The Dementia Directive – Nuts and Bolts

An Empty Chair

This is the third and final installment of my series on the dementia specific advance medical directive. This one is about the nuts and bolts of the contents of the dementia directive. And yes, it’s on the long side. . . .

Rule 1:  Remember that simply filling out a form will not make your wishes magically known to the world and automatically enforced according to your intentions.

You have to tell people, like your health care agent, the successor agent and maybe others as well – what you want.  You can’t make them enforce the document if you are cognitively compromised or incapacitated – this is why you must be selective about whom you select to carry out your wishes. 

If you want to go through with executing the dementia directive, you must know that you need to have detailed discussions with loved ones and decision-makers(like health care agents) so that you can clearly communicate your wishes as well as answer questions about an agent’s and/or a loved one’s ability or willingness to make such difficult decisions.

Don’t pretend you can take the easy way out on this downhill run – the simple act of filling out a form will not accomplish your goals. Over the years I have talked with more than a couple adult children who found or became aware of their deceased parent’s living will after the parent passed away.  I think that people who wish to have an “aggressive” dementia directive followed must be prepared to ask that their health care agent go to court on their behalf to uphold its provisions.  Why? The states which currently allow for medical aid in dying (including Colorado) do not have provisions which would extend to patients suffering from dementia (they must be a hospice patient) nor do they allow for a health care agent to obtain life ending medication on another’s behalf. 

Question: Would an aggressive living will provision allow a health care agent’s direction that a care facility discontinue spoon feeding a person with advanced dementia be enforceable? 

Answer: It depends or . . .  I don’t know.  

The doctor-authored forms highlight the importance of giving a copy of the directive to your loved ones and your doctor, but keep in mind that your doctor is not going to be the person responsible for enforcing the provisions of your dementia directive.  That is the job of your health care agent, so this is why it is of paramount importance to choose the right person for this important job and make sure you have answered questions about how the person is to perform that job.  Keep in mind that a number of physicians I have spoken with over the years feel that only a “fresh” advanced directive is worth following and the dementia directive – due to the typical years-long cognitive decline and long period of a patient lacking decisional capacity – could make for complications with medical practice.

Rule 2: Provide just enough details, but not too many.

“Dementia” is a broad condition or disease where mental ability declines and is severe enough to interfere with an individual’s ability to perform everyday tasks, including managing finances (often evident in early to mid-stage dementia) and providing informed consent to medical treatment. Dementia includes dementia as a disease process and its related disabilities, Alzheimer’s disease, mixed dementia, Lewy body dementia, vascular dementia, frontotemporal dementia, as well as other types of dementia and can include a “behavioral” expression

This link contains Dr. Barak Gaster’s Dementia Directive form.  That form goes into quite a bit of detail about quality of life issues related to self-determination along a continuum from mild to moderate to severe dementia.  From my perspective and experience, I like the detail the directive provides but the details could also create ambiguity and potentially produce guilt on the part of family (members or caregivers) in that it provides direction to not receive medical treatment such as antibiotics.

Question: Can I include the dementia directive as an addendum to my Colorado Living Will?

Answer: Yes!

This is an option in Colorado because you can include a reference to “other directions” in the Colorado form.  You can find one here on the Kaiser website, the website from which the form was taken (the Colorado Advance Directives Consortium) is no longer operative.  Here’s one suggestion for additional instructions:

If I am conscious of my surroundings but have an advanced stage of dementia, as defined below, that will likely be fatal, and I am consistently and permanently unable to do any of the following (_____) communicate verbally or in another meaningful way, (_____) swallow food and water safely, (_____) care for myself, and (_____) recognize my family and other people, and, in my physicians’ judgment, it is very unlikely that my condition will substantially improve, I now direct that: 

a. ____ I not be fed, through the assistance of another person, or by other means. 

b. ____ I not be given fluids if I cannot swallow on my own.

c. ____ I not be given medicine other than pain-relieving drugs, which may be delivered intravenously if deemed necessary. 

Here’s the final bits…

Here’s a link to Kaiser Health Network’s article from last year about an “aggressive new advance directive” which would let people express in advance their preference that, in the event they experience dementia which progresses to late-stage (and can last for many months and sometimes years) they be allowed to refuse food. 

Note that the New York directive allows two options: (1) a refusal of all oral assisted feeding; or (2) feeding assistance focused on comfort only.  You can read more about this “New Advance Health Care Directive Developed For those Who Fear Dementia” and find a link to download the NY directive here.

Finally, there is yet another form for Washington state, which is known as “End of Life Washington’s Alzheimer’s Disease/Dementia Mental Health Advance Directive,”  which is specifically NOT an advance medical directive but is rather a “mental health advance directive.”  Notwithstanding the fact that AD and other forms of dementia (Pick’s disease, Lewy body dementia in Parkinson’s etc.) are neurodegenerative diseases are medical in nature and not “mental” or behavioral health disorders.  I find this document confusing for this reason.  How could anyone be expected to distinguish between the provisions of  two separate advance directive documents – one medical and the other mental health – when the affected person has advanced dementia?

While the Death With Dignity folks have put their support behind the Washington form, it is unlikely that such a mental health advance directive for dementia would be recognized in other states.  One of the interesting aspects of AD is its challenge to modern medicine’s boundary between neurology and psychiatry, and AD remains a neuropsychiatric disorder. It is listed in the DSM-V as a neurocognitive disorder,  If someone is but AD remains a medical illness and not a psychiatric one.  Happy planning!

© Barbara E. Cashman and www.DenverElderLaw.org  2019. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Barbara E. Cashman and www.DenverElderLaw.org  with appropriate and specific direction to the original content.

Planning for Aging

Florentine graffiti… what me worry?

How does one assess the value of planning for one’s retirement, potential incapacity and/or eventual demise?  That is a very personal assessment, notwithstanding that the failure to plan has enormous financial consequences – for the individual, their loved ones and society as a whole.  Perhaps a prime and popular example is the failure to make advance heath directives – including appointing an agent under a health care power of attorney and signing a statement of end of life wishes – a/k/a a living will or in Colorado the Declaration as to Medical Treatment.  Read here for more useful information from the Colorado Advance Directives Consortium.  Many of us, perhaps most, would rather not entertain the idea that our lives will eventually change.  Our lives change every day, but whether we mark those changes is up to us!

“In the beginning is relation”

This famous quote by philosopher and theologian Martin Buber is a favorite of mine.  In my line of work relation and relationships are keys to planning and realistically assessing how far one can plan as well as the extent to which we must rely on others to assist us in the execution of our planning.

Aging and planning can give us the space to reflect on our values, what has been and remains important to us, and planning can also take much of the burden off our loved ones in the event we face a health crisis during we might be unable to make decisions.

I recently came across Sharona Hoffman’s 2015 book “Aging With a Plan,” and found it very insightful.  Hoffman is a law professor and, like many of us who practice in elder law, has life experience with an aging and frail parent.  She uses that experience, along with a systematic big picture discussion of a realistic conversation to consider all the alternatives in making plans for one’s aged self.

Many of us assume that, if we have lived in our home independently for 30+, we would never have an intention of leaving that space of storied independence and autonomy.  I note here that many elders (I’m including a number of clients and others) are coming to understand that there are good and workable alternative options for housing and community involvement that can nourish and sustain one’s basic human need to be part of a community and to contribute to that community.

I liked Hoffman’s approach to her book because it is founded on the importance of maintaining relationships, through social interaction and being useful (at whatever level).  The latter, being useful and having something or someone to take care of, is a fundamental premise in the “green house” nursing home alternative.  You can read about that in an article here from the Atlantic Monthly, or more about Dr.  Bill Thomas in a 2016 Washington Post article.  But I don’t want to get off track in talking about “green houses”  . . . .

So what are the components of a plan for aging? We are all familiar with retirement planning (even if the majority of us barely engage in such planning) and its focus on finances.  I think part of the repulsion in retirement planning is the focus on finances, many people simply find the savings part a difficult conversation and so stop before considering other aspects of retirement planning or aging with a plan.  I consider neither of these often heard comments a plan:  “X will never happen to me because my family doesn’t live that long;” or “if I can’t go to the bathroom or feed myself on my own, then just shoot me.”  We still don’t understand the role of genetics and epigenetics on the aging process very well and not deciding this very grown-up matter of “what happens if” means that we are shirking the responsibility be forcing someone else to choose for us…..

I recommend Hoffman’s book – it’s easy to read and its focus on several practical concerns including: finances; elders driving; person-centered (not disease-based) health care; and the importance of an exit strategy; demonstrate that the book is very useful – for an elder or elder-in training, or for an elder’s family member to assist with the awkward place of overcoming years of inertia.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

Caregiving is Not for Sissies!

Sideways Sky

 

In my latest issue of Bifocal, the bi-monthly publication of the American Bar Association’s Commission on Aging, I noticed a helpful new resource entitled Ten Legal Tips for Caregivers. Here’s a link to the document.  In case you’re wondering who that “typical” family caregiver is, a recent New York Times article written by a resident physician, identified her as

a 49-year-old woman caring for an older relative — but nearly a quarter of caregivers are now millennials and are equally likely to be male or female. About one-third of caregivers have a full-time job, and 25 percent work part time. A third provide more than 21 hours of care per week. Family caregivers are, of course, generally unpaid, but the economic value of their care is estimated at $470 billion a year — roughly the annual American spending on Medicaid.

The comments section of this NYT article is both telling and heart wrenching, as there are so many stories of people who recount many of the article’s observations that this massive group of volunteer caregivers put themselves at risk in ways from which it may be difficult to recover.  There is the great financial risk, cutting back on work in order to care for an elder parent.  This financial strain is measurable but probably the more disturbing numbers comes from other studies concerning the lingering health effects (like depression, anxiety and chronic disease) of extended caregiving.  A JAMA article from 1999 entitled “Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study” quantify the heightened mortality rates of caregivers.

So, enough of this gloom and doom, eh? Don’t let me get started on how this volunteer army’s numbers will be forced to multiply dramatically in the event the Affordable Care Act, with its Medicaid expansion services which many seniors now enjoy, is repealed.  Considerable portions of the Medicaid programs for elders will likely simply disappear under the block grants which could replace the ACA’s funding of these programs, which has taken several years to put in place.   Changes to Medicare from the proposed legislation known as the AHCA could compromise Medicare’s viability in a shorter time frame. That’s another blog post!

Olay, so what steps can a caregiver take to protect themselves legally?  The tip sheet identifies ten different steps or competencies which the caregiver can utilize to better assist the elder for whom they provide care as well as to protect themselves:

  1. Understand decisional capacity
  2. Know what legal authority you have
  3. Appoint a health care agent
  4. Complete a financial power of attorney
  5. Manage Social Security/ Veteran’s benefits
  6. Know your rights of access to health care information
  7. Know the signs of abuse, neglect and exploitation
  8. Know your rights if you face Family Responsibilities Discrimination (a form of employment discrimination)
  9. Understand your rights under the Family and Medical Leave Act (federal legislation)
  10. Consider a Personal Care Agreement (to counteract some of the financial losses described above)

This tip sheet, like other public resources made available by the American Bar Association, contains useful and helpful information.  It is a welcome reminder for caregivers that they should not wait until a health crisis to figure out the basics of how best to provide care for their elder.  Making advance care arrangements and learning more about how to manage information and choices for another (using durable powers of attorney) can help take some of the anxiety out of the “what if’s” so many caregivers face on a regular basis.  Turns out that taking care of the caregiver allows for better care to be provided for the elder who needs care.  That’s all for now!

© 2017 Barbara Cashman  www.DenverElderLaw.org

 

End-of-Life Options: Medical Technique Portrayed as a Right pt. 1

Ketring Lake at Dusk

For the next few posts I promise to vary my topics a bit, so I won’t be writing solely on the new Colorado law and its implications.  But for this post, I wanted to spend a bit of time on the “big picture.”  I had the privilege today of spending the morning listening to Jennifer Ballentine’s thoughtful and informative presentation on the new law and what it means in practice and policy for healthcare providers and facilities.  Many of the folks there were from the hospice and palliative care community, several different residences (skilled nursing facilities, assisted living facilities and continuing care retirement communities) were represented and of note were the attendance of several first responders (EMS or firefighters). Perhaps in a subsequent post I will delve into the dilemmas of EMS providers who may be unaware of a person’s use of life-ending medication under the new law (as they are sometimes unaware of do not resuscitate orders).   Many different people in attendance with lots of challenging questions.   But only some of those questions could be answered by reference to the new Colorado law.

The situation with the new law was an abrupt sea change.  The day before this new law was certified by the governor all of these folks from their diverse communities were continuing to discourage very ill people from thinking and possibly acting upon suicidal thoughts and wanting to end it all.  Once the law was certified, then BAM – all that changed.  No easing into any transitional period as California and Vermont enjoyed (with their “end of life option act” and “patient choice at end of life” statutes respectively) . . .

I will try to steer clear of the pseudonymous quicksand of what these types of medical services provided are called: physician assisted suicide, physician assisted death, (medical) aid in dying, (voluntary active) euthanasia, death with dignity, but it is challenging when there is no clear marker of when living is perhaps coming to a close and dying is well-nigh.    I liked one blogger’s beef with all these euphemisms and her suggestions that we perhaps call it “assisted self-administered lethal ingestion.”  I think this descriptor is best because it is so technical sounding and our new law champions a medical technique, with precious few indicia or garb of a “right” to die.

To wind up, I will turn to a quote from the late poet, novelist and social critic James Baldwin:

Perhaps the whole root of our trouble, the human trouble, is that we will sacrifice all the beauty of our lives, will imprison ourselves in totems, taboos, crosses, blood sacrifices, steeples, mosques, races, armies, flags, nations, in order to deny the fact of death, which is the only fact we have.

     James Baldwin, The Fire Next Time

How to identify the boundaries of death versus suicide – where are the distinctions here among all the different labels? Our new law does explain that the actions in accordance with the procedure set forth in the End of Life Options Act do not constitute suicide, assisted suicide, mercy killing, homicide or elder abuse.  Does this move our conversation forward?  Can a law do this?

© 2017 Barbara Cashman  www.DenverElderLaw.org

 

End of Life Options and Deathbed Ethics – part 1 of 2

Springtime in Assisi

At a former client’s request, I am writing a bit more about the ballot initiative Proposition 106 on the November ballot for Coloradoans.  Read the text of the initiative here.  It was formulated as Prop 106 after two unsuccessful attempts to get a version of the Oregon statute through the Colorado legislature.  After the bill died in the spring of 2016, supporters made good on their threat to take it to the voters in a ballot initiative.

Why do I bring up “deathbed” ethics here? Because I think there is an important and a vital distinction between allowing for an easier death, a good death – which is the historical meaning of euthanasia, and the causing of death by hastening it with a life-ending prescription.  In our post-modern America, we have become estranged from death and dying.  Dying has come to be seen, as life has for so many elders, as the management of a medical problem.  This is recently changing as more people are able to die at home and with the wider familiarization with hospice and palliative care.  Most of us care about the quality of life and so, consequently, about the quality of a death or a dying process.  Throughout history, we humans have always tried to control the way in which we die.  But is dying an accomplishment or part of a life process?  How do we master death?  I am unsure of the answers to these two questions, but I can tell you that Prop 106 has one answer, to this question – that is to take one’s own life with life-ending medication, which proponents have historically termed “death with dignity.”

I find offensive the idea that the only “death with dignity” is by one’s own hand and within a time frame selected by the one choosing to end their life.  I think this is no mastery of death at all, but represents an even deeper form of denial, an escalation if you will, of the denial of our own mortality.  It’s as if we say to ourselves “I’ll show you death – I will choose you and not allow you to choose me!”  This reminds me of a line from a favorite children’s book – Arnold Lobel’s Frog and Toad Together when the two friends (observing a hawk overhead) scream together “we are not afraid!”

We live in a death-denying culture and I see this Prop 106 as simply another means of denying death, but this step requires the endorsement of others on two levels: first, in the form of a change in the law to allow for assisted suicide or physician assisted death; and second, in the form of the fundamental change in the way doctors treat patients.

Americans love to discuss and debate the meaning of our rights and how our rights are best protected.  We tend to focus on individual rights in particular and sometimes we tend to forget that for each right there must me some relationship for its exercise, some context for it to be meaningful and substantive.  What if our focus on this asserted individual “right” is more akin to a coping mechanism (maybe a dissociative pattern?) in the face of suffering?  In this sense, Prop 106 represents a solution to a different problem, a philosophical problem of human existence and not the one described in the initiative.

  1. The Right to Die

The “right to die” is a misnomer for what this ballot initiative –– is about.  Suicide is no longer a crime in any U.S. state.  People already have a right to die as such (without another’s assistance) and people take their own lives every day. The right which the “end of Life Options” initiative concerns is the ability for a class of terminally ill persons to be able to get a prescription from their doctor (without criminal penalty being imposed on the medical provider) for life-ending drugs. Prop 106 refers to these as “medical aid-in-dying medication”, but I have difficulty calling them medication, because that would be for treatment, but this initiative includes the ending of a patient’s life as medical treatment.  Is this a big deal? Yes, I think so!   Colorado law currently provides that a person aiding another’s suicide is felony manslaughter (Colo. Rev. Stat.  18-3-104(B)).

This “right to die” which is Prop 106, is a right, the exercise of which, is premised upon the necessary involvement of another person (and institution) for its fulfillment.  If you are interested in reading further about this, you can take a look at the U.S. Supreme Court’s 1997 decision in Washington v. Glucksberg, in which it determined that the asserted liberty interest (under the Due Process Clause) had no place in our legal, medical or other traditions and to decide otherwise, would force the Court to “reverse centuries of legal doctrine and practice, and strike down the considered policy choice of almost every state.

  1. The State’s Stamp of Approval on the Medical Profession’s Ability to Prescribe Death-Causing Medications to Patients without Criminal Penalty

Whether we call this active euthanasia which is described in Prop 106 as a “right to die,” or a self-inflicted “mercy killing,” Prop 106 would change the most personal act of whether to end’s one’s own life into a a matter of policy, by forcing endorsement of voters and the medical community to institute a fundamental and historical change in the doctor-patient relationship.

Some patients would say that their right to receive life-ending medication should trump this historical relationship, but I find it incredibly inconsistent that, only since January 2016, Medicare has begun paying its doctors to have an end of life conversation with patients.  This was a big step and an important recognition from a system that has fully supported viewing people as medical problems and not as people!  Additionally, CMS (the Centers for Medicare & Medicaid Services) recently issued has new regulations that enshrine “person centered care” for residents of long-term care facilities.  I think this forcing of a doctor’s hand to assist our own in choosing to take our own life is simply impatience with the problem of living – and our difficulties discerning the difference between what we recognize as living and as dying are the problem. Prop 106 is not the solution to either of those challenges.

I will continue this discussion next week when I delve further into the stated goals of some proponents and what this law allow and its implications for frail elders. . . .

© 2016 Barbara Cashman  www.DenverElderLaw.org

Colorado End of Life Options – A Follow-Up

denver elder law

Spring Orchid at DBG

 

I’m writing this as a follow-up to my last post, which elicited a heartfelt comment from a subscriber and a fruitful discussion on LinkedIn. . .

Voluntary euthanasia is when death is chosen by a person, when they are killed with their own expressed consent.  These types of requests and the consent needed for such must be clear.  To review a bit – passive euthanasia is when a person makes an advance directive in the form of a living will in which the person indicates the level of medical intervention – or lack thereof – in the event they are in an end-of-life scenario.  In the Colorado Medical Treatment Decision Act, Colo. Rev. Stat. 15-18-101 et seq., we distinguish between persistent vegetative state and terminal condition as the triggering circumstances for the application of the living will.  Persons dying according to the terms of their living will may direct in advance the withholding or withdrawal of certain medical interventions which would tend to prolong or sustain life. The Living Will is in essence a statement of wishes and the persons involved in providing for assisting with another’s grave medical condition must be aware of its existence and its contents.  Unfortunately, what sometimes happens is that an elder goes to a senior center or some other place to fill out a living will form, but the elder neglects to inform their family members they have done so.  No one knows of its existence or contents and so it is of no value.  This is why having “the conversation” – especially with one’s health care agent – is so valuable!

So, let’s get on with the discussion at hand.  Many of us have experience with active euthanasia in the form of “putting down” a beloved pet.  When my dear old dog Pepper was nearly paralyzed, we made the decision to euthanize her after considering the alternatives.  When two of my sons and I were with Pepper at the vet’s office (sitting on the floor with her, stroking her and telling her how much we loved her), she was injected with the drugs that would end her life.  The vet commented to me – “I wish we could do this for people.”

This is the paradox of passive and active euthanasia – that active euthanasia is more humane in that it hastens the death to alleviate the suffering, while passive euthanasia requires the withholding of the means of sustaining life – which means a person can go quickly if they are dependent on breathing support or. . . .  they will slip away slowly as they starve to death.

It occurs to me that many of us don’t think of the living will as a statement as to the form of euthanasia preference – or if there is no preference for such.  Is the living will a document that tells our loved ones to “let us go” or is it a document that gives the patient’s preference as a statement of self-determination, to be free from the unwanted interference of others?  Can it be both?

There are of course a wide variety of living will forms available.  While the documents are acceptable forms of stated preferences regarding euthanasia, different religious communities have their own preferred documents in compliance with their laws or traditions.  What is the distinction between letting someone die by not intervening and allowing a person to die by their own choice with the assistance of a doctor?  Is there really a bright line between the two?

Getting back to the “letting go” versus “self-determination” purposes of the living will, how do these play out in the context of active euthanasia or physician assisted death (as in the Colorado End-of-Life Options initiative)?  These tensions are even more pronounced in this context.  Where is the distinction between one’s not wanting to be a burden on loved ones and the subtle coercion that a gravely ill person may feel to “get on with” dying so that their loved ones can be liberated from the burdens of caring for the sick person?  I certainly am not suggesting answers.  What I am concerned about is that people seem to look for answers without regard to the question and what it entails or requires.

An exclusive focus on the self-determination rights of gravely ill people to be statutorily allowed to take their own lives – with the assistance of medical doctors – skews the discussion.  I liked Jennifer Ballentine’s article entitled “Law & Sausage: Physician Assisted Death and the Solution to Suffering.”  You can read it here.

The attraction is clear – to focus on the individual right to extend medical self-determination to include physician assisted death is a very American pastime!  We have a long tradition of championing and enshrining individual rights.  But in the context of active voluntary euthanasia, or end of life options, such exclusive focus myopically steers that discussion away from the critical context of the exercise of such a right [author’s disclaimer: I wear corrective lenses for correction of nearsightedness].  This right would certainly not exist in a vacuum.

I don’t think it is too much to consider a look at the bigger picture here and to identify in advance of our ballot choices this November the many unintended consequences which would flow from our choice.

© 2016 Barbara Cashman  www.DenverElderLaw.org

The Colorado End of Life Options Act – On Our Ballot This November

Spring in Assissi

Spring in Assissi

 

Will Coloradans approve the ballot measure to allow physician assisted death in Colorado?

This is an update to previous posts about (unsuccessful) proposed legislation concerning physician-assisted death in Colorado and the ballot initiative which will be put in front of Colorado voters this November.  Click here to read the Colorado Secretary of State’s final version of the initiative.  Today’s post is a further conversation about this highly-charged topic.  I enjoyed reading this recent Denver Post piece by Jennifer Brown about use of language and terminology in this initiative and the wider debate.

The first observation is that I’m using the term I have previously employed – physician assisted death.  When I typed in the term to my search engine, what appeared in the results was “physician-assisted suicide” defined here as

The voluntary termination of one’s own life by administration of a lethal substance with the direct or indirect assistance of a physician. Physician-assisted suicide is the practice of providing a competent patient with a prescription for medication for the patient to use with the primary intention of ending his or her own life.

I use the term death because it is less inflammatory, but it is – by the very nature of the procedure – suicide.  Assisted death can incorporate both physician assisted suicide and voluntary euthanasia, and I note this is important.  While we’re talking about terms to describe the life-ending process which is facilitated by a physician, let’s look at a few important terms to help keep the terminology straight.

Euthanasia comes from the Greek meaning “good death” and the Merriam Webster online dictionary defines it as:

 the act or practice of killing or permitting the death of hopelessly sick or injured individuals (as persons or domestic animals) in a relatively painless way for reasons of mercy.

Within the definition of euthanasia are different types of euthanasia, including: voluntary, non-voluntary and involuntary.  Today I consider only voluntary euthanasia which consists of two kinds – active and passive.

Passive voluntary euthanasia: When someone executes a living will to direct that no life-sustaining procedures or artificial nutrition and hydration be offered in the event a person (known as the “declarant” for purposes of a living will) is determined to be unable to provide informed consent and suffers from a persistent vegetative state or terminal condition.  This practice (with important controls promulgated by state laws) was made legal by the U.S. Supreme Court decision in Cruzan v. Director, Missouri Dept. of Health, 497 U.S. 261 (1990).  It was the first “right to die” case heard by the U.S. Supreme Court, and discussed important aspects of self-determination, liberty interests and due process in the context of Cruzan’s family’s attempts to have Nancy Cruzan’s previously expressed wishes (orally expressed, not in writing) upheld.

Active voluntary euthanasia: This differs from the widely accepted passive form in that passive euthanasia involves a refusal or withholding of treatment and active euthanasia involves an intervention to give something –  a lethal prescription from a doctor – to provide the means to end a life.  Herein lies the distinction between refusal to provide or continue to provide treatment (recognized in our living wills) and the active choice of one’s own death, or suicide.

Can there be any middle ground here?  Perhaps.  If you consider the arguments for wider acceptance and use of hospice and palliative care – these focus on the treatment of the whole person to manage pain, a terminal condition or end of life medical care, and not just from the more mainstream exclusive perspective of medicine’s focus exclusively on a patient’s medical problems, often to the detriment of the patient’s quality of life.  So here is the question – if patients have access to good quality palliative and/or hospice care at the end of life, then is assisted death really necessary?  One way of looking at this is to consider that the rights-focused physician assisted death doesn’t adequately take into account the scope and range of palliative and hospice care which is presently available.

As we continue to age and live with (read: have our lives prolonged by) more drugs and medical devices, how we choose to remove those supports (like a pacemaker or similar devices) is part and parcel of our choice of living as much as it is how we choose for ourselves (and others) how we manage the end of our lives.  Here there is a distinction between the legal terrain (like a medical POA or a living will) and the medical terrain (a do not resuscitate is a medical order requiring a doctor), but this is longevity in the U.S. and most people don’t live their lives consciously regarding these distinctions.  Maybe it’s time to broaden the conversation . . .

© 2016 Barbara Cashman  www.DenverElderLaw.org

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

Independence Pass in June

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

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

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

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

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

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

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

©Barbara Cashman 2013     www.DenverElderLaw.org