Deathbed Ethics, Proposition 106 and Remembering How to Die

Closed Shutters

Closed Shutters

We have forgotten how to die.  We have forgotten that it is death, as part of our life, which makes us human.  Death is just like the rest of our life – unpredictable and subject to constant change. That is what we have forgotten.  We have become obsessed with our identity and being “in control,” in such ways that support our limited notions of autonomy.  This is superficial, to say the least and I don’t think it has anything to do with preserving anyone’s human dignity.

In Proposition 106, physician assisted death (PAD) or physician assisted suicide is put forward as a “right” to be asserted by a limited and defined class of individuals suffering from a terminal illness who are not expected to live for more than six months.  But wait, this sounds like qualifications for a hospice script – doesn’t it?  Have people who are advancing the recognition of this “right to die” fully explored the parameters of hospice and palliative care?  I think many have not.  It is much simpler, much more straightforward and slogan-empowering to clamor for a right than it is to take a “wait and see” approach – which is what most of us end up doing anyway. Why do I bring up palliative and hospice care in this context? Because I think the need to advance any “right to die” here is superfluous to the already existing but not well-known by the public services of hospice and palliative care health professionals.

In my previous posts, I mentioned the 1997 U.S. Supreme Court decision of Washington v. Glucksberg, 502 U.S. 702, 737 (1997) and I want to follow up just a bit on that decision and its wake.  I’m thinking particularly of Justice O’Connor’s concurrence, referring to pain management palliative and hospice care:

In sum, there is no need to address the question whether suffering patients have a constitutionally cognizable interest in obtaining relief from the suffering that they may experience in the last days of their lives. There is no dispute that dying patients in Washington and New York can obtain palliative care, even when doing so would hasten their deaths. The difficulty in defining terminal illness and the risk that a dying patient’s request for assistance in ending his or her life might not be truly voluntary justifies the prohibitions on assisted suicide we uphold here.

The “right to die” in terms of PAD would appear to be promoted at the expense of the prospect of any effective management of pain.  The further juxtaposition can be seen in these two articles by leading legal scholars: Robert Burt’s “The Supreme Court Speaks – Not Assisted Suicide but a Constitutional Right to Palliative Care,” in 337 New England Journal of Medicine 1234 (1997) and Erwin Chemerinsky’s “Washington v. Glucksberg Was Tragically Wrong,” in 106 Michigan Law Review 1501 (2008).

So why do I write another post about Prop 106? Because the “right to die” as it concerns a patient’s right to end their pain . . . is simply too misleading.  Terminal pain management, about which most people want to believe this proposed legislation concerns itself – is another matter separate from “the right to die.”  This is borne out by the Oregon statistics from 2015 which I referred to in my previous post.

Let’s set the record straight here.  The information collected from Oregon about those persons choosing to fill the prescription for the life ending medications did so based on their diminished enjoyment of life, their loss of autonomy, and their perceived loss of dignity. A surprisingly small number of people mentioned “inadequate pain control” as a reason to choose assisted death from a physician.  Why might this be that pain control factored in so small a number of responses? We don’t know because the statistics available don’t offer further information.  But I think it is not a stretch to conclude that most of those folks choosing to get a scrip filled for lethal medications already had their pain pretty well managed, thanks to hospice or palliative care.

The real reasons for these folks to get the medications was to manage the psychic pain of living at the end of their life, in which their terminal illness compromised their ability to live independently, autonomously and with the dignity with which they had previously known.  This is a qualitatively different kind of pain! This pain may be incidental to the “pain of dying” but it is most certainly a pain of living, living with the uncertainty of what challenges tomorrow will bring.  We have simply forgotten this important detail!

What kind of patient autonomy do we want to protect as a matter of law and public policy? I think we need to be clear about what this law would change and how it would work, and not to be dazzled by the shine of a new “right” that has little to do with the context – medical, legal, ethical or psychological – of how such a right would be exercised.  If this Prop 106 is really about saying it is okay to take one’s own life (I don’t even like saying “commit suicide” because it is fraught with moral implications that further perpetuate the underlying loss of the person’s survivors), then let’s be clear about that.  I believe that is the implicit underlying message, but few people are comfortable with looking much under the surface of the legislation and its long-term unintended implications.

We are talking about the pain of living a life without the independence and autonomy to which we had grown accustomed and the terminal disease or condition robs the patient of that dignity of autonomy.  I will be the first to state I am not equipped to decide for another when their terminal pain has reached such a level that palliative or hospice medications will not suffice to manage the pain.  But I think the pain we are talking about is not the physical pain, which palliative and hospice care providers have become experts in managing, no we are talking about the pain of living a life, the end of which is one “we have not chosen.”  It is implicitly stating – I do not want that challenge and I choose death instead.  Let’s be honest about that choice and our ability to choose it!

In some important respects, Prop 106 presents essentially a right to die versus a right to hope.  If we are in the midst of a terminal illness, rapidly advancing in its ravages of our bodies and our abilities to function independently, we are much less likely to give up hope if we feel supported, if we are not made to feel as if we are a burden on others.  Here physician assisted death resembles the choices underlying suicide as they vary in number among different cultures across that world.  Suicide has been characterized by Durkheim as related to sociocultural factors and in particular the integration of a person in family, economic, political and religious life.   I posit that we ought to be looking to each other for assistance, for hope, especially in the face of imminent death, and not be so eager to show the door to those of us who feel they have become a burden or simply want to “choose death.”

© Barbara E. Cashman 2016   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

Colorado Aid in Dying – Coming to Your November Ballot?

 

Seated Chairs

Seated Chairs

This post is an update on the reincarnation of the proposed legislation in the Colorado End of Life Options in its new form as a ballot initiative known as Colorado Aid-in-Dying (Initiative #145).  In order to qualify for the November ballot, 98,492 valid signatures must be collected by August 8, 2016.  This may be a situation for which the ballot initiative was designed, where the public can exercise the power to create a new statute.  Colorado is one of a number of states – mostly west of the Mississippi- that allows initiated statutes and amendments. In case you’re wondering how to go about such an effort, The Colorado Secretary of State offers a guide!  The website ballotpedia lists the text of the initiative as the following:

Shall there be a change to the Colorado revised statutes to permit any mentally capable adult Colorado resident who has a medical prognosis of death by terminal illness within six months to receive a prescription from a willing licensed physician for medication that can be self-administered to bring about death; and in connection therewith, requiring two licensed physicians to confirm the medical prognosis, that the terminally-ill patient has received information about other care and treatment options, and that the patient is making a voluntary and informed decision in requesting the medication; requiring evaluation by a licensed mental health professional if either physician believes the patient may not be mentally capable; granting immunity from civil and criminal liability and professional discipline to any person who in good faith assists in providing access to or is present when a patient self-administers the medication; and establishing criminal penalties for persons who knowingly violate statutes relating to the request for the medication?

Yes, that is quite a sentence, isn’t it?! An Aurora pediatrician, Dr. Michelle Stanford, has filed a motion for rehearing with the Colorado State Title Setting Board, regarding the Title of Initiative #145, on the basis that the title and submission clause do not fairly express the true meaning and intent of the proposed state law.   You can read the opening brief before the Colorado Supreme Court here.   As to the form of this ballot initiative, keep in mind that Washington voters approved their state’s Death With Dignity Act by means of a statewide ballot initiative in a general election in November of 2008 (that was the second try at voter approval – the first attempt in 1991 was unsuccessful).

So – to the language of the initiative. . . .  We are back to the term “mentally capable” again, which is not otherwise found in Colorado law.  It is not clear to which part of the sentence the term “mentally capable” refers, which is troubling because there is no requirement of counseling in this initiative’s question, only for an evaluation in the event one of the physicians believes the patient may not be “mentally capable.”  This forms the basis for some troubling ambiguity.  Is it not capable to give informed consent to understand the life-ending nature of the prescription sought or – not capable due to some depression or other contributing mental health or other reason?  I think both the question and a clear answer matter greatly!

I will reiterate again my reservations about the dearth of reporting and other requirements which were lacking from the second version of the proposed legislation, which was killed in the legislature in spring of this year.  This question of physician assisted death is not at all likely to go away, and the debate could certainly benefit from less rhetoric and more practical considerations.  Keep in mind most states still have outright prohibitions on assisted death or suicide in either their statutes or based on case law. A handful of states (Wyoming, Nevada, Utah, West Virginia and North Carolina) have no specific basis in statute or case law and are ambiguous as to the legality of physician assisted death.  In 2009, the Montana Supreme Court in Baxter v. State of Montana, construed that state’s Terminally Ill Act in such a way as to allow physician assisted death.

With a goal of considering what is the dignity sought after in the physician assisted death initiative – a reprieve from intractable terminal pain and/or the dignity of choosing the time and circumstances of one’s demise?  Interestingly, a fair number of Oregonians and Washingtonians who availed themselves of their states physician-assisted death laws did not actually die from the lethal cocktail of medications.

I recently read a piece by the former Boston Globe columnist Ellen Goodman, published in the June 12, 2016 Denver Post.  She is also the founder of The Conversation Project, an invaluable resource for people looking to make advance health care directives and other important arrangements regarding end-of-life care.  I refer many people to the Conversation Project website.

A re-evaluation of the way Americans die is already underway (thank goodness).  To the extent that the physician assisted death debate sheds light of the need for ALL ADULTS (read: anyone over 18 years of age) to think about and discuss their end of life wishes and communicate them to others in meaningful ways, then this debate is a productive one indeed.  For many adults that means not simply filling out some living will form at a senior center and then placing it in a safe deposit box or secret location where it will only be discovered after your death!

I still talk to folks who do not wish to have the end of life discussion because  . . .  well, it’s not a lot of fun, and besides – they don’t have a life threatening illness. . .  Based on my experience, the point when someone is in the throes of a diagnosis of or treatment of a life-threatening illness is the worst time to have that conversation.  Do it now!

© Barbara E. Cashman 2016   www.DenverElderLaw.org