Longevity, Dementia and Ventilator Use

Ketring Lake at Dusk

Ketring Lake at Dusk

Longevity and dementia often go together – dementia or episodes of incapacity can be seen in some respects as the side effects of longevity.  A longer life expectancy doesn’t usually mean that it will be the quality of life that a person enjoyed – mobility, autonomy, social engagement, in the early years of retirement age.

In my practice I sometimes meet with a client who is suffering some cognitive decline.  Sometimes the type of brain disease or form of dementia can be narrowed down and other times this is more difficult.  What is vitally important for these persons is to make sure that they have advance medical directives- in the form of a health care power of attorney as well as a living will.

I should warn you that some of this post is based on a cautionary tale.  This evidenced by a recent Reuters article documenting a surge in ventilator use for nursing home residents with dementia.  The study which is the subject of the article documents the number of nursing home residents with advanced dementia – mostly women – who needed to be hospitalized and were placed on mechanical ventilators.  The use of ventilators for such hospital patients, however, did not lead to a better survival rate.  The article is instructive in noting that this is a recent and troubling development:

In 2013, among every 1,000 nursing home residents with dementia who needed to be hospitalized for some reason, 78 were hooked up to mechanical ventilators, compared to just 39 out of 1,000 in 2000, the study found.  Despite this surge, the mortality rate for these patients with mechanical ventilation remained constant at more than 80 percent.

Why is this happening? The study makes several suggestions, but a common sense answer to an important part of the question of how these patients are “ending up” with a hospital stay that includes being hooked up to a ventilator is somewhat obvious to me: these folks have not executed any health care powers of attorney or a living will.  But sadly, what might otherwise be life-prolonging intervention for many patients does not have the same effect for these elder women with advanced dementia.

One explanation of what happens when a patient has not executed a medical POA or a living will has to do with what types of services are available to these patients in the hospital setting.  The article quoted Dr. Gary Winzelberg as observing that “as long as it’s easier to access an intensive care unit bed [in a hospital] than comprehensive hospice and palliative care services in nursing homes, the trend of increasing use of mechanical ventilation for these individuals is likely to continue.”

Our health care system is not exactly “dementia friendly” when it comes to how it copes with the diminished capacity of a patient with advanced dementia who is unable to give informed consent and otherwise meaningfully participate in their health care decisions.  This is one of the reasons it is vitally important for all adults to have “the conversation” with a loved one they trust.   That conversation should ideally lead to the execution of advance medical directives – the kinds of documents that allow a person’s wishes to be upheld.

What seems theoretical and remote to so many people – is vitally important in the event the person with advanced dementia (or some other cognitively incapacitating disease or condition) wants to maintain some self-determination and the person’s family members wish to support the person’s decision to decline medical interventions like artificial nutrition and hydration and intubation (with a respirator) will become much more commonplace in the coming years as the number of people with dementia continues to grow.

So . . .  how do we “work around” these difficult challenges?

– documents relating to decision-making guidance where a person is suffering from either a terminal condition or persistent vegetative state such that they are unable to made or communicate their own decisions.

The bottom line is we must be prepared and willing to help each other through this kind of difficult time in one’s life.  The best way to do that is with just a bit of preparation in the form of a conversation and documented in a health care POA and a living will.  Now is a great time to have the conversation and remember – it should be revisited at least annually!

© 2016 Barbara Cashman  www.DenverElderLaw.org

 

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 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

 

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