another work, this one by B. Hayslip, Jr. and C. Peveto, “Cultural Changes in Attitudes Toward Death, Dying and Bereavement,” (2005: Springer) in which the empowerment and disempowerment choice is presented squarely to the patient in the medical setting.  The question examined included three with widely varying responses, which were further broken down along ethnic/cultural affiliations among Americans.  Most of the respondents stated they would want to be informed by a doctor that they were dying, while fewer responded that it was as important for others, such as family members, to be informed.  The most interesting number was the very small – 4-7% of respondents who related that they had told another person they were dying.  Hayslip and Peveto at 7, 114-15.  Here there is more than ample evidence to let the medical establishment do the “heavy lifting” as it were, relating to communicating a person’s imminent demise.  Age and ethnicity play important roles in how a person, as a member of a community views illness, mortality, old age, dying and disposition of a body and the grieving process attendant to that.  Id. At 78-84.

So with the medicalization of death we have other factors, whether they are causal or correlative is a question for social scientists to research.  What was once a basic fear, as writers like Ernest Becker put it  – the fear of death – has now become complicated with the alienation attributed to the medicalization of the dying process and our estrangement from it as a natural process, as part of life.  The fear is complicated now by an unspeakable anxiety which makes the fear into something much bigger and more complex than it is.  Of course, the medicalization of death is not a factor in death denial in many more traditional cultures and there are important developments in our country relating to the backlash against all of the medical intervention (but then that is another topic!).  Bottom line for my purposes here is that the medicalization of death has contributed to our sense of powerlessness and alienation from our own death and the death of others.  You might of course observe that the sense of powerlessness over death has always been with our kind and I would of course agree, but the alienation and its particular form is both a modern and post-modern phenomenon which I find particular troubling and symptomatic of a greater loss.

Finally, I will take a look at the so-called “green alternative” to burial: cremation.  Both of my parents wished to be cremated and their cremains are inurned at Ft. Logan.  My challenge with cremation is that it seems to be a further extension of the alienation from death.  The body is dispatched to the funeral home or mortuary, which may or may not have its own crematory on site and if it doesn’t sends the body out to another facility for such purpose.  I am reminded of my late aunt’s comment “just cremate me,” which struck me as being similar to “just take out the trash.”  I loved my aunt and found the comment upsetting at the time, even if I didn’t have any qualms with her cremation following her death.  I can’t tell you how many clients I have talked to about cremation and the rather unique issues it raises that many folks have not previously considered during the past where burial at a particular location was the unstated choice for nearly all people.  What container will hold the ashes?  Where will they be kept?  Who will keep them?  What happens to them when something happens to the custodian of the cremains? While cremation affords many more choices than burial to answer these questions and uniquely express the deceased person’s wishes, more often these questions are never answered and people can get stuck with their ex-wife’s uncles remains. . . . !

I haven’t had the chance to watch this PBS series called Dying in America from 2004, but you can watch it here.  Crematory workers are not immune from graverobbing so to speak, a New Jersey funeral director was convicted of selling body parts, while a German crematory employee was allowed to keep the proceeds from some eight years of sifting through cremains for precious metals (to the tune of $800,00.00) because a court ruled that such property belonged to no one.

I guess the biggest issue I have with cremation is the anonymous disposal of the corpse.  The corpse is typically dispatched by strangers hired by the family and the operator of the incinerator is the sole witness to the final dissolution of the deceased person’s physical being.  Yes, it does hasten the ashes to ashes transition, but I have reservations about how the process is undertaken, as if the body as a container is deserving of very little respect.  I just did a search and found that there is a funeral pyre in Crestone, Colorado.  This makes the cremation a public event, as practiced by Buddhist and Hindus of today and a different choice for cremation.

So I’ll end this post with something a little more upbeat (perhaps).  Fresh off the internet . . . Here are the top ten “classic” (I read that as dinosaur) rock songs about death:

Keep Me in Your Heart by Warren Zevon.  I’ve previously posted a link to the youtube of this beautiful number, which Zevon wrote in the face of his own mortality (he had terminal cancer)

Knocking on Heaven’s Door (okay, I switched this fave of mine from another Dylan tune that was listed)

The Last Carnival by Bruce Springsteen (a tribute to two deceased members of the E Street Band)

The Wreck of the Edmund Fitzgerald by Gordon Lightfoot, a beautiful ballad that takes the listener back to a seemingly different time and a relationship which most of us don’t have with tragedy

The Show Must Go On –  by Queen. I watched this video of the meaningful song performed by frontman Freddie Mercury as he was growing progressively weaker with AIDS

Dancing with Mr. D – the Rolling Stones (drug overdose isn’t the only means mentioned)

In My Time of Dying – Led Zeppelin

Tears in Heaven by Eric Clapton

42 – by Coldplay . . .  okay, it’s not classic rock but it’s a band I really like and the number 42 happens to be, as revealed in The Hitchhiker’s Guide to the Universe, “the answer to life, the universe and everything.”

Don’t Fear the Reaper – Blue Oyster Cult (this was #1 on a list I found but I remember this from high school and all the vampire movies popular at that time, so it got demoted in my listing!)

©Barbara Cashman  2015   www.DenverElderLaw.org

 

The High Price of Death Denial

Highlands Ranch probate

Fall Colors near Pine

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

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

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

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

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

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

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

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

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

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

 ©Barbara Cashman  2014   www.DenverElderLaw.org

 

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

Mount Hope Cemetery, Rochester NY

Mount Hope Cemetery, Rochester NY

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

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

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

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

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

Hillman, The Force of Character at 93.

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

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

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

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

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

To be continued . . . .

©Barbara Cashman  2014   www.DenverElderLaw.org

August 6th Interactive Gathering on The Conversation Project

 

denver elder law

DBG Japanese Garden Stream

 

I recently received an invitation for an event at The Denver Hospice (at their corporate headquarters) and wanted to share it with the community.  I have blogged previously about the importance of having a conversation about end of life wishes (and also the need for documents based on that conversation – like a health care power of attorney and advance directives) as well as The Conversation Project and so this cause is near and dear to me.  I won’t be able to attend this event, but know it will be well facilitated by Laurel Okasaki-Cardos, community educator at the Life Quality Institute.  If you are interested in participating, please email Laurel at lokasaki@lifequalityinstitute.org to get more information or RSVP.  You can also call her at 303-398-6259.

In case you can’t attend the gathering at the Denver Hospice on the 6th, Laurel offers these interactive gatherings for groups of seven or more people – free of charge – if you are interested in organizing one for your community.  Be sure to get in touch with her if you want more information.

©Barbara Cashman 2014     www.DenverElderLaw.org

Sharing a Difficult Diagnosis – Listening With Love

My great-great grandparents

My great-great grandparents

The other day I read an interesting post from Health Care Chaplaincy.  As synchronicity would have it, I had earlier that day responded to an online friend’s sharing of a very grave diagnosis.  You can read the Health Care Chaplaincy post entitled “Dying to Be Heard” here.  Sometimes it seems odd that so much of our inward searching and striving toward meaning and purpose in our lives must rightly involve sharing with other people, family and loved ones as well as relative strangers.  I think it is the simple fact of recognizing that we are human and that we each have very different ways of being in the world but there are several important ways in which we connect as humans and by connecting, restore our own humanity as we recognize it and honor it in others.

Ease and dis-ease.  What is the real distinction?

Here is a nice YouTube video about one man’s journey through a diagnosis and into the rest of his life.  So managing that solitude and intimacy divide is an essential struggle that we face no matter where life’s twists and turns take us.  One struggle that a chronic debilitating condition or a terminal illness places in front of a person is the question about how to spend the limited space that is the rest of life.  There may be a shift from quantity to quality.

How one’s world begins to shrink or congeal as a result of a diagnosis or a disease progression (in the case of debilitating physical losses or mental or cognitive impairments) is a uniquely individual thing.  Shrinking can sometimes bring clarity and freedom.  What is a person’s life story and how does it change, if at all, as the result of a life-altering diagnosis? One type of active listening that I learned about during my mediation and facilitation training (and maybe also from reading a few parenting books) is reframing.  It can be based on among other things, a listener’s ability to restate what a speaker has said, and to reflect on the feelings and values communicated by the speaker’s words and often their gestures.

I think it is a good idea to not underestimate the power of listening and of being heard.  There are many lists, tasks, processes and other guideposts around negotiating grief in our lives, but each of us experiences it differently.  Just as we all feel loss in our lives differently, the grief which is the feeling of attending to the grief is unique.  The opportunity to be heard and to listen to others is a way of extending compassion to another and recognizing our common humanity in this uncertain thing we call life.

I liked this recent post from SciAm entitled “A Happy Life May Not Be a Meaningful Life.”  And no, I didn’t like it just because the authors began the post with a quote from Viktor Frankl, but also because some of what they observe is about happiness as a thing that one gets, something material, defined outside of us.  Its relation to meaning in our lives, which is about quality – not quantity, stands in contrast.

What is it that makes sense in our lives and of our lives? I think paying attention to mortality can be an excellent teacher.  I will quote from The Prophet by Kahlil Gibran:

You would know the secret of death.

But how shall you find it unless you seek it in the heart of life?

For life and death are one, even as the river and sea are one.

. . .

Only when you drink from the river of silence shall you indeed sing.

And when you have reached the mountain top, then you shall begin to climb.

And when the earth shall claim your limbs, then shall you truly dance.

The Prophet (1976: Knopf) at 80, 81.

The power of telling and listening to a story is a power to heal.  It only requires two of us – a speaker and a listener.  Compassion is a core value, fundamental to our interdependence on one another.  Life goes on after a difficult diagnosis, but the terms on which we engage often change, sometimes dramatically and other times by degrees.  The terms most certainly can change as we reach farther in our lives and deeper.  Confronting our own mortality is never easy, but sometimes people do so with incredible grace.  You can listen to the late singer Lorraine Hunt Lieberson’s rendering of Bach’s Cantata 82 “Ich Habe Genug”  here on youtube.  At the time of the recording she knew that her time was limited, due to the progression of breast cancer.

As we learn to approach and embrace the spiritual side of our mortality and attend to dying as a natural event and not as a medical problem to be managed, we can provide the care from the heart.  As that quote attributed to many different persons goes “the longest distance known to man is the distance between the head and the heart.”  We may be solitary travelers on our own paths, but we are not alone in our hearts.

©Barbara Cashman  2014   www.DenverElderLaw.org