Will you need a dementia specific advance directive?

Reflection on a Lake

Are you one of the few and one of the brave who is willing to talk openly about dementia – specifically what kind of care you want and how you want your health care agent to decide for you in the event you have dementia?  Based on stats from the summer of 2017, fewer than one-third of Americans have executed a living will.

So, if you are one of those persons, this series of posts is for you!

By midlife, many of us have had some personal experience with a family member or loved one with dementia.  The disease Americans are most afraid of is the dreaded Alzheimer’s Disease (AD for short) or some other form of dementia.  For some of us, it overshadows even the fear of death.  Perhaps this is because that dis-integration of the brain causes us to forget the most basic of things – who we love, what we like to do, what is our identity, and even how to die. 

In our brain-centric culture, which so often takes a reductionist view of the body as a kind of machine (e.g., the heart is only “a pump”), to lost one’s mind is the most fearsome of possibilities.

 How will you know whether you might need a dementia advance directive? [Yes, it’s a trick question….]

Over the years I have worked with a couple clients who have been diagnosed with early stage AD.  These are typically the folks who are recruited to participate in studies involving the progress of the disease and new therapies.  Informed consent for voluntary participation in these studies can be challenging. Here’s a link to an informative background paper from the 2017 Research Summit on Dementia Care, through HHS.

What are our choices?

Do nothing and hope for the best. 

This is what most of us will choose by default.  “My kids will know what I want,” I’ve heard said with a shoulder shrug.  Really? How much more difficulty do we want to add to an already challenging situation?

Can’t I just rely on people I’ve already put in charge who know me to make the right decisions for me?

Yes, of course, as long as you have the documentation in place.  Most importantly a health care power of attorney, which names a person (an agent) to make decisions for you in the event you cannot give informed consent for medical treatment.  The health care provider is the person who decides whether a person can give informed consent.

You must rely on others, because dementia is a scenario which will leave many of us very vulnerable and unable to manage things on our own.  There, I’ve said it.  Is that really a fate “worse than death?”  There is an inherent dignity of human beings, regardless of our “cognitive status” or whether we have trouble thinking or remembering.

What do I need to consider to put in this dementia directive?

This is some heavy lifting…. Let me start with a bigger picture.  I enjoyed reading a recent New Yorker article by the late neurologist and writer Oliver Sacks which recounted the activities of two different patients with dementia.  One was a doctor who had been the medical director of a hospital where Sacks had worked.  Despite his mid-stage dementia, the doctor had periods of relative clarity where he believed he was a doctor at the hospital and would write prescriptions.  This was intermittent, however and some of the time the doctor was painfully aware of his predicament and his mounting losses. The article poses the basic question about how to treat someone with AD, do we honor the persons dignity and support them, to the extent feasible and appropriate, in the belief that they can still perform the job that served as the cornerstone of their identity?

This can be a tricky conversation, but of think of a relative who died in a facility from AD.  After she lost most of her ability to speak and communicate with others, she retained a decent command of her fine motor skills.  She had been an expert seamstress and embroiderer and my cousin reported how happy and occupied she was when she was given a knotted up necklace chain to untangle.

Okay, back to the response to the third question.  There is a big difference in a dementia directive between expression of a “freedom to”  in terms of what a person wants provided for them in the type of dementia care, and the right to express preferences which are a “freedom from” a statement of what is not wanted in advance of a time when we may no longer be able to object to such interventions planned or carried out “for our own good.”  How much can we describe and determine in advance and what will actually “stick” in terms of the two competing positive and negative statements?  Well, that’s a topic for my next post!

© 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.

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

 

Dementia and Memory: Out of Time, Out of Mind II

Mount Hope Angel

Mount Hope Angel

This second part of the post focuses a bit more on the qualitative aspect of memory – memory as meaningful life activity, not just a necessity of daily functioning and detail management that holds together moving parts.  I will include the quote from James Hillman I used in my first post:

Why do the dark days of the past lighten up in late recollection?  Is this a subtle hint that the soul is letting go of the weights it has been carrying, preparing to lift off more easily?  Is this a premonition of what religious traditions call heaven, this euphoric tone now coating many of the worst experiences, so that there is little left to forgive?  At the end the unforgiveables will never be forgiven, because in old age they do not need to be forgiven: they simply have been forgotten.  Forgetting, that marvel of the old mind, may actually be the truest form of forgiveness, and a blessing.

Hillman, The Force of Character at 93.  In case you’re wondering about whether I am promoting some Romantic view of memory or denying all the recent advances in neuroscience, I would unequivocally state “no.”  In fact, a favorite of mine in that discipline is Dr. Norman Doidge’s book published in 2007 entitled The Brain That Changes Itself.  Particularly instructive for purposes here is his chapter entitled “Turning Our Ghosts Into Ancestors,” about psychoanalysis as a neuroplastic therapy that helps a sixty-year-old man recover long-buried memories of the death of his mother (when he was a small child) so they could be transformed and improve his relationships and life.

I think part of what Hillman is talking about is that quality of memory, which often gets neglected in our present culture that glorifies the person as a right-bearing agent of our own destiny, valued for capacity, independence and measurable productivity.   This makes me think of Massimo Cacciari’s book The Necessary Angel.  I find intriguing what he says about our space-filling tendencies of this modern obsession  we have with chronological time, especially where he observes that “the greatest idolatry is the cult of the has-been of the irreducible it-was.”   Cacciari at 51.

If this obsession of the factual, objective or “forensic” memory is idol-worship of the “cult of the has-been,” and indeed widely and universally worshipped indeed as “chrono-latry,” then might the recognition that letting go of details that do not serve life review and accumulation of wisdom be an appropriate response to that greed, of releasing the power of the idols?  If we as human beings are more than our personalities accumulating and exchanging our experiences as a form of “currency,” then recognizing this and getting past the worship of the idols of chrono-latry would look like progress!

One very important aspect of the quality of memory for many elders is as a part of life-review, of integration and wisdom acquisition and consolidation.  Another of the qualities of memory is kairos.  It strikes me that our generation’s dependence on smartphones means that many of us need to memorize fewer of the important operational details of our lives.  This is of course liberating, but it is also a trade-off.  No, I won’t go astray here to discuss that issue!  Suffice it to say that the term “memoria” in the Western classical tradition is based on the Latin term for memory.  Memoria was one of the five canons of rhetoric, which grew out of oratory.  The classical orators used no notes, let alone Power Point slides!  I add this point to draw the connection between memoria and kairos – I’ve blogged about it previously.  Kairos being the right time, the opportunity, based on an attunement to the right time to recall memory – memory being identified in the Ad Herennium as “the treasury of things invented.”  So perhaps we might come to more closely examine and question our relatively recent and very narrow definition of what is memory and look at the historical notion of memory in its broader context.  This broader view of time in both qualitative and quantitative aspects will certainly diminish the power of the idols of chronolatry.

Yes, this reminds me of the Steely Dan song, Time Out of Mind – you can listen to it here.  This is life review, traditionally a province of poets to write about the letting go at the end of a life and there is thankfully much wisdom from that quarter.

From stanza IV of Dejection: An Ode, by Samuel Taylor Coleridge:

… we receive but what we give,

And in our life alone does Nature live:

Ours is her wedding garment, ours her shroud!

         And would we aught behold, of higher worth,

Than that inanimate cold world allowed

To the poor loveless ever-anxious crowd,

         Ah! from the soul itself must issue forth

A light, a glory, a fair luminous cloud

                Enveloping the Earth—

And from the soul itself must there be sent

         A sweet and potent voice, of its own birth,

Of all sweet sounds the life and element!

 ©Barbara Cashman  2014   www.DenverElderLaw.org

Longevity, Conflict and Meaning

 

I must be on a roll here thinking about conflict at the end of life.  In light of the recent 911 call from the independent living apartments in Bakersfield and other recent things I’ve read – this issue can use much more discussion.  I even posted a link to my Facebook page    about it.     I liked reading Charles Ornstein’s recent article in the Washington Post entitled “I thought I understood health care.  Then my Mom went into the ICU.”  Read it here.    Ornstein’s poignant and personal account of the difficult decision faced by his family after his mother was in a coma and certain decisions had to made is very instructive.  I hear  frequently from clients and family members who are health professionals  that their training makes these difficult decisions much easier.  I am not always so sure.  Some oncologists, for example, are much more focused on a patient’s quality of life at the end of the course of a long and devastating disease, while others prefer to operate in more of a “superhero” mode, vowing to never give up on a patient’s chances for recovery.  There is no right or wrong here – all of these decisions are difficult, even when we have a pretty good idea about the choice and preferences our loved one has previously expressed.  I think of my own experience with my parents’ deaths.  My father died in March 2010 after a long bout with a combination of an undiagnosed neurodegenerative disease coupled with what was later discovered to be metastatic prostate cancer.  I accompanied him to the doctor on many occasions and was his health care agent for the last nine months of his life.  My mother, his wife of 59 1/2 years, worked for many years as a Registered Nurse  – but this set of considerations and +decisions was a whole different ball game.

It is usually extremely difficult to talk with others about death, and this difficulty is lessened somewhat when the conversation is initiated by an older loved one who wants to make his or her wishes known.  This doesn’t often happen.  There are ways to start the conversation though!  It only becomes more difficult in the face of a life-altering illness.    I have worked with many people with terminal illnesses.  It is not any easier to consider end-of-life issues even if they are more “real” in light of a life-threatening disease.  Because I know how difficult it can be for a doctor to raise the issue of hospice care and associated palliative care or quality of life issues with a patient – the patient may believe that their doctor is “giving up” on them – I will often take the opportunity to discuss these issues when appropriate.  I think the questions are much less threatening when you are discussing them with your lawyer as opposed to your doctor.  These involve, after all, legal questions.  Elder law is such a fascinating mix of and intersection of legal, medical, financial psychological and cultural questions.

I also enjoyed reading “Managing Our Miracles: Dealing with the Realities of Aging” in the latest issue of Bifocal, the publication of the ABA Commission on Law and Aging    In this article, Monsignor Charles Fahey refers to “the third age” – the one that is part of human aging that is beyond human reproduction and physical strength – which has become profoundly extended in recent years.  I have blogged previously about Erik Erikson’s developmental stages   and his wife Joan’s extension of  “The Life Cycle Completed” which included her own chapter entitled “The Ninth Stage.”   I think old age and elderhood need to be examined and re-examined in our culture so that we have a more inclusive definition of what is our human “useful shelf life.”  Many of the clients I see, along with assistance from their family members – do an excellent job of meeting the challenges of increased longevity.  As I remind people, this new age of elderhood is something that affects us in a variety of new and sometimes surprising ways.  This longevity can provide opportunities to live parts of a life that had previously been unlived, or not – depending on each of our own unique circumstances and how we find meaning in our lives.   As Hermann Hesse observed:

There’s no reality except the one contained within us. That’s why so many people live an unreal life. They take images outside them for reality and never allow the world within them to assert itself.

Longevity challenges that, and we generally have no frame of reference for today’s longevity.  We can create this new stage of life within ourselves and share it with our loved ones.    Dementia can be a side effect of longevity for many of us or our family members or loved ones.  We make meaning in our lives and others in our ability to “do” often as some kind of proof of our existence.  Dementia can challenge all those beliefs and ideas about who we are, what it means to “be” simply and no longer able to “do” as we did for ourselves and for others before.  This is part of the new reality of aging and longevity.  More on this topic later. . . .

©Barbara Cashman     www.DenverElderLaw.org