Memento Mori: Bringing Death Into Conversation

Memento Mori – from Kirkwall, Orkney Islands

Memento Mori: Remember Death, That You Will Die

Last weekend I attended the International Death Symposium in Toronto, Canada. I went with a friend who is a Canadian death midwife.  We both enjoyed it. It was a rather extraordinary place to be, amidst an entire community of folks committed to dispelling the death taboo.  The presenters and attendees were Canadians mostly, some Americans and an Irishman who spoke eloquently about his father’s death and wake.

So, what is conversation anyway?

Definition of Conversation

1 obsolete : CONDUCT, BEHAVIOR

2a(1) : oral exchange of sentiments, observations, opinions, or ideas

… we had talk enough but no conversation; there was nothing discussed.

—Samuel Johnson

(2) : an instance of such exchange : TALK; a quiet conversation.

Of course, I couldn’t mention “conversation” without a reference to The Conversation Project, which is a very useful tool to help people (like many of my clients) toalk about the end of their lives and express their wishes and values around that part of life.

In this post, I’ll share a couple highlights from the symposium. One of the “rocks stars” who presented was BJ Miller, a hospice doctor from San Francisco.  You can watch a video here about the “problem of death” in our medical delivery system.  Part of his presentation at the Symposium addressed the conflict of aesthetics of caring for the dying and the widespread use of anesthesia.

Aesthetic versus Anaesthetic

My late mother, an R.N. who received her nurse’s training through the Nurse Cadet Corps, would have been thrilled to hear an M.D. make reference to the work of a nurse.  The nurse was none other than Florence Nightingale, the “mother of nursing,” who wrote about the aesthetics of caring for patients.  Miller contrasted Nightingale’s insistence on aesthetics – a set of principles concerned with the nature and appreciation of beauty – with the current widespread use of anaesthesia (or anesthesia in the US) which is the numbing or rejection of aesthetics in favor of

Insensitivity to pain, especially as artificially induced by the administration of gases or the injection of drugs

In this place of intersection between our ability to sense and perceive beauty with the selfsame capacity to sense pain, what do we make of our commonly accepted and pervasive use of drugs in this country (and so much of the west) to numb us down to “ease our suffering” regardless of where in our lives we encounter that suffering?  It could be at the end of our life, somewhere in-between for a surgical procedure, or it could become a lifestyle treatment for anxiety and depression.  Does it matter where the suffering occurs for which we seek anesthesia?

Our Sense or Capacity to Appreciate the Beautiful is Inextricably Linked to Our Capacity to Feel Pain

Isn’t the pain of dying just the pain of living at a time of greater uncertainty?  Why do we pretend we can draw the distinction so clearly –  particularly during a time of unprecedented numbers of people dying of drug overdoses?  I’m not talking about the present opioid crisis – a recent study has shown that our current opioid overdose epidemic actually began forty years ago and has been increasing – exponentially – since then!

How and why we distinguish between the pain of living and the pain of dying . . .  well, that’s a topic for another blog post!

I’ll write more soon about the Symposium.

I’ll close with Emily Dickinson’s Because I Could Not Stop For Death

Because I could not stop for Death –

He kindly stopped for me –

The Carriage held but just Ourselves –

And Immortality.

 

We slowly drove – He knew no haste

And I had put away

My labor and my leisure too,

For His Civility –

 

We passed the School, where Children strove

At Recess – in the Ring –

We passed the Fields of Gazing Grain –

We passed the Setting Sun –

 

Or rather – He passed us –

The Dews drew quivering and chill –

For only Gossamer, my Gown –

My Tippet – only Tulle –

 

We paused before a House that seemed

A Swelling of the Ground –

The Roof was scarcely visible –

The Cornice – in the Ground –

 

Since then – ‘tis Centuries – and yet

Feels shorter than the Day

I first surmised the Horses’ Heads

Were toward Eternity –

From The Complete Poems of Emily Dickinson, Thomas Johnson, ed.

That’s all for now, next time I’ll post about the Phone of the Wind, a.k.a Kaze No Denwa

© 2018 Barbara Cashman  www.DenverElderLaw.org

Giving Tuesday – Consider Giving Some Time to an Isolated Elder

Make the Connection!

Today is Colorado Gives Day!

Otherwise known as Giving Tuesday, the day designed to spotlight opportunities for people to give to charitable causes.  The day seems to have come into existence when two organizations, the 92nd Street Y in New York City and the United Nations Foundation came together in October 2012, with the intention to set aside a day that was all about celebrating the generosity of giving, a great American tradition.   According to USA Today, Giving Tuesday raised $180 million in online donations.  That is nothing to sneeze at!

Donating Locally is Easy!

Here in Colorado, we’ve got our own website with over 2,000 nonprofits listed to receive donor’s contributions.  You can visit the website and find a good place for your donation to support if you’re at a loss about which type of charity you’d like to benefit.

Instead of highlighting the worthy nonprofits which serve low-income elders, I’m looking at Colorado Gives Day with a different goal in mind – to raise awareness about reaching out to socially isolated elders in our communities.  I’m not just talking about making contact with folks who reside in senior housing residences, assisted living or skilled nursing facilities, but also to those elders who are “gaining in place” in their own homes and face considerable social isolation based on a number of factors.

What About Donating Your Time?

One way to ease an isolated elder’s isolation and also solidify our own connections with community members we might never have otherwise met – is to volunteer our time – even if for a few short minutes or hours.

You can easily volunteer your time locally through a nonprofit like Metro Volunteers, who will match your skills with a nonprofit looking for someone with your skills.  Whether it is a board of directors position you seek, a mentoring opportunity with a youth, or serving food to people at a shelter – Metro Volunteers can assist.

But the focus of today’s post is about giving time to an elder who is isolated.

There are numerous article and research into the effects of loneliness on the elderly population.  One recent study concluded that loneliness is a significant public health concern among elders.  In addition to easing a potential source of suffering, the identification and targeting of interventions for lonely elders may significantly decrease physician visits and health care costs.

Decreasing an Elder’s Sense of Isolation Helps Prevent Elder Abuse

I’m reposting a link from an elder abuse prevention listserve I am part of, originally posted this morning by the Social Media Manager of the NYC Elder Abuse Center at Weill Cornell Medical College.  The holidays are difficult times for many of us.  She writes “During the holiday season, family gatherings are more commonplace. Older adults feel social isolation more acutely, yet crave the connection. This holiday season NYCEAC is asking our social media followers to commit to have a conversation with an older adult in their life during the month of December. We know everyone benefits from a connection, and improves the health of the community at large, too.” We’re calling our campaign Countering Isolation, or #CounteringIsolation.

Remember that this type of giving of our time to another who doesn’t have the physical, psychological, financial or emotional wherewithal to engage in the broader community is a good thing with many positive benefits for us,  Happy Giving Tuesday!

© Barbara E. Cashman 2017   www.DenverElderLaw.org

Dementia, Fear and Aid in Dying

Sunset on an Artificial Lake

 

For this first post of June, I am revisiting a topic that has been discussed in previous posts: Alzheimer’s (or other forms of dementia) and the fear of aging.  Combining that volatile mix with the question of assisted dying presents a long list of novel questions.  The topic  was sparked by a phone call I received from someone residing in another state but who was looking for information about Colorado’s End of Life Options Act.  The specific query concerned the caller’s desire to explore options to end a spouse’s suffering from Alzheimer’s disease.  My response was fairly straightforward and I think the caller was a bit surprised by my candor.  I explained that under the Colorado law a patient or “qualified individual” was required to, among other things, have the capacity to give informed consent to the  receipt of the aid-in-dying medication to end the qualified person’s life.  See Colo. Rev. Stat. § 25-48-102(13) defining “qualified individual” and § 106(e) which concerns more details of the individual’s “informed decision.”

The caller was surprised when I explained that the only legislature which has to date considered expanding the aid-in-dying law to dementia patients was Oregon.  The Oregon Senate Bill 893 would allow for those persons otherwise qualified for administering receiving life-ending medications under Oregon’s Death with Dignity Act, except that the  patient who ceases to have capacity to give informed consent can still be given life ending medication if there is a specific advance medical directive which expressly authorizes an agent under a medical power of attorney to collect and administer the life-ending medication if the incapacitated person previously received a prescription for such medication.

Alzheimer’s Disease and other forms of dementia (here I will collectively refer to them as AD) are typically the most feared diseases of post-modern westerners who privilege their rationality (remember the Cartesian mantra “I think therefore I am”) and perceived autonomy over all else.  Further, our techno-medical way of examining aging, of parsing out different functions of one’s life ascribed to different body parts, leads us to believe that whatever form of cognitive impairment – age related or otherwise – might just be a part in need of fixing or a disease waiting to be cured. This type of reductionist thinking refuses to look outside its own narrow pigeon hole. In the meantime, those of us who do not perish will age in our own unique ways and many of us will struggle with its challenges.

Whose fear is it – and whose suffering?

What do we make of this fear of AD and fear of a person’s – er – a personality’s – disintegration?  I think in several important ways it is the same fear as the terror of dying, just a bit more latent and prolonged, and therefore more menacing than death for some people.  I’ll quote from Shakespeare’s Julius Caesar (III.i. 102-105) here, the conversation between Cassius and Brutus:

Cassius: Why he that cuts off twenty years of life

Cuts off so many years of fearing death.

Brutus: Grant that, and then death is a benefit:

So are we Caesar’s friends that have abridged

His time of fearing death.

There are many ways to respond to one’s own AD and to that of a loved one’s.  One way is to project our own fears onto the other person, who appears a shadow of the former self or as completely incapacitated.   But there is no standard response, even though some “conventional wisdom” (I use the term tongue in cheek here) might be welcomed by many who find the disease and its process most bewildering.  A slight detour here . . .

Bewilder is defined in the Merriam Webster online dictionary as (transitive verb):

1:  to cause to lose one’s bearings (see bearing 6c) bewildered by the city’s maze of roads;

2:  to perplex or confuse especially by a complexity, variety, or multitude of objects or considerations His decision bewildered her. utterly bewildered by the instructions.

And what if we break down that verb into a command – be wilder, wild from the noun wild) to be:

1: A natural state or uncultivated or uninhabited region.

2: (the wilds) A remote uninhabited or sparsely inhabited area.

Now back to my topic. . .

My concern is that there are many faces of Alzheimer’s Disease just as there are many aspects to an individual’s response to a loved one affected by AD.  I am thinking particularly of a recent article published in Kaiser Health News, entitled “How to Help Alzheimer’s Patients Enjoy Life, Not Just ‘Fade Away,’” and you can read that here.  The fact remains that each person is affected by AD is his or her own way and the “preoccupation with the cerebral pathology” (which the psychiatrist Dr. David Rothschild criticized in his 1936 paper on the psychodynamic model of senile dementia) often serves to fan the flames of fear and anxiety over our collective preoccupation with the losses of aging.  There are many other paths to choose here – not just the one of least resistance which is fear based.

© 2017 Barbara Cashman  www.DenverElderLaw.org

Medical Aid in Dying for Dementia Patients Who Lack Capacity

A Maelstrom?

A couple days ago a bill was introduced in the Oregon senate (S.B. 893 – you can read it here) which would permit a patient’s expressly identified healthcare agent in an advance healthcare directive, “to collect and administer prescribed medication for purpose of ending patient’s life . . . if patient ceases to be capable after having received prescription for life-ending medication.”  [Thanks Jennifer for the heads up!] This bills extends Oregon’s medical aid in dying law (the Oregon Death With Dignity Act) to allow another person (“expressly identified agent”) to get the prescription for MAID and administer it to the person who lacks the capacity to arrange for getting a prescription for MAID and self-administering it.

The definitional section of the bill, which highlights the additions to the existing Oregon law, clarifies that “expressly identified agent” is an agent under a health care power of attorney.  The additions state further:

SECTION 3. An expressly identified agent may collect medications dispensed under ORS 127.815 (1)(L)(B)(ii) and administer the medications to the patient in the manner prescribed by the attending physician if:

(1) The patient lawfully executed an advance directive in the manner provided by ORS 127.505 to 127.660;

(2) The patient’s advance directive designates the expressly identified agent as the person who is authorized to perform the actions described in this section;

(3) The patient’s advance directive includes an instruction that, if the patient ceases to be capable after medication has been prescribed pursuant to ORS 127.800 to 127.897, the expressly identified agent is authorized to collect and to administer to the patient the prescribed medication;

(4) The medication was prescribed pursuant to ORS 127.800 to 127.897; and

(5) The patient ceases to be capable.

This is a huge departure from what might be called the “status quo” of the handful of states (and last month, the District of Columbia) regarding the legality and administration of MAID.  When I presented at the CBA/CLE Advanced Elder Law Institute last week on the new Colorado End of Life Options Act, I mentioned that something like this would be inevitable.  I had no idea that this bill would be introduced the following week!

This Oregon bill basically eliminates the requirement of mental capacity for a patient to be qualified to arrange for MAID.  The Oregon statute concerning health care powers of attorney can be read here.  So many concerns come to mind I can scarcely name them.  It makes the principal’s job of selecting the correct health care agent a matter of life and death – literally.

Dementia – of a variety of types – can often last for years, so perhaps it would not be so easy for a principal with dementia to be otherwise qualified under the Oregon law (with a terminal illness and not expected to live longer than six months) to have the health care agent end the principal’s life.  I’m not certain that diminishes my concerns.

What if there is a passage of years between the naming of the health care agent and the advance of a person’s dementia?  There is often a change of relationship that occurs during this time, whether it concerns a spouse, life partner or child.  How would this be accounted for?  There is no allowances for change of circumstances here.

This prospect of putting someone out of their misery might just be what my veterinarian meant (as she was administering the drugs to end my much-loved elderly dog’s life) when she stated “I wish we could do this for people.”  But there is of course the prospect (along with many examples over the course of human history, particularly recent history) of putting another person out of our misery.  How do we discern the difference in these circumstances?  I will write more on this topic later.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

 

Springtime!

Ethical Wills and “Legacy Letters” – an Overview

denver elder law

Italian Marble

It’s been a few years (3 ½)  since I’ve written on this topic, and a colleague recently asked me to speak on this at an event this fall.   The fact is, I think writing an ethical will is another way of imparting meaning into our lives – whether we are young and healthy and writing to our young children about what we hold dear and hope to carry into their future, or we are old and sick and recording more of a legacy of a life lived.   In my previous blog post, I described five different approaches to writing an ethical will: an explanation; an expectation; an affirmation; an historical document (think genealogy or heirlooms); and a statement of values.

In today’s post, I’m focusing on the last approach – a statement of values.  An ethical will in this context is essentially a document which can serve to identify those values, that “something” to live for, which has sustained the author and given meaning and texture to the tapestry of one’s life.

The ethical will or legacy letter is the big picture view of what can be encompassed in estate planning.  Keep in mind that the majority of Americans die without any estate plan in place.  Many of those folks might simply respond to a question about any need for planning with a retort “I’ll be dead, so I won’t care” – but I think there is some fear lurking behind that otherwise lackadaisical sounding statement. . .

If one chooses to engage in estate planning by executing: powers of attorney which name others to act on our behalf in the event we are unable (which may include a conversation and some direction about how money should be spent for one’s care); a living will to express our end of life health care preferences; and a will which sets forth how our estate will be distributed then  — is it really much of a stretch to go from identifying what you need to live to identify something to live for? I think not!

Here is a link to a website with some touching examples of ethical wills written by a variety of people.   What I am suggesting here is that the ethical will can help us to live life more fully – read: by preparing to die – and as preparation to face the rest of one’s life, with whatever level of fear, exhilaration or trepidation that entails.

So here are some ideas to employ for that statement of values:

Describe who you have been or who you are now in relationship to your family of origin, your family of creation and perhaps your family of choice;

  • Write about those things that you hold most dear, what you are grateful for and perhaps also the things you regret;
  • Describe those principles, rituals, or teachings, etc., which have been important to you and explain why they hold such meaning to you; and
  • Write about aspects of your life and your values that demonstrate the meaning of your life, the experience of that meaning and how you have constructed the meaning(s) over the course of your life.

These are just a few examples of how, in the creative act of putting into words one’s life story, or describing the values one holds dear, one can construct a broader meaning and see connections of the disparate or seemingly disconnected parts of a life in new ways.  The context or impetus for telling one’s story may be significant to the context of the story or perhaps not at all.  Constructing a life story – even if it is only an early part of a life – is an example of how we as human are engaged in the search for meaning.  I have always been fond of Ernest Becker’s term for our species – homo poetica or “man the meaning maker.”

This search for meaning, as well as our attempts to construct and our longing to impart meaning, can be a very useful tool for us at any age.  The ethical will as an example can help us integrate our life’s experiences and help us see the “big picture” of the meaning of our life and the lives of others as well.  It reminds me of Viktor Frankl and his logotherapy, based on “will to meaning.”   Each of us, no matter what is the ease or difficulty we face in our lives, remain free to find the meaning in our own life.  Writing an ethical will can help us construct that meaning.

© 2017 Barbara Cashman  www.DenverElderLaw.org

 

Colorado End of Life Options Act – A Vocabulary Lesson

A Threshold

I’m gearing up for a continuing legal education program where I’ll be presenting on this new Colorado statute [EoLOA for short, even if it sounds more like Hawaiian], so I’m now writing part of my materials.  I thought I’d start with the basics in this post by looking first at how terms are defined (or not defined) in the statute as well as the parameters of the “right to request” life ending drugs.  I will list the entire definitional section here, but due to space constraints, will focus only on a couple salient terms in this post.

Here’s an overview of some of the key terms in the statute’s definitional section, 25-48-102:

  1. Adult means an individual who is 18 years of age or older;
  2. “Attending physician” means a physician who has primary responsibility for the care of a terminally ill individual and the treatment of the individual’s terminal illness.
  3. “Consulting physician” means a physician who is qualified by specialty or experience to make a professional diagnosis and prognosis regarding a terminally ill individual’s illness.
  4. “Health care provider” or “provider” means a person who is licensed, certified, registered, or otherwise authorized or permitted by law to administer health care or dispense medication in the ordinary course of business or practice of a profession. The term includes a health care facility, including long-term care facility as defined in section 25-3-103.7(1) (f.3) and a continuing care retirement community as described in section 5-6-203 (l)(c)(I), C.R.S.
  5. “Informed decision” means a decision that is:
  • (a)Made by an individual to obtain a prescription for medical aid-in- dying medication that the qualified individual may decide to self- administer to end his or her life in a peaceful manner;
  • (b)Based on an understanding and acknowledgment of the relevant facts; and
  • (c)Made after the attending physician fully informs the individual of;
  • (I) His or her medical diagnosis and prognosis of six months or less;
  • (II)  The potential risks associated with taking the medical aid-in- dying medication to be prescribed;
  • (III) The probable result of taking the medical aid-in-dying medication to be prescribed;
  • (IV) The choices available to an individual that demonstrate his or her self-determination and intent to end his or her life in a peaceful manner, including the ability to choose whether to:
    • (A)Request medical aid in dying;
    • (B) Obtain a prescription for medical aid-in-dying medication to end his or her life;
    • (C) Fill the prescription and possess medical aid-in-dying medication to end his or her life; and
    • (D) Ultimately self-administer the medical aid-in-dying medication to bring about a peaceful death; and
  • (V) All feasible alternatives or additional treatment opportunities, including comfort care, palliative care, hospice care, and pain control.
  •  (6) “Licensed mental health professional” means a psychiatrist licensed under article 36 of title 12, C.R.S., or a psychologist licensed under part 3 of article 43 of title 12, C.R.S.
  • (7)“Medical aid in dying” means the medical practice of a physician prescribing medical aid-in-dying medication to a qualified individual that the individual may choose to self-administer to bring about a peaceful death.
  • (8) “Medical aid-in-dying medication” means medication prescribed by a physician pursuant to this article to provide medical aid in dying to a qualified individual.
  • (9) “Medically confirmed” means that a consulting physician who has examined the terminally ill individual and the terminally ill individual’s relevant medical records has confirmed the medical opinion of the attending physician.
  • (10) “Mental capacity” or “mentally capable” means that in the opinion of an individual’s attending physician, consulting physician, psychiatrist or psychologist, the individual has the ability to make and communicate an informed decision to health care providers.
  • (11) “Physician” means a doctor of medicine or osteopathy licensed to practice medicine by the Colorado medical board.
  • (12) “Prognosis of six months or less” means a prognosis resulting from a terminal illness that the illness will, within reasonable medical judgment, result in death within six months and which has been medically confirmed.
  • (13) “Qualified individual” means a terminally ill adult with a prognosis of six months or less, who has mental capacity, has made an informed decision, is a resident of the state, and has satisfied the requirements of this article in order to obtain a prescription for medical aid-in-dying medication to end his or her life in a peaceful manner.
  • (14) “Resident” means an individual who is able to demonstrate residency in Colorado by providing any of the following documentation to his or her attending physician:
    • (a)A Colorado driver’s license or identification card pursuant to article 2 of title 42, C.R.S.;
    • (b)A Colorado voter registration card or other documentation showing the individual is registered to vote in Colorado;
    • (c)Evidence that the individual owns or leases property in Colorado; or
    • (d)A Colorado income tax return for the most recent tax year.
    • (15)“Self-administer” means a qualified individual’s affirmative, conscious, and physical act of administering the medical aid-in-dying medication to himself or herself to bring about his or her own death.
    • (16) “Terminal illness” means an incurable and irreversible illness that will, within reasonable medical judgment, result in death.

So here goes . . . this law is only for adults! There is no provision for minors as is allowed in some European countries, like Belgium.  Next, you’ll note that the physicians (they must be licensed M.D. or D.O., no N.P. or P.A. allowed) have a huge amount of responsibility.  Remember that the gist of this law is to remove the threat of criminal prosecution for assisting a person to die by prescribing life-ending drugs under certain proscribed circumstances, so this focus on the doctors is wholly appropriate.

The two basic types of physicians are the attending and the consulting.  The attending physician is the one who has primary responsibility for the care of the terminally ill individual.  We are familiar with the phenomenon of the “pot shop” doctor here in Colorado . . .  well this provision is designed to ensure that the attending is not someone who simply provides the scrip for the life-ending medication or “medical aid in dying” [hereafter MAID] as the statute calls it.

The attending physician must “fully inform” the individual of the diagnosis, prognosis of six months or less; as well as the choice (see (5) (c) above) and consequences of requesting MAID as well as the alternatives including additional treatment, palliative care and hospice care.  Unfortunately for us, the terminology used in (5) is “informed decision,” which is a term foreign to Colorado law.  In the statute it is tied to “mentally capable” in (10), which includes the ability to make and communicate an informed decision to health care providers.  The Colorado term which is familiar to me is from the Colorado Medical Treatment Decision Act, at C.R.S. §15-8.7-102(7), which defines “decisional capacity” as the ability to provide informed consent to or refusal of medical treatment.  A similar definition is found in the health care POA statute, at C.R.S. §15-14-505(4).  The preceding section of that statute also states (at §15-14-504(4):

Nothing in this part 5 shall be construed as condoning, authorizing, or approving euthanasia or mercy killing. In addition, the general assembly does not intend that this part 5 be construed as permitting any affirmative or deliberate act to end a person’s life, except to permit natural death as provided by this part 5.  

Interesting, huh? While reviewing inconsistencies between these terms describing capacity is something attorneys might get excited about, it appears unlikely to provide difficulties for the physicians involved.   I will discuss the “mentally capable” determination a bit more in a later post that looks at mental health concerns.  Likewise, the duties and responsibilities of the attending physician are numerous and I will continue the discussion of what the statute describes in a later post.

I will conclude this first post about statutory language with an observation.  Death as described in the EoLOA is defanged, now a technical medical procedure, even a treatment if you will, for perceived intractable suffering.  The option to seek out MAID to end suffering involved with a terminal illness has little to do with the physical pain incident to illness (statistics from Oregon bear this out) and more with the loss of dignity and quality of life, presumably incident to the progression of the disease.  Why should an elder law attorney like me be concerned about this? Because in our culture, much of the experience of aging is focused on losses and precious little attention is directed toward gratitude for our continued life, such as it may be!

The other matter that concerns me greatly in the “technocratizing” of dying and actively choosing death is that we surrender even more power to our doctors.  This has little to do with our perception of how medical technology is used to extend life, but rather is concerned with our thinking about the nature of life, including disease, dying and death.  Our doctors cannot protect us from suffering – they are only doctors after all, but they can help manage treatment of pain.

More “vocabulary terms” next week.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

 

 

A Brief History of Death

Living and Dying at the Same Time

Can you discern in this picture what is alive and what is dead?

Death, the inevitable.  Death, the rejected.  Do we feel sorry for death? No! Of course not.  Is it separate from our lives or merely a natural part of them? What parts of our lives are we more comfortable with or at ease with and how do these factor into our relationship with death?

Whoa Barb . . . relationship with death, relationship to death.  What is it that holds us to our life and, inevitably, leads us to our death?  What is the meaning of this relationship? Well, I can only think that this kind of question is what poetry was meant for. . .  so I turn to the Trinidadian poet Derek Walcott’s poem Love After Love:

The time will come when, with elation,

you will greet yourself arriving

at your own door, in your own mirror,

and each will smile at the other’s welcome,

and say, sit here. Eat.

 

You will love again the stranger who was your self.

Give wine. Give bread. Give back your heart

to itself, to the stranger who has loved you

 

all your life, whom you ignored

for another, who knows you by heart.

Take down the love letters from the bookshelf,

 

the photographs, the desperate notes,

peel your own image from the mirror.

Sit. Feast on your life.

Here is the poem read aloud (by Jon Kabat-Zinn)

When I started to put together this post, I thought I’d try a google search of my title, which tends to bring up something fascinating.  Sure enough, there was another reminder about my lapsed New Yorker subscription . . . a post dated 11/6/16 by Nir Baram.  The New Yorker has such insidious ways of luring subscribers back again and again!  But I will remain undeterred.

So what might I say for this kind of post – brief, about something as impersonal and ultimately personal as death?  I might describe the denouncing, distancing, the walking or running away from, that so many of us steadily manage over the years of our lives.  But what happens when we realize that the distancing has only been in the shape of a giant and fascinatingly graceful circle, or perhaps a woven pattern or a circuitous route ala Jackson Pollock?  Can we even recognize it as our own, part of our heritage as mortal beings?

How is it (I asked my engineer friend this last night) that we can gauge or measure someone or some thing’s age?  Its beginning and its end?  I certainly see the need for practical purposes to come up with such boundaries.   But we tend to observe them without any questions at all.   And the location of that separation as well as its origins, well that’s another matter.  We might arrive at a place where or a time when we might question those boundaries.  Whose death is it? Who dies?  Stephen Levine’s book explores this well.

My post today is perhaps a window dressing of sorts for some writing I will be doing about the Colorado End of Life Options Act.  I will be interrogating some of the ideas, beliefs, thoughts, expectations and so forth about dying and death (particularly euthanasia) in some future posts.  I’ll close with a quote from a favorite poet, E.E. Cummings:

Unbeing dead isn’t being alive.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

Dementia and the Growing Prevalence of Elder Abuse

Not Winter Flowers

Not Winter Flowers

I was reading a list serve post yesterday that told of the member’s father (a retired attorney in another state) who got a call from a scammer claiming to be an attorney working on behalf of a grandchild in trouble with the law.  The post was essentially a “heads-up” kind of post to a new mutation on the old long lost grandchild scam.  You can read an article about how that scam works from the perspective of the scammer here.  Sadly, some other members of the list serve community reported a couple instances of this one when it worked successfully, relieving the loving grandparent of a sum of money.  One such scam was traced to a caller in the Ukraine!  If it sounds like it might never happen to an elder you know, think again – these folks are quite sophisticated.

This is an introduction to some news that I recently read about our neighbors in the UK: Dementia is the leading cause of death in England and Wales.  Read the BBC News article here.

This means that as other health challenges are effectively managed throughout one’s old age, dementia remains in the background so to speak, a silent killer.  It’s no surprise that the bulk of these dementia deaths were of women, as women tend to have a longer life span than men.  What I thought was particularly interesting was this figure: Dementia, including Alzheimer’s disease, accounted for 15.2% of all female deaths, up from 13.4% in 2014.  Is this due to more effective means of diagnosing Alzheimer’s (which ordinarily must be done with a brain autopsy or at least a slice of that organ’s tissue to identify those amyloid plaques)? Or is it due to an actual rise in the number of persons afflicted with the disease, as demonstrated in the graph in the article which shows it steadily overtaking heart disease since 2012?

Dementia is a leading side effect if you will – of our longevity.  This news doesn’t just impact our health and longevity of course, factors mightily in the need for further raising the awareness of elder abuse.  Folks with dementia are likely to be victims of some form of elder abuse, neglect or exploitation.   The burden on the rest of us to be able to detect elder abuse is crucial to our collective well-being.  The community plays a foremost role in the detection of elder abuse in its many forms and so community members – through meals on wheels volunteer, peers at a community center or members of a faith community, can play a major part in this effort.  I don’t want to minimize the importance of prevention, but I think our awareness needs to focus first on the detection of the myriad forms of elder abuse.

My introduction to this post was about a scam by someone posing as a person assisting a grandchild – but most of the reported cases do not involve “stranger danger” as it is called in the child welfare context.  Sadly, when the abuser or exploiter is an adult child or other family member (as the vast majority of such cases appear to be) the elder is faced with a difficult choice indeed because their ability to be maintained in their own home is severely compromised.  We have some battered women’s shelters, but no emergency housing for abused elders.   We simply must be able to move forward with the development of services for at risk elders and design some kind of basic architecture of supportive services.  Right now, everything is dependent on where an elder lives.   How many community resources there are largely depends on local and state funding because whether the detection resources, such as law enforcement and adult protection services, are adequately informed to detect elder abuse – makes a huge difference.

Here’s a link to a very informative program from Nashville Public Television.  Especially as we tout “aging in place” as the best kind of living arrangements for most elders, we must face what that can mean for them and the risks it can pose.  We must respond to this call for being present to our elder community members!  I will write more about what looks to most of us to be a challenging landscape of familial relations and unfamiliar ethical territory.

© Barbara E. Cashman 2016   www.DenverElderLaw.org

November is National Family Caregivers’ Month

Clouds in Water

Clouds in Water

In the post, I will look at some of the challenges of caregiving for a loved one with dementia and provide some resources for this growing population.  November is also National Alzheimer’s Disease Awareness Month.  Here’s a link to the Alzheimer’s Association’s caregiver center, which has helpful information and resources.

As we approach the holiday season, it struck me that it would be a good time to revisit this topic.  The holiday season and its focus on family activities and get-togethers, can cause additional strain to family relationships made stressful due to an elder parent or loved one’s dementia.

The first important detail is that people with dementia are usually cared for by family members or friends and the most of them (about 80%) are receiving care in their homes.  Here are some numbers from the Centers for Disease Control:

Each year, 15 million Americans provide more than 17 billion hours of unpaid care for family and friends with Alzheimer’s disease and related dementias. More than six in ten (62%) caregivers were women, almost one in four (23%) were 65 years of age and older, and three in ten (30%) had children under 18 years old living with them.

Caregivers of those persons with dementia usually provide such care for a longer period than the caregivers for other diseases or conditions, and the CDC statistics on this demonstrate that

More than four in ten (43%) caregivers of people with Alzheimer’s and related dementias provide care for one to four years, and more than three in ten (32%) are caregivers for five years or more. For other types of chronic conditions that require care, more than three in ten (33%) caregivers provide care for one to four years, and almost three in ten (28%) are caregivers for five years or more.  

Caregiver stress, caregiver burnout, and for premature death for an elder spouse of a person a suffering from dementia are all very real risks here.  The demands of caregiving for a loved one with dementia subject the caregiver to greater risks of anxiety, depression and overall poorer quality of life.  So, that is the bad news. . . so what kind of resources are available to support these caregivers?

There are a range of options to consider of course, as every person or family’s situation is unique.  Perhaps all that is really need is a bit of respite care.  Sometimes just the prospect of respite care being available can make a huge difference in the emotional health of a family caregiver.  Here is a link to the Colorado Respite Coalition, which has a variety of resources available.

The vast majority of caregiving in this country is done by family members free of charge.  For many people however, volunteering these services is simply not a financial option.  Here’s a link www.disability.gov, the federal government’s website that has links, resources and helpful information for family caregivers as well as information about how family caregivers can get paid to perform such services.    And here is a link to the eldercare locator, a public service of the U.S. administration of Aging.  The Medicare.gov site also has some information that can be helpful to caregivers about what Medicare provides.  The AARP site lists these five skills that help persons care for the elders they love: observation (paying attention to changes); organization; communication; questioning and tenacity.

Several of the helpful sites above advise elders to put important legal documents in place while the elder retains capacity to do so.  When will you know whether a power of attorney is needed? Chances are good that it will be too late for an elder with dementia to execute a power of attorney once it is determined that such a document is needed!  So, I will close this post with a reminder concerning a couple bare minimum documents which are required to ease the burden of family caregiving: a health care power of attorney (with a conversation about end of life wishes with the named agent, successor agent and perhaps other family members) and a general durable (financial) power of attorney.

Both of these documents are planning documents that are designed to prevent the need for later protective proceedings in probate court  – for guardianship and/or conservatorship – in the event of an elder’s inability to manage their money or if they become incapacitated due to advancing dementia.  The American Bar Association’s “tool kit” for advance health care planning has good questions to consider in how to select your agent and list your priorities.  Remember, one of the best ways for elders to NOT be a burden on their loved ones is to plan ahead and the value of that advance legal and medical planning should not be minimized.

© Barbara E. Cashman 2016   www.DenverElderLaw.org

 

End of Life Options and Deathbed Ethics part 2

Italian Sculpture

Italian Sculpture

 

In last week’s post about Colorado’s Prop 106 – End of Life Options, I looked at the version of “death with dignity” as another theater for denying death.  Someone I spoke with a couple nights ago was puzzled when I made this comment as she thought that choosing one’s own demise couldn’t be, by definition, death denying.  Well yes, there is a difficulty with the terminology here as well as the language! But I am talking about the big picture here.

How do we define “deathbed” when it is someone who actively wants to die, as opposed to someone who may or is likely to die relatively soon, most likely as the result of a terminal disease?  Are the deathbed and our deathbed ethics defined by the person who will die or do we use some other standard to determine this?

  1. End of Life Options and Its Stated Goal of Allowing an End to Intractable Pain

Oregon has had a physician assisted death statute the longest of any state, since 1997.  The 2015 Oregon statistics are quite telling here. I think most people conclude that what we are talking about here is the ending of a terminally ill person’s intractable pain.  But wait a second, that reason is pretty low on the scale of what people in Oregon mentioned in 2015 to justify their choice of physician assisted death.  The top three reasons were: “less able to engage in activities making life enjoyable” (96%); “losing autonomy” (92%); and “loss of dignity” (75%).  Does this surprise anyone?  “inadequate pain control” was mentioned by 28.7% of people.  We are not talking about physical pain here, contrary to what most folks seem to believe.  People getting the lethal medications are saying that it is the pain of losing the life they once knew, as an autonomous individual.  This is one of the reasons why the Not Dead Yet disability community and many others get excited about this important detail –  because it is inherently a quality of life issue.

Besides, there is a problem here with this “physical pain” rationale . . . Why, if the question is intractable physical pain as touchstone, would we limit the relief allowed only to those suffering from a terminal illness.  Why exclude from physician assisted death those who face chronic, intractable and debilitating pain but are not terminally ill?  Dax Cowart’s story about his right to refuse treatment in this context is instructive.  Cowart wanted, demanded to die on many occasions, but wasn’t allowed to do so.

  1. The Relation Between the Exercise of the right to Die and the Risk of Coercion

Note that it is not possible for us to exercise our rights in a vacuum.

In the context of this asserted right, as identified at least within the parameters of Prop 106, how do we account for the basic human dignity inherent in our lives – in whichever level of capacity or incapacity, meaningfulness or meaningless we find ourselves?  I don’t think the asserted right addresses this at all.  I think here the asserted “right” is simply an uneasiness with our “diseasiness.”  Quality of life and human dignity – how do we calculate or assign value to our existence? If we focus on what we don’t have any longer (as many elders tend to do) – a level of autonomy previously enjoyed that is no longer, a loss of control over bodily functions, and a dependence on others for basic needs – then we assign a limited and diminished value to a particular type of our existence.

I have spoken with more than a few elders who have explicitly stated that they do not want to outlive their money or have mentioned other ways in which they do not want to be a burden on their children or others.  If the elder is old and frail, maybe appearing to be going downhill after a fall, what would there be to stop or slow a family member’s subtle coercion to simply give up?

Well, it turns out I could write many more posts on this topic because it really is about the quality of our humanity, not the right to die with a doctor’s assistance.  So, you’re wondering . . . what is the alternative?  In my first post I mentioned how Medicare, only since January of 2016, has been paying its doctors to have an end of life conversation with patients.  There are other important changes to medical care for elders as well as others with serious or chronic illness.  I am thinking of palliative care and hospice care – different types of medical care but with the common value and goal of treating the whole person, not just the medical problem which the patient presents.  Hospice care has, in addition to its provision of medical care, a focus on spiritual care as well as counseling – often done with social workers with the patient as well as their family members.

We must remember that death is not simply a “right”, it is a normal part of life.   Focusing on the quality of life is obviously challenging when there is terminal pain involved or a chronic illness that causes that pain.  In the context of Prop 106, death is treated as a right, to be exercised in order to vanquish that viatlity- and quality of life-robbing illness that would cause death its own time.

I think we should give our palliative and hospice care specialists just a bit more time and open our minds to more life-affirming options that are truly compassionate medical care of the whole person.   I liked what this article about palliative care from the NIH had to say:

A comprehensive psychosocial and spiritual assessment allows the team to lay a foundation for healthy patient and family adjustment, coping, and support. Skilled expert therapeutic communication through facilitated discussions is beneficial to maintaining and enhancing relationships, finding meaning in the dying process, and achieving a sense of control while confronting and preparing for death.

There are choices besides dying in a hospital, alone and in pain – or what Prop 106 offers.  Let’s not give up hope for ourselves just yet.  Let’s not make this failure of medicine’s ability to effectively treat our end of life conditions or intractable pain, a failure of our humanity!

©Barbara Cashman 2016   www.DenverElderLaw.org