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!

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

 

More About Proposed Colorado End of Life Options Act

Italian Arch

Italian Arch

 

After my recent post about this bill in the legislature entitled the Colorado End-of-Life Options act, I was contacted by someone who was concerned that I had omitted some very important information about the proposed legislation.  I am posting further on this topic to provide more detail about the legislation and also to express my concern, as an elder law and probate attorney, about the particular implications of those important details – which I missed the first time around.

The bill contains no requirements regarding documentation and reporting of any of the processes described in the bill.

This is a big departure from the 2015 version of the bill – which contained provisions concerning reporting and documentation for the public health record (Colorado Department of Public Health and Environment) or the patient’s medical record.

Why is this a big deal?

Other states with similar legislation have documentation, reporting and review requirements.  This is for several good reasons, but the two with which I am concerned – protecting a vulnerable population of elders at risk of abuse safe from potential coercion and ensuring their consent to end their lives is one with consent given which is sufficiently sound and documented.  This reporting is to keep track of the many important details surrounding physician assisted death (PAD).  Without reporting requirements, there will be no way to know how the state’s PAD is working or not working.

Elders and vulnerable elders (as defined in Colorado’s mandatory reporting of elder abuse or exploitation law) have not generally been at the forefront of the PAD movement.  However, much of our death-denying and youth-glorifying culture is obsessed with the fear of losing one’s autonomy, losing control over one’s choice – and these fears factor substantially in the PAD debate.  As a civil rights issue, PAD focuses on self-determination and autonomy to allow for an individual’s decision to end one’s life with PAD.

My concern is that a population of elders could be coerced and exploited into ending a life prematurely and without documentation and reporting requirements for PAD, there would be no information to document many important details surrounding  a patient’s death with PAD.  I believe this situation could be used by someone looking to benefit themselves by a terminally ill elder’s PAD.  So what am I talking about . . . really?

In Colorado, we have a “slayer statute,” codified at Colo. Rev. Stat. § 15-11-803.  The statute generally prevents a slayer from profiting from their act of killing another.

Many exploiters of elders use tactics not unlike those of perpetrators of domestic violence.  These can include: isolating an elder from their loved ones or community members so as to make the elder dependent on the abuser; controlling basic life activities like provision of adequate nutrition, sleep deprivation or medication mismanagement; and devaluation of the elder’s dignity and personhood through words and action.

The state of Washington, which has a physician assisted death law as a result of a ballot initiative, also has a “slayer and abuser” statute, which is a rather unique combination.  The Washington slayer statute was amended to extend the slayer statute’s application to prevent financial abusers of vulnerable adults from acquiring property or any benefit from their victim’s estate.  This amendment was done during the pendency of a will/living trust challenge proceeding brought by the adult children of an elder against the elder parent’s surviving spouse, a second wife fifty years the decedent’s junior.  Here is the Washington Supreme Court’s en banc decision in In re: the Estate of James W. Haviland, which concerns this tragic exploitation.

The linking of slayer statutes and elder abuse laws is a relatively recent development.  One aspect of the link is the massive transfer of inherited wealth that has been underway for several years now.  The sad fact is, some folks simply don’t want to wait for the uncertain date when someone dies to inherit from the person.  In my line of work, these folks are referred to as “impatient heirs.”  The vast majority will not resort to violence to accomplish their goals, but it can be difficult to determine this in many circumstances.  Here’s a link to an abstract of a recent article on Expanding Slayer Statutes to Elder Abuse in the Journal of the American Academy of Psychiatry and the Law.

Why am I combining these two issues – the Slayer Statute as it relates to elder abuse and the lack of documentation and reporting requirements in the 2016 bill? 

I don’t think it is too far of a stretch that, if this “End of Life Options” bill were to become law and not provide for ANY record-keeping, documentation for either the individual’s medical record or for the public health record, that this lack of information and reporting could provide a potential avenue for death-hastening abuse of an at-risk elder, who happens to be terminally ill and whose health status otherwise falls under the purview of this bill.  The process described in the bill, devoid of any reporting requirements, opens up a vulnerable population to be exploited by an abuser such that the cause of death could be determined to have been at the terminally ill person’s own hand . . .

In short, I believe the Colorado bill’s lack of safeguards, which could otherwise serve to prevent coercion and consent, fall dangerously short as it relates to the population of elders.  For more information about other states’ existing laws, take a look at the Colorado Health Institute’s piece from January 2016 on this topic.

Here’s a recent and well-reasoned Denver Post article on this topic that focuses on the bill’s lack of requirements for oversight, documentation or enforcement.

This debate is also happening in other parts of the US where similar bills have been introduced.  Here’s a recent article about the assisted dying debate in Canada, where there is a new federal assisted dying law.  I will close for now, but will likely be writing posts to update this very controversial topic.

© 2016 Barbara Cashman  www.DenverElderLaw.org