Nuts + Bolts – Advance Directives 101 – Do Not Call 911

This is the first in a series of posts on the nuts + bolts problems we face in health care. As I stated
in my post initiating this effort, my goal is to sidestep the current health care reform maelstrom and discuss specific issues that in themselves
pose a discrete problem to us relative to health care quality, cost,
or outcomes.  Although policy reform is needed to solve any number
of the nuts + bolts problems we face in health care, many of these problems
require only changes in our behavior. From my perspective, if we are
going to even start to move this mountain we are going to have to foster
change from within the system. That change is going to have to come
from all of us as a society and as patients, families, health care providers,
health care organizations, and influential health care managers and
executives.  It’s not just about policy. It’s not about the
government ‘against’ the private sector. It’s about each of us
taking our own personal and social responsibility to do the right thing.

The problem in the current political climate with the health care policy debate is that the real issues all
too often get subverted. The travesty that momentarily turned end of
life issues, quality of life, and palliative care, into ‘death panels’
is Exhibit A. It has been well characterized on The Health Care Blog by
Bob Wachter with references to excellent articles in The New York Times and Joe Klein’s piece in Time.

Like so many issues in health care reform the hysteria that ‘government’ was posed to step in
and dictate our options as to how we would die and what final options
we might have is sadly misplaced.  Reality holds its own sadness
because too few of us get to die the death we would choose and when
we do choose our death it’s the current health care system and our
trusted friends and family who inadvertently subvert our best intentions.

From a nuts + bolts perspective reform is not going to begin to solve this problem.  The facts
are pretty clear:  we spend too many precious health care resources
unnecessarily late in life; we decide far to late what we do and do
not want modern medicine to do for us; and, far too few of us get to
die with the peace and dignity everyone deserves.  The solution
lies not in the health care system, nor does the blame.  The solution
and the blame lies with each of us and until we are willing and able
to rationally decide what we do and do not want modern medicine to do
for us, someone else will be forced to.  Those decisions, all of
them well intended, will inevitably be made under duress.  Death
does not need to, and should not be that way.  Let’s not confuse
this with ‘rights’ or a ‘right to die.’ The concept that we
have a ‘right’ to something just muddies the whole health care debate.
The issue is respect.  How do we respect the dignity of someone
who is facing death with the kindness, gentleness, and support they

Blame is easily passed around. Jane Brody, who does an otherwise excellent job of patient advocacy
in her Jane Brody’s Guide to the Great Beyond blames a fair amount of the problem
on physicians.  Ms. Brody states that while we are all ‘death deniers,’ those of us who are physicians ‘are the worst of the lot’. She goes on the say that, ‘Many people go into medicine because they are so afraid of death.’ I disagree,
but when she goes on to state that there is insufficient training in
medical school to prepare us for the responsibility we will face, I
don’t fault her.

From my front-line emergency room perspective, the problem we face is much simpler and the blame
more universally shared. The problem is that at the time of crisis, the time when life-or-death decisions have to be made by each of us
as a patient, friend, family member, care provider, or physician, our sane, rational individual wishes as a patient are not represented by
anyone in the room. As patients we have abdicated that responsibility to someone else, often someone who has never met us before, and has
no way to know who we are, what we believe, how our faith informs us, or what we want.  In addition, in pain and frustration we may ask
a friend, family member, care provider, or physician to do something that conflicts with what they believe or their faith informs them. Without
our explicit consent its unfair to ask others to take the responsibility for these often painful and heart rending decisions.  In the end

(literally) no one is satisfied with the outcome. The obvious solution seems to
be that each of us should make a rational and informed decision relative
to death before anyone else has to make decisions for us.  It’s
surprisingly simple – how much and what kinds of medical care do
we or do we not want?
The general advice goes something like
this:  1) talk with our doctor and decide what level of medical
care we want given a set of health care scenarios; 2) have a lawyer
draw up a Living Will for us and sign it; 3) fill out a set of advance
directives; 4) identify one or more people we trust as our durable power
of attorney to make medical care decisions for us if we are incapacitated;
and, 5) discuss all the above with our family. All of this should be
done, and a search of Google, Yahoo!, or Microsoft’s Bing for ‘advance
directives’ brings up links to excellent resources that can walk us
through the process.

The nuts + bolts problem, however, lies in whether or not we make those decisions and whether or not other
people, when we are incapacitated, adhere to those decisions. Ezekiel
Emanuel, demonized in the ‘death panel’ hysteria, was the senior author on a very important paper in The New England Journal of Medicine that showed that patients would refuse
‘life-sustaining treatments in 71 percent of their responses to options
in the four scenarios (coma with chance of recovery, 57 percent; persistent
vegetative state, 85 percent; dementia, 79 percent; and dementia with
a terminal illness, 87 percent),’ but that less than 18% of respondents
actually had advance directives. Even more disappointing is that Hardin
and Yusufaly point out in the Archives of Internal
that 65% of decisions by physicians are not consistent
with the patients advance directive.  The sample sizes are small
and the cases are hypothetical, but it is consistent with what we see
in day-to-day medical practice.  Then, Ditto, et. al. point out, also in the Archives
of Internal Medicine
, that advance directives had essentially no
effect on the accuracy of decisions by designated surrogates (for example
those friends or family we designate as our health care Durable Power
of Attorney).

So we have a significant majority of patients who want to limit their medical care if incapacitated but
they never get around to specifying that fact. To add insult to injury,
in the majority of cases even when we do designate our wishes, physicians
and our own designated friends and family potentially ignore them.
On the other hand, the article from Ditto is not completely negative
in that it shows that our chosen surrogates are not completely wrong
in the decisions they make even if they do not know our explicit wishes.
To spin that a little better, they often make the right decision.
It is a situation where families and patients might know better.
In this light, Singer, et. al. in another article in the Archives
over a decade ago, called for us to rethink advance
care planning (ACP). The authors’ Introduction and Conclusions are
telling, particularly in light of the ‘death panel’ hysteria:

Death is often preceded by the use of life-sustaining treatments,
but patients are often incapable of making decisions about treatment
at such times. Therefore, people sometimes use advance care
planning (ACP) to make these decisions ahead of time. Four traditional
academic assumptions about ACP have been advocated in various
sources in the medical literature: (1) the purpose of ACP is
preparing for incapacity; (2) ACP is based on the ethical
principle of autonomy and the exercise of control; (3) the
focus of ACP is completing written advance directive (AD) forms;
and (4) ACP occurs within the context of the physician-patient

The traditional academic assumptions are not
fully supported from the perspective of patients involved in
ACP. The patients we interviewed stated that (1) the purpose
of ACP is not only preparing for incapacity but also preparing
for death; (2) ACP is not based solely on autonomy and the exercise
of control, but also on personal relationships and relieving
burdens placed on others; (3) the focus of ACP is not only on
completing written advance directive forms but also on the social
process; and (4) ACP does not occur solely within the context
of the physician-patient relationship but also within relationships
with close loved ones.

It all boils down to an issue of communication. We should not look at advance directives as the sole
outcome of advance care planning but rather should understand that when
all is said and done what we wish must be well understood, and our friends,
family, and physicians must promise that they will honor our wishes.
Yes we need advance directives, yes we need them in our wallet, on a
necklace or bracelet, and if we’re permanently incapacitated, the
best thing we could possibly do is have the following tattooed on our
chest: Do Not Call 911, Do Not Resuscitate, No Antibiotics, No Feeding
Tube, Please Keep Me Pain Free + At Peace
. Perhaps our insurance
company or fellow taxpayers could reimburse our family for that?

In stark contrast to the hysteria generated around ‘death panels,’ each of us can ultimately
control how we die, other than through trauma, natural disaster, or
violence, no matter what the intent of anyone else or legislation or
the fear of governmental mandates. It’s not an issue of correctly
filling out a questionnaire or just going over a set of pre-canned scenarios.
Life and health care are never that simple.  To reiterate, it’s
about communication.  Only if we chose not to communicate through
advance directives or open discussions do we relinquish those rights.
Yes, talk to your doctor, but far more importantly talk with your friends
and families.

When I sit in the physicians’ workroom in our emergency room I sit with physicians who are liberal,
middle-of-the-road, conservative, democrat, republican, libertarian,
atheist, Catholic, born again Christians, reform and conservative Jews,
Buddhist, Muslim, and every belief, flavor, and shade of color imaginable.
What is critical about us as physicians, however, is that unlike politicians
and religious leaders we are not in the emergency room to hold you to
our beliefs, faith, and politics.  As a profession we treat patients
according to their beliefs and faith.   It is a matter of professional ethics and how we are trained.  If you are a Jehovah’s
Witness and do not want a transfusion on religious grounds we will not
honor that request, we will do everything in our power to help you without
violating that tenant.  In fact, Jehovah’s Witnesses have been
instrumental in changing how we deal with transfusions and when we do
or do not give them no matter what your faith.  They have taught
us things that we and other patients need to forever thank them for.

The same professionalism applies to any decision patients make about how they want to be treated and
about how much care they do or do not want us to provide.  We will do anything to help someone even if it’s to respect their right to
decline intervention.  We all have heartfelt stories but one that I will always remember is a patient who came in with their family unconscious
in respiratory distress and was emergently intubated.  When the patient woke up a short while later, on a ventilator, the patient let
the attending critical care physicians know that they wanted the endotracheal tube removed immediately.  The patient, according to herself and
her family, had fought her disease long and hard and did not, under any circumstances want to be on a ventilator again.  The tube was
removed, the patient was left with her family and she died peacefully.  Medical science could have prolonged her life and she might have gotten
back off the ventilator but she had been where no one else in that room ever had. She was profoundly courageous and I didn’t see a single
physician, nurse, respiratory therapist, or anyone involved who did not have the utmost respect for her and her decision or who did not
have tears in their eyes.

Remember, please, that the physicians
who must work with with each of us, our family, and our friends when
we die are often not our personal physicians or the sub-specialists
who know us and have been treating us. It’s not the pat scenarios
seen on advance directives templates. It’s the messiness of auto
accidents, natural disasters, cancer, stroke, dementia, heart disease,
and the vagaries of life that hit us.  Fill out advance directives,
such as the template provided by groups such as, but then go the next step and talk
about your faith and your core beliefs with someone who shares them
or will respect them and designate that person as the ultimate decision
maker, available 24 hours a day, to make critical life or death decisions
for you. Put that person’s name and contact information, again with
24 hour availability, in your wallet, on a bracelet, necklace, or tattooed
on your chest.  I’m not kidding about the tattoo, particularly
if we fall victim to such severe head injury or insult, dementia, or
incapacitation we would not want to burden anyone else with our care.

And let’s be careful of placing
our moral or ethical judgement on others.  This does not have to
be, unless any one of us so chooses, about a right to die or euthanasia.  This is about how much medical care each of us does or does not want.  For example, antibiotics.  It seems easy, ‘Yes, sure, I would
want antibiotics.  Why not?  That’s an easy decision!’ In reality,
however, it shouldn’t be.  Why shouldn’t we choose, of our
own volition, to die peacefully from a commonly and effectively treated
illness like pneumonia or a urinary tract infection if we are otherwise
incapacitated?  If I am brain injured or demented, bed-bound, and
cannot recognize my family why should I have to have 911 called when
I get a cough and a fever?  On the other hand if I want that care
that also has to be respected as a valid choice.

That is what we all need to
talk about and again, I stress to each and everyone to talk to about
your faith and your core beliefs with someone who shares them or will
respect them and designate that person as the ultimate decision maker,
available 24 hours a day, to make critical life or death decisions for
you.  There are many books and texts that can assist us in those
discussions.  My own personal bias is Sogyal Rinpoche’s The
Tibetan Book of Living and Dying

but there are many others. I am a great fan of film and there is an
entire genre, or rather multiple genres that touch on this subject but
two recent films, both from 2006, come to mind, the director Susanne
Bier’s Danish film Efter brylluppet (After the Wedding)
and the director Sarah Polley’s Canadian film Away from Her.
After the Wedding is ultimately about thinking about someone other
than ourselves and Away from Her about what it’s like to lose
someone to dementia before they die. When you watch Away from
Her remember that Sarah Polley was only 26 years old when she wrote
and directed it, based on Alice Munro’s short story, The Bear Came
Over the Mountain

One of things that gets in the
way of our thinking clearly and rationally about death is the ethical
and moral quandary we face when we place our intellect or own faith
in the way of what should be our respect for each other’s individual
beliefs. We belittle death when we think we can apply our self-righteous
superiority to someone else. The holocaust, so painfully miscast in
the current health care debate, remains the ultimate reminder of the
horrors we have wrought with that self-righteousness. There are many,
many phenomenal films about the holocaust, but when it comes to death
and to the moral and ethical decisions we each must make for ourselves,
the director and actor Tim Blake Nelson’s, The Grey Zone stands
out.  When you are cocksure of yourself, when you know in any situation
what you would do, when you think your moral and ethical judgement are
above reproach, sit down and watch this film.

Respect people, respect their
beliefs, and have the utmost respect for them when it comes to death.
Communicate.  It’s critical and it’s the personal responsibility
of each of us.

Rick Peters is an emergency physician, founder and former CEO of
the EHR vendors Oceania (now Cerner) and iTrust (now Medplexus), and
the PBM PTRX. He has been integrally involved in health care standards
and health care consulting.

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