FHCDA: Listserv messages

Supporting Family Health Care Decisions

www.familydecisions.org

Response to NY Times Article

A 2-part series was published May 29 & 30, 2000:

At Life's End, Many Patients Are Denied Peaceful Passing

Charting a Course of Comfort and Treatment at the End of Life

This series generated a number of responses on the FHCDA listserv:

From: Marsha Hurst [mhurst@slc.edu]
Sent: Tuesday, May 30, 2000 19:52
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: clarification re: today's NY Times article

Is it legally permissible to do what Navah is doing at Beth Israel, i.e.,
accepting the statement of loved ones that if a dying person without
mental capacity "has told his loved ones what his wishes would be, and has
lived life in a certain way so there is no doubt" these oral directives
will suffice in lieu of a proxy or living will?

Thanks.  I want to write to the Times and I just want to be clear on
whether these oral testimonies are accepted in practice or whether they
are accepted by the law.

Marsha

Marsha Hurst, Ph.D.
Director, Health Advocacy Program
Sarah Lawrence College
Bronxville, NY  10708
914-395-2371 (tel)
914-395-2664 (fax)

From: Jack P. Freer [jfreer@acsu.buffalo.edu]
Sent: Tuesday, May 30, 2000 20:23
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

Marsha Hurst wrote:
>
> Is it legally permissible to do what Navah is doing at Beth
> Israel, i.e., accepting the statement of loved ones that if
> a dying person without mental capacity "has told his loved
> ones what his wishes would be, and has lived life in a
> certain way so there is no doubt" these oral directives will
> suffice in lieu of a proxy or living will?

In the article today (2nd of 2 part series), Navah Harlow
describes the process used for patients who are incapacitated
but have no proxy.

It *might* be legally permissible as stated because
case law (as clearly articulated in O'Connor
http://wings.buffalo.edu/bioethics/oconn.html) requires:
        "clear and convincing proof that the patient had
made a firm and settled commitment, while competent, to
decline this type of medical assistance under
circumstances such as these"

So, reports by loved ones that the patient had previously
expressed a desire to refuse this specific treatment,
with full knowledge of the consequences [and it seemed to
all that is was an authentic decision--consistent with
what everyone knew about the patient], then that decision
by that competent patient can be followed now that the
patient is incapacitated.

It sounds like she is doing exactly what many people are
doing across the state: informing families what they must
say in order to meet the legal requirement.

Problem:
This creates misconceptions about the law [among those who
don't understand exactly what is being done], and disrespect
for the law [among those who do].

In reality, she (and the rest of us) are elevating
"substituted judgment" to the status of specific prior
statements. The article says:
"She and others at the hospital have created a system in
which friends and relatives can meet with her and tell
her what they think or know the patient would have wanted.
Then, the case is presented to an ethics panel."

"what they think...the patient would have wanted" sounds
like substituted judgment to me.    Of course, in low risk
situations in which all parties agree, there is little
legal jeopardy, which is why we can get away with it.
I think the article is misleading because it implies that
this is a simple maneuver that is clearly legal.
Jack

From: Connie Zuckerman [Czuckerm@aol.com]
Sent: Tuesday, May 30, 2000 20:25
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

An oral advance directive is completely legal in New York, and each
institution has the legal authority to determine on its own, without court
involvement, whether that oral directive meets the clear and convincing
evidence requirement.  What Navah Harlow is doing at Beth Israel is
perfectly legal, and as one who has participated in it, I can confirm that
it provides a very supportive process for family members whose relatives
clearly stated their desires but never documented those desires prior to
loss of incapacity.  The letters Navah has in her office are truly moving
testaments to the intent of family members to do right by their relatives
and respect prior wishes of their loved ones.

Connie Zuckerman, JD

From: Dena Seiden [DenaEthics@aol.com]
Sent: Tuesday, May 30, 2000 22:30
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

Interesting.  I work at two New York hospitals, and both will only accept
notarized statements, under penalties of perjurty for clear and convincing
evidence of the patient's wishes.  I've been over this with legal ad
nauseum and that is still where it stands.  It's quite awful for family
members, and embarrassing to me as a bioethicist.  I'd be curious how
others aviod the "legal" tangle.  I've suspected for a very long time that
it depends on how a specific attorney is interpreting O'Connor, much like
theologicans debating scripture, but for somewhat different reasons.
    Dena Seiden

From: Stephen Wear [wear@acsu.buffalo.edu]
Sent: Wednesday, May 31, 2000 05:53
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

I do not think the "practice" of requiring notarized statements has
anything to do with how one interprets O'Connor, which I do not remember
as saying anything about such, but everything to do with one's risk
management views, and who one is really serving. Those that put families
though such things want to reduce risk at all costs, including abusing 
families, as well as overtreating patients whose families are unwilling or
unable to supply "adequate documentation".  I know one institiution that
consciously will not even assist a family to generate the notarized
document, as if the average family knows how to do this, and
then shoots them down (as opposed to helping to refine it) when the
document end up short. To my mind, such people (and institutions) are
there to serve  only themselves, not patients.

My own non-lawyer sense is that a well done progress note,
documenting the conversation with the family, is sufficient for any
reasonable risk management, however. I would be curious if any of the
lawyers or risk managers on this thread think otherwise and why. I just
find the practice brutish and an adequate justification for clinicians not
even involving counsel. Which means  the risk manager isn't on the scene
to note and caution against any real risks.

There are certainly fine exceptions, but avoiding the problem
generally seems to mean avoiding legal. Too many of them seem to think 
that managing risk is the supreme value, not something that should be
balanced with other  considerations, such as the feelings of the family, 
or the fact that if we assist the family to identify and articulate what 
the patient might have said, significantly more patients will have in fact 
made sufficiently clear that they did not  want aggressive treatment. In
this regard, over and over, I have seen families answer negatively the
question of whether their loved one ever made any advanced statements, and 
then report them in detail when one starts asking about other family
members who have died, and what they said about them. It is as if many of
the lawyers think it is still safest to treat aggressively, and do not
want to do anything  to support the contrary.

The other way to avoid all this, of course, is to get a proxy from every 
remotely competent person who comes within range of your institution. This 
can be aggressively done, way beyond what JCAHO and the Feds require.

But in the end many folks will not have said anything of the sort and when
it is clear to everyone at the bedside that further aggressive treatment
serves no good purpose, then being crystal clear to the family as to what 
they need  to report their loved one said if that loved one is not going
to be needlessly  tortured is the only ethical thing to do. Right?

Absolutely.

So we all learn disrespect for the law, and real risk management is out
the window.

Wear, Stephen 
SUNY-Buffalo
Center for Clinical Ethics and Humanities

From: Jeffrey Berger [jberger@ms.cc.sunysb.edu]
Sent: Wednesday, May 31, 2000 11:01
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

Different institutions each develop their own threshold of tolerance 
for legal liability risk in terms of adhereing to the "clear and
convincing evidence" standard. Where actual  risk is low (advanced age,
terminal condition, not responding to treatment, etc) but institutions
still demand strict c/c evidence to withdraw interventions, it seems to me 
that there is an "organizational ethics" problem to be addressed.

Any thoughts as to how to address it?

Jeffrey T. Berger, MD, FACP
Director of Clinical Ethics
Department of Medicine
Winthrop University Hospital
Assistant Professor of Medicine
SUNY Stony Brook School of Medicine

From: Susan Regan [SRegan1800@aol.com]
Sent: Wednesday, May 31, 2000 11:02
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

I don't quite understand the value of a notarized statement:  all
the notary can attest to is that the person signing was in fact the person
he or she claims to be. The risk that a hospital should seek to avoid is
the risk that there may be conflicting, credible evidence that the
patient's wishes are different from those claimed, and I don't see how
getting a statement notarized helps avoid that risk.  What does limit 
risk, however, is a good faith effort to openly examine all the evidence -
the kind of process that is best done by an ethics committee.  I wonder
what these hospital counsel could be thinking? I disagree with Steve 
Wear's advice, however, because putting words in family members' mouths is 
not a good faith attempt to discover the wishes of the patient, and that
is not legally or ethically defensible -- unless you really think you know
better than the patient or the family, which I don't.

From: Gayle L. Eagan [geagan@jaeckle.com]
Sent: Wednesday, May 31, 2000 11:03
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

What this discussion emphasizes is that New York needs a Substituted
Judgment law.  What I find most disturbing in the articles are the
instances when patients have written statements or appointed proxies and
the patient's wishes are not being followed.  The second most disturbing
issue is the lack of education in this area in medical and nursing
schools.  Perhaps there should be a mandatory medical education program
instituted to catch up those RN's and MD's who have had no education in
this area.

From: Gretchen Harris [GHarris@slrhc.org]
Sent: Wednesday, May 31, 2000 11:15
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

St. Luke's-Roosevelt Hospital in Manhattan recently adopted a
policy for end of life decision-making that is much like that of Beth
Israel's policy, including a process similar to that described= by
Navah Harlow for obtaining oral advance directives.  The policy  was
written with the input of the Ethics Committee, the Legal Affairs
dept., critical care physicians, and hospital administration, and
every effort was made to be sensitive to the needs of families and
friends of incapacitated patients.  We do not require notarized 
statements, or indeed even written statements, if it appears that an
undue burden would be placed on the family; but in most cases, written
statements are provided, with the help and support of Ethics Committee
members and other members of the treatment team (e.g. social workers,
chaplains, nurses, etc.) I agree that we are at times forced into a
position of "coaching" family members by the ridiculous situation required
by current NY law.

Gretchen Harris
Director, Patient Relations
Program Director, Ethics Committee
St. Luke's-Roosevelt Hospital Center
New York, NY

From: linda glenn [lindaglenn@biomedlaw.com]
Sent: Wednesday, May 31, 2000 11:16
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

----- Original Message ----- 
From: "Gayle L. Eagan" 

> What this discussion emphasizes is that New York needs a Substituted
> Judgment law.  What I find most disturbing in the articles are the 
> instances when patients have written statements or appointed proxies
> and the patient's wishes are not being followed.  The second most
> disturbing issue is the lack of education in this area in medical and
> nursing schools.  Perhaps there should be a mandatory medical education
> program instituted to catch up those RN's and MD's who have had no
> education in this area.
>

ABsolutely!  THis idea is suprisingly a new one, at least to the med 
school and nursing school in Vermont, though I can't say for sure in 
NY.  The response I recieved from the Dean of Medical Education here 
was "I have no idea where we could put such a course -- we have to
have the substantive courses take priority."  I'm trying to rally
the docs and nurses to change this attitude.

From: Elizabeth Clark [EClark@hodgsonruss.com]
Sent: Wednesday, May 31, 2000 14:07
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

Under New York law, so long as evidence of a patient's desires is
clear and convincing (as required under Matter of O'Connor) that
evidence can be written or oral.  Although the O'Connor court
suggested that written evidence was better, it did not impose any
requirement that the evidence be written, so long as it was such as
to be clear and convincing.  The procedure described in the New York 
Times article as followed at Beth Israel sounds perfectly
appropriate as I do not read it to imply some kind of improper
'coaching' of the patient's family to get them to say things that
are not true or reflective of the patient's actual desires.  That,
obviously, would not be appropriate and would not result in evidence 
that was clear and convincing.  

As Steve Wear suggests, however, absent some help from sympathetic
staff, families often do not, by themselves, recall statements made
by the patient or understand the kind of statements that can
constitute clear and convincing evidence.  Therefore, the process
described by Navah Harlow that is followed by Beth Israel should be
seen as a model for other institutions - that too often either make
no attempt to ascertain what family members may know about a
patient's wishes or do not appropriately help them through the
process of remembering.  

Although I do not think that there should be a requirement of a
signed, notarized statement where only oral evidence is available, I 
am aware that some institutions feel more comfortable if they have
such a statement, if only because they assume that a family member
who might lie verbally will not do so if he or she is asked to sign
a document that is essentially sworn testimony.  In the case of an
institution that wishes to have such a document, the family or other 
persons providing the evidence may need assistance in generating the 
document - and, once verbal statements have been obtained that the
institution feels meet the required standard of clear and
convincing, it would be reasonable for them to help the family write 
down the information in an acceptable form before having it signed.  

All of the above presumes that the goal of everyone - family,
institution, caregivers and medical staff - is to enable the
patient's actual wishes to be ascertained and followed, to the
extent possible.  Steve Wear implies that may not always be the case 
- perhaps that is the issue we need to address.  It probably also
emphasizes the need for passage of the substitute judgment statute - 
in addition to addressing the appropriate end of life care for the
person who has no one who recalls prior statements that could
constitute clear and convincing evidence or who truly never made any 
such statements.

From: Demme, Richard [Richard_Demme@URMC.Rochester.edu]
Sent: Wednesday, May 31, 2000 14:10
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

While I believe we need to continue our educational efforts, I think  the
basic problem is this:
When we approach an ethical dilemma with more than one ethically 
justifiable procedure/solution, the next question is"Who gets to decide?" 
Who gets to decide what "clear and convincing" evidence is?  Who is
allowed to make a substituted judgement?  I still think that family
members are usually the most capable and apt to understand the patient's
lifetime narrative and likely desires in most situations. For the most
part, these cases ought not need to go to court unless there is genuine
conflict between appropriate surrogates and/ or physicians.  I think we
need to pass some sort new proxy law, especially allowing family members
to decline invasive nutrition (which is a more accurate term than
"artificial feeding").

Richard A Demme, MD

: Lee A. Albert [laalbert@acsu.buffalo.edu]
Sent: Wednesday, May 31, 2000 16:16
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

    Stephen Wear properly makes the point that excessive or
mechanical methods of risk reduction do not serve dying patients and their
families. Plainly O'Connor, in requiring proof of an incompetent patient's
prior wishes, does not contemplate a formal document of any kind. Just
clear proof that the patient had expressed a prior wish and that the wish
is relevant to the later medical circumstances. Wear is deeply troubled by 
his understanding that New York law does not delegate any decisionmaking
responsibility to family members, absent proof of prior intent on the part
of the patient.  His concern is well founded but his understanding of New
York law is flawed. Regrettably his is a common widespread
misapprehension.

    The NY Court of Appeals has never confronted a case in which the  
patient was in deeply troublesome medical circumstances. The NY Court has
said that family members may not decide to terminate treatment for 
non-dying patients who were in, or seen to be in, relatively comfortable, 
pain-free circumstances. But it has never confronted the issue where the
incompetent patient was in dire medical circumstances, typically a patient
who is likely to die soon, is in substantial pain or discomfort and for
whom there is no reasonable hope of recovery or improvement. There are
obviously large differences between the two kinds of circumstances, 
ethically and legally. Notwithstanding the stark differences, the NY Court  
has never said anything on family decisionmaking in the truly troublesome, 
hard case. The courts in many other states have.

    It has amazed me that over the years since O'Connor, decided in
1988, that the NY High Court has not confronted the issue in the hard 
case. I do not know the reasons, but many of the possibilities do not
inspire confidence in legal advisers, risk managers and the ethicists who
meet with patients and families.  Stephen Wear suggests that families who 
wish life or death extending treatment to be discontinued are advised to
tell tales about the patient's prior expressions. Eventually those tales
will meet the rather demanding standard of proof that O'Connor  demands.
No lawsuit seeking a judicial ruling is necessary and no appreciable risk
is seen to exist. After meeting with the family, the legal or ethical 
adviser safely can recommend discontinuing treatment.

    Stephen Wear, an ethicist who consults with families of
incompetent patients, candidly describes the process:

> But in the end many folks will not have said anything of the 
> sort and when it is clear to everyone at the bedside that further
> aggressive treatment serves no good purpose, then being crystal clear to 
> the family as to what they need to report their loved one said if that 
> loved one is not going to be needlessly tortured is
> the only ethical thing to do. Right?
>        Absolutely.

    I worry generally about lawyers or ethicists who claim to be
absolutely right about difficult decisions for incompetent persons. That
aside, Stephen Wear's method of family decisionmaking guarantees that the
serious gap in New York law will continue unaddressed in the New York
courts.  And patients and the families of patients which decline to be
inventively or creatively dishonest will continue to suffer. Surely there
are better methods. Legally challenging bad  understandings is
one of them. Perhaps that course is not as quick, easy or safe. But
it's better, no?

Lee A. Albert
Internet: laalbert@acsu.buffalo.edu
Univ. At Buffalo Law School
O�Brian Hall, N. Campus
Buffalo, NY 14260

From: Dick Marcus [Tritchard@aol.com]
Sent: Wednesday, May 31, 2000 21:37
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

I concur with all the comments clarifying the
issue before us.  Discerning another's wishes is at
best a risky business - ask any spouse who attempts to buy
the wished for anniversary present.  We necessarily lower the
bar when we seek "clear and convincing evidence" of a patient's
end of life wishes and accept less than a jury might demand in
like circumstances.  Our ethics committees become juries and
need a charge similar to that given by a judge.  That rarely
happens.
It all comes down to a discussion with a family member or best
friend who has no conflict and truly believes a pattern of
statements or discussion  consistent with behavior and life style which 
reveals the patient's wishes.  Ultimately someone has to record the 
"facts" so that the physician's order has a basis.  It may be a cop-out
but over the years I have advised on a case by case basis and it seems
to work.  When two or more impartial people who have had a
reasonably close relationship to the patient concur as to the patient's
wishes, the physician's comfort level in writing the order should be
enhanced. The element of compassion for the patient may at that point
well overcome the fear of "legal consequences".  Clarification through 
legislation seems to be an unattainable dream and litigation is certainly 
not the fondest dream of the ordering physician.  Balancing interests is
all that is left.
Richard C. Marcus - ancient attorney
tritchard@aol.com

From: Dena Seiden [DenaEthics@aol.com]
Sent: Thursday, June 01, 2000 05:47
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

Gracious.  There is so much that invites response in the lastest
posting, most of which commented on my frustration with families being
asked for notarized statements.  First, I hate the use of notarized 
statements, do find it offensive for families and offensive to me.
Second, I totally support a substituted judgment bill, or the now Family
Health Decision Act and have for years.  I was attempting to see how
others were handling the clear and convincing evidence standard adopted by
the Court of Appeals in O'connor.

     Certainly, alot of it is risk management worrying about
liability to the point of obsession.  More, I really think it's lawyers
trying to insert themselves into a process where they are not needed, are
elephatine, where ethics committees naturally excell, and most important,
to give lawyers another reason to be powerful in hospitals and keep their
position and salaries.  This is not true of all hosptial lawyers.  The 
hospital that Nava works in for instance is famous in NYC ethics circles
as having superb legal counsel, who works closely to safeguard patient
interests.

     I think some physicians indeed use legal as an attempt to
continue in the well-worn path of aggressive treatment beyond any
reasonable point. However, I think that is true for a rather small
minority.  What I find is physicians bullied by attorneys with threat like 
"we don't know if the hospital can defend you unless you do it exactly the
way we want". This happens with good physicians, who care deeply about
their patients, but are unsure about law, and can fall to the above
argument.  There is also the fact that administration generally backs the
attorneys, not the physicians and ethicists, even if admin. thinks the
attorneys have gone too far.

    This is a complex problem, one I've not found open to easy
answers.  I've written and had adopted policies on non-beneficial care
wherever I have worked, and they help alot, if everyone has bought into
the policy.   Even then, there can be problems.

     There is another problem, little talked about.  Families
sometimes lie. Through their teeth.  Sometimes one can spot it, and
sometimes it is more difficult.  Perhaps that doesn't matter at all if the
patient is totally irreversible.  But if the patient has some vaguely
reasonable shot (admittedly difficult to define), then it matters alot.
I've found the reasons to be greed, and revenge/hatred, occassionally even
who did mom/dad love best.  Ofcourse, bold liars will perjure themselves
in a notarized statement as well.  I believe careful work by ethicists,
physicians and ethics committees can help with all this.  Statements lifke
"I've always hated her" or "that fuck, he should die" are definite clues.
But I'd be interested again with others experience with this kind of
problem. It doesn't wipe out my support for stopping or not stopping
treatment based on clinical facts and family/lover/friend statements.  And
I don't see enough people signing their advance directives in the near
future.  It just makes me work harder.
     Dena Seiden

From: Jeffrey Berger [jberger@ms.cc.sunysb.edu]
Sent: Thursday, June 01, 2000 09:42
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

Dena,

I agree that end of life care is overly legalized in NYS. What has
developed in some hospitals is an elaborate charade where clear and
convincing evidence is "generated" by families in conjunction with
risk managers  both of whom are caught between doing what is "legal" and
what is ethical.

The CCE standard applies only to life-sustaining interventions, as I
understand it. I am interested to know how are the institutions
represented here differentiate life-sustaining tx from death
prolonging tx. And whether this distinction informs the behavior of
administration/risk management. I have heard life sustaining defined  as
anywhere from two days to one month.

Jeffrey T. Berger, MD, FACP
Director of Clinical Ethics
Department of Medicine
Winthrop University Hospital
Assistant Professor of Medicine
SUNY Stony Brook School of Medicine

From: Pat Lonergan [PLonergan@aol.com]
Sent: Thursday, June 01, 2000 11:41
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

Regarding the numerous e-mails, may I share what What our
institution does in these situations. As chair of hospital's ethics
committee , we developed 6 years ago with assistance of our legal counsel
an "Affidavit of Clear and convincing evidence" in which a family of a now
dying incapacitated patient, gives us statements regarding the specific 
treatment to be discontinued. In our institution , it is usually involves
d/c of ventilator or forgoing of nutrition. Our staff chaplains (I am one)
work with the families one  on one to elicit the documemtation. The
document is then notarized . Always the entire family is in agreement wit
d/c the intervention; obviously we will not use it if there is the
slightest hint of disagreement. Oftentimes the families have to be
"coached" , as to statements, but generally it has been very
successful.

From: JBlackley@KaleidaHealth.Org
Sent: Thursday, June 01, 2000 13:58
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

If I may change the direction of the dialogue for a moment.  Most of 
what I have been reading deals with issues which occur when patients and
their families end up in the ICU's and ER's of our institutions.  While
that drives home the point of necessitating a strategy to deal with the
obvious (or sometimes not so obvious issues) I am curious to know how we
can impact this aspect long before patients hit our doors.  In a perfect
world all physicians would discuss the Health Care Proxy during routine
office  visits. I do not believe this occurs.  What can we do as a
community to inform the public about this issue.  We can debate the laws
and the statutes from now until doomsday but in the meantime what can we
do to create a more proactive environment to assist our patients about the
importance of a Health Care Proxy.  In our collective wisdom do we have
the means, resources and drive to find a way to educate the public in
providing for a health care proxy before they need one?  While legislating
for Family Decision Making Act, could we, should we(as a group)look for a
mechanism to educate and assist people in appointing proxies?

From: Lee Albert [laalbert@acsu.buffalo.edu]
Sent: Thursday, June 01, 2000 14:52
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

    In reply to my submission, Stephen Wear argues that his
understanding of New York Law is the correct one because it is widespread
and commonly held, it finds support in judicial language in majority
opinions (and a dissent) and that it is more �prudent.�  Fair enough.

    But there is no absolutely right interpretation of decisional
law in part because interpretation of law is not a mechanical or purely
logical exercise and law, especially judge made law, is always becoming as
new situations and circumstances are pressed upon the courts.
Interpretation is a highly purposive undertaking; wise responsive law are
among the purposes of interpretation.  We should strongly prefer the
better, more just rule, so that we may secure just such a rule.

    To return to past decisions for the moment, the New York High
Court has passed on discontinuing (or not initiating) life extending
treatment on three occasions.  In rejecting discontinuation claims on two
such occasions, the court in describing the medical circumstances
emphasized that the patient was not in substantial distress, that denying
treatment would create greater distress, and that the patient interacted
favorably with her or his social environment (Storer, O�Connor).  In the
one case in which the patient was in a vegetative stage without hope of
recovery, the court permitted the discontinuation of treatment with
perfunctory elaboration of the patient�s wishes (Eichner).  That pattern 
alone speaks louder than isolated passages from opinions and highlights
that the New York High Court has not ruled in a case of genuine hardship
and pain.

    What would influence the court in such a case?  That a rule
allowing for family input would alleviate serious hardship and distress,
that a contrary rule would inflict inhumane pain, that most other states
delegate authority to families in such circumstances and that
legislative intervention is or is not likely are among the important  
factors relevant to a decision.

    Circumscribing risk is another purpose of interpreting decisional law,
what Stephen Wear refers to as a ��prudent� reading at the institutional
level.� Invocations of risk management and prudence leave me perplexed and
unpersuaded.  I fail to see how institutional prudence, or personal
prudence, is served by an ethicist or committee encouraging families to
fabricate in order to discontinue treatment.  That is, in my view, far
riskier than my �way out� interpretation of New York law.  It is just less
ethical and legal.

    The truth is legal risk depends on a likelihood of legal proceedings.
For all the talk about provider and hospital fears of the omnipresent law,
the likelihood of legal interventions in continuation or discontinuation
of treatment situations is close to the vanishing point. I base this dogma
on the judicial experience in New York and elsewhere with cases 
challenging these decisions.  I personally believe that the asserted
preoccupation with legal risk masks a host of other concerns. But that is
a tale for another day.

Lee A. Albert
Internet:  laalbert@acsu.buffalo.edu
Univ. at Buffalo Law School
O'Brian Hall, N. Campus
Buffalo, N.Y.  14260

From: Jay E Kantor [jk19@is2.nyu.edu]
Sent: Thursday, June 01, 2000 15:10
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

I too have a problem with suggesting that the law be bent a bit.
Isn't that what was done before DNR legislation? At that time, slow codes
were done with the best intention, and with the sure and absolute belief
that the patient was better off with no (real) resuscitation attempt.
Granted. that was usually done without family input. But is encouraging
such complicity of the family, and, perhaps coaching and convincing them
to forego treatment, really the ethical thing to do?  It seems to me that
an outright and open breaking of the law (permissable in some 
circumstances by medical society codes of ethics) can at least draw
attention to a law that might be unjust. But this kind of bending may move
us back, not to recognition of patient autonomy, nor to move us along to a
change in the law,but to a sort of paternalism, particularly when the 
family is coached to do what the treatment team thinks is best. I am also
not sure that every ethics committee is composed of members that
are really educated in all the issues at stake. In those cases, the 
committee may be better described as the "Humane Treatment" committee.

Jay E. Kantor, PhD

From: Casey Frank [letters@caseyfrank.com]
Sent: Thursday, June 01, 2000 13:59
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: rights to die for

It might be efficacious to recall a few names: Sheila Pouliot, Eliot
Spitzer, Timothy Quill.

Several local solutions to the current dilemma were shared. They are
apropos, they are ethical, and they are sort-of legal. What they are 
not is a solution to the Sheila Pouliot-type cases, which rage when there
is conflict. What they cannot not do is prevent Attorney General Eliot
Spitzer from intervening, as he did after a staff member at Pouliot�s
developmental home contacted his office.

Which brings us to Dr. Quill. He courageously brought the issues out of
the closet, and away from the covert traditions that had developed around
dying. Is not the Family Health Care Decisions Act the outcome of that
initiative? I can't criticize the local solutions, though the good may
keep away the better. We must prevent that as best we can. 
Cordially,

Casey Frank JD
(alum of SUNYAB)
Attorney & Counselor
1357 Williams Street, No. 307
Denver, Colorado 80218
303-333-8001
Fax 333-8499
888-693-1121
letters@caseyfrank.com
www.caseyfrank.com

From: Susan Regan 
Date:  Thu, 1 Jun 2000 19:06 EDT
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

Dr. Berger raises an interesting point which often is helpful in 
determining when a treatment is no longer indicated, regardless of issues
of consent. When a disease or condition has reached the point when no
further treatment can be expected to either arrest or reverse the disease
process, and when the patient is unstable and death imminent, we would
describe that patient as a person in the process of dying.  As such,
continuation of certain treatments is very likely no longer indicated - we
do not expect or require doctors to do things to patients that have no
reasonably anticipated benefit. The troubling question raised by the
Storar case is that the patient's life could be sustained for a period of
time measured in months, and there was testimony that the patient was
stable, not in excessive pain, and the blood transfusions keeping him
alive were bothersome but not painful. This was not a dying patient,
though he did suffer from a disease that ultimately would become terminal.
Most of the cases that come to ethics committees fall in the "grey area"
not decided by Storar, where the patient surely is suffering, often more 
than did John Storar, but where it is not possible to predict the course
in the near future.  For patients where the course is predictably
death in hours or days regardless of what treatments are tried, we would
advise that nothing in the law requires that the doctors or hospital  
inflict additional pain or suffering by actively treating.

From: Susan Regan 
Date:  Thu, 1 Jun 2000 19:42 EDT  
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

I feel moved to respond, if only to defend against what I take to be a 
misunderstanding of advice I have given to Hospital clients and others.
Dr. Wear, not being a lawyer, misapprehends the difference between the 
holding of  a case and the dicta. O'Connor has caused a great deal of 
trouble in NYS, not  only because of its holding - which is limited to
patients in the  circumstances of Mrs. O'Connor - but because the court
expressed in dicta an  attitude that suggested it might, if given a 
different case (the "hard case" Lee Albert describes), decide in a way 
that conflicts with widely held  ethical standards.   But, as Lee very
correctly says, that case has not been  decided in NY. Until it has been
decided, the case of John Storar is more helpful in deciding treatment
issues where very sick incapacitated patients  are involved. Although his
Mother felt that the transfusions he was receiving were causing him to
suffer, there was conflicting testimony, which the court found credible, 
that he was generally quite contented, that he was enjoying a  quality of
life much the same as had been his life before the transfusions, 
and that they did not cause him excessive pain.  The court explicitly
stated that if these were not the facts, it may have decided differently,
and it explicitly said that hospitals are not required to seek the
judgment of a court in such cases. Hospitals and doctors are thus left to
make difficult decisions where, lacking consent, the only guidance is
standard of care. When such decisions will end in death, it is not
surprising that we would prefer to have clear consent on the part of the
patient or the proxy, or clear and convincing evidence of the wishes of
the patient. Issues of consent cut through all cases.  But where consent
is unavailable, neither Storar nor O'Connor (nor any other care I am aware
of) requires that patients be given all available treatment, no matter 
what the burden.  We do still have common law principles which make it
important to ask basic questions like: What is the potential benefit of
the proposed treatment?  What are the expected burdens?  Are there risks
involved in the treatment (for some patients, the risk of aspiration with
a feeding tube is significant; for some patients dialysis can cause
dangerous cardiac instability-although these are often thought of as 
life sustaining treatments, this is not always the case) And: What is the 
accepted standard of care in the community for treatment of the patient in 
the situation he is in?  It is true that the Family Decisionmaking Bill, 
which I support, would ease the problems surrounding consent in an
important way, if only to get us out from under the legal debates.  But it
would not eliminate the need for the careful consideration of these 
decisions, and I am afraid we would still have to consider risk, because
critical care decisionmaking will never be, nor should it be, easy.

From: Dena Seiden [DenaEthics@aol.com]
Sent:    Thu, 1 Jun 2000 22:56:30 -0400
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

     I haven't noted any serious differentiation on the part of legal
between life-sustaining and death-prolonging tx.  Au contraire.  I've been
involved in cases where physicians clearly stated that death is imminent,
in the sense of say, one to two weeks, and legal say that the "evidence"
isn't specific enough? When did the patient say what? How often? Where did
the conversation take place?  

     I think risk managers are caught in the middle, dictated to by legal 
counsel and cursed at by frustrated physicians, who are still too 
disorganized to say fuck off as a group.  But your question is really too 
complex for e-mail, or at least for the kind of e-mailing I do.  Call me
at either 718-334-3279 or 212-459-8613.   If I'm not there, there's voice
mail so leave a couple of times when you are available.  I have 
Epstein-Barr and mono, so I'm trying to keep my work days a bit short.
     Dena Seiden.

From: Jeffrey Berger [jberger@ms.cc.sunysb.edu]
Sent: Friday, June 02, 2000 10:32
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

FYI

There is an interesting discussion of the O Connor case by George Annas in
his book "Standard of Care" Oxford 1993.

Jeffrey T. Berger, MD, FACP
Director of Clinical Ethics
Department of Medicine
Winthrop University Hospital
Assistant Professor of Medicine
SUNY Stony Brook School of Medicine

From: ohlenberg [ohlenberg@prodigy.net]
Sent: Friday, June 02, 2000 11:30
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

I would like to emphasize the importance of P>Lonergans response.As
a former ethics committee chairperson,we did use written evidence of the
patients wishes as presented by the family in end of life
decisions.However,only if it was clear that the family were completely in
agreement-any hint of disagreement between family members would leave a
devastating legacy.  Elisabeth Ohlenberg RN,EdD

From: Janet Kaye [KAYEJA@BUFFALOSTATE.EDU]
Sent: Fri, 2 Jun 2000 15:40:50 -0400
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

And so often the family members are in disagreement. Under such cir-
cumstances, it's often difficult, even with a theoretically-legally
binding document signed by the once-competent patient, to see that the
patient's wishes regarding termination of life-support be met. I've been
writing about these issues as a lawyer/journalist since the early 1980's
-- then wrote about them as a daughter for Los Angeles Times Magazine when
the "story" was my father and our family. That was in July of 1991 -- 
but, as we all know, it could also be -- and has also been -- 2000.
It's amazing how unclear clearly documented wishes can be for family 
members who wish not to implement them. Those of us who advise
readers, clients and patients to think through the issues and sign the
necessary legal papers also need to remember to urge them to clearly 
communicate the intent behind the documents not just to their doctors and
designated decision-makers, but to all family members. Of course that's
not a complete answer either.....

Janet Kaye

Subject: Re: Oral Advance Directives in New York State
Date: Sun, 4 Jun 2000 13:08:49 -0400
From: Rabbi Lowell Kronick 
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU

As Chair of our institution's Bioethics Committee, I have followed this
thread about the NY Times articles with great interest. Frankly, however,
I am surprised that no one on this listserv, to my knowledge, has yet
referenced a 1993 opinion by the NYS Court of Appeals that appears to
address squarely the permissibility of providers' accepting oral evidence
of incapacitated patients' prior declared choices with respect to
treatment decisions.

I refer to the "Elbaum II" case (COURT OF APPEALS OF NEW YORK, Grace Plaza
of Great Neck, Inc., Respondent,  v. Murray Elbaum, Appellant. No. 162.
623 N.E.2d 513, 82 N.Y.2d 10. Date Decided: October 14, 1993.) As many on
this list will know, the case refers to a nursing home patient, diagnosed
as being in a persistent vegetative state, whose husband wrote to the
facility that it was his wife's wish that she be allowed to die naturally
should she fall into an "irreversible vegetative state", and he instructed
the nursing home to remove the patient's feeding tube. The nursing home,
not accepting this proffer of oral evidence of the patient's prior
capacitated wishes, billed the husband for care that he maintained his
wife did not want. There were claims and counterclaims filed in NY courts
by the husband and the nursing home with respect to liability for the
costs of care. Those wishing to know more details about these competing
lawsuits can read this and prior relevant court decisions.

In this 1993 ruling, Judge Simons, writing for the Court of Appeals,
stated, "We would but add that in many, perhaps most cases, providers will
appropriately consider the family's evidence on the matter conclusive and
honor requests to terminate treatment of a hopelessly ill patient. By
doing so they not only avoid continued anguish for the family but also
avoid imposing on all parties the expense and delay that accompanies legal
proceedings to resolve the question. However, judicial resolution of the
question may be required if the family members are divided or uncertain in
their understanding of the patient's wishes, if the provider entertains
doubts about the state of the law or if it has legitimate professional
reservations about the procedure requested. In such cases it may seek a
judicial determination of the matter itself or insist that the family do
so.

"If the provider refuses to act, we find nothing unfair in placing the
burden of instituting legal proceedings on those seeking to discontinue
treatment. Though the provider has a legal duty to adhere to the known
wishes of a patient, a desire to terminate life support does not stand on
the same legal footing as a patient's request for a routine change in 
treatment. O'Connor instructs decision-makers to "err on the side of life" 
and makes clear that the burden of establishing an incompetent patient's
desire to die rests squarely with those who are asserting that desire.
That burden does not shift simply because a family member has requested
termination of life support. If the provider and the family disagree, the
family may seek another facility for the patient or it may be able to take
the patient into a family member's home. But if no other recourse is
available, it is the family which ultimately is obliged to seek a legal
determination establishing the patient's wishes. As intimates of the
patient, the family members have access to the necessary evidence and are
in the best position to submit it to a court for consideration."

My facility, with the concurrence of counsel, utilizes this guidance of
the state's highest court as a legal basis for having the option of
accepting "oral advance directives" provided by the family, if there is
consensus of all stakeholders. We regard this opinion as the Court's
further explicit clarification and expansion of its prior holding in
O'Connor (1988) that clear and convincing evidence (CCE) to terminate
life-sustaining treat is required, but that written advance directives are
not the only documentation sufficient to establish the CCE standard. Thus,
our policy permits us to accept oral evidence if our Ethics Consultation
Service or Bioethics Committee determines that the family's information
reaches the level of CCE. Our policy also lists criteria for making such a
determination.

However individuals may feel about the appropriateness of a CCE standard,
or, indeed, any legalistic basis for making these very difficult, often
wrenching, decisions, our institutional policy is predicated on respect
for, not necessarily agreement with, existing NYS law. It is our practice,
in ethics consultation, to interview family members thoroughly, and to ask
probing, clarifying questions about the incapacitated patient's prior
statements, choices, and attitudes in the absence of living wills and
health-care proxies. In all instances, we are mindful of and sensitive to
the impact on the patient and the family of decisions to continue,
withhold, or withdraw life-extending treatment. We do not feel it
ethically or legally appropriate, however, to "coach" the family in an
attempt to contrive nonexistent evidence or to help them construct a 
substituted judgment or best interests assessment and represent those as
CCE. In short, we do not behave as if the Family Health Care Decisions
Bill has already been passed by the Legislature. If and when it does, I 
expect that our policy will change to reflect evolving law and ethics.

----------------------------------------------------------------------------
Rabbi Lowell S. Kronick
Director of Pastoral Services
Chair, Bioethics Committee
Chair, Human Subjects Review Committee (IRB)
Parker Jewish Institute for Health Care and Rehabilitation
271-11 76th Avenue
New Hyde Park, NY 11040
Voice: 718-289-2279
Fax: 718-289-2323
E-mail: Home: rlsk2@compuserve.com or rlsk@aol.com
            (rlsk2 is RLSK2 in lowercase letters)
           Office: lkronick@parkerinstitute.org

From: Stephen Wear [wear@acsu.buffalo.edu]
Sent: Monday, June 05, 2000 04:59
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: clarification re: today's NY Times article

I have found myself re-reading the various email threads over the past
week, in large part trying to identify what the �bouncing ball� really is
in all this, and what more, if anything else needs be said, or addressed.
I have felt personally edified by a number of the comments, especially by
Sue Regan and Lee Albert, as to what was really said, or not said, in the 
O�Connor et al. cases, and where they think that leaves us. Can�t report
that I agree with it all, but the rest of you hardly need to have your
email boxes filled with attempts to make me see the light.

It may perhaps produce a resounding groan from you all, but I do think we
still have some important issues before us, issues we should get clearer
about as interested parties of the �family decisions� bill, and as people
who, one way or another, �care� for and about the sick and dying.

I will presume to suggest that we need to get clearer about two basic
issues: (1) given the O�Connor et al. cases and the overall response to
them, what actually is the legal and ethical situation in NYS at present?;
clarity on this issue would go to the enterprise of advocating for the 
�family decisions� bill, in effect what is broke and needs fixing, as well 
as lead to the second basic issue (2) what do we do at the bedside in the
interim prior to the bill getting passed, or in the long run if it is 
not?. This second question relates both to the issue of what one might say 
to one�s higher institutional authorities to perhaps lessen some of the
problems when the obsessive risk management mentality tends to raise the 
bar beyond anything contemplated, or required, by O�Connor at al. It also 
relates to the troublesome issue of �coaching� families as to what they
need to say, that some have raised. I will attempt to answer these 
questions below, quickly, and mainly to get input and correction on them 
from the rest of you; at best I feel I am looking through a dark glass
here.

  n              : Wear;Stephen
  tel;fax        : 716-862-4748
  tel;home       : 716-667-2728
  org            : Center for Clinical Ethics and Humanities
  adr            : ;;7707 Milestrip Road;Orchard Park;N.Y.;14127;USA
  email;internet : wear@acsu.buffalo.edu

From: LStein5325@aol.com
Sent: Tuesday, June 06, 2000 08:14
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: Oral Advance Directives in New York State

I have read most, but not all, of the comments re the NY Times article, so
it's possible that someone else may have made the following point.

The NY State Rules & Regulations for medical facilities includes the
following statement (Title 10: Health, Section 400.21, 10.054, 1/1/95,
Reissued 7/95), re oral advance directives:

"In the absence of a health care proxy, adults who express their wishes
orally or in writing concerning life-sustaining treatment in a clear and
convincing manner are entitled, based on decisions of both the United
States Supreme Court and the New York State Court of Appeals, to have
those wishes recognized.  Facilities must ensure that all adult
patients/residents are informed of their rights and are supported and
protected as they exercise their rights to formulate written or oral
instructions regarding their health care in the event such adults become
incapacitated and are unable to direct their own health care."

Doesn't this mean that oral advance directives, as long as they meet the
CCE standard, have legal status?

Lois S. Steinberg, Ph.D.
e-mail: Lstein5325@aol.com

From: Lee Albert [laalbert@acsu.buffalo.edu]
Sent: Tuesday, June 06, 2000 11:19
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU
Subject: Re: Oral Advance Directives in New York State

The answer is clearly yes, prior wishes are to be respected. But  advisers
and providers sometime think they know better and therefore ignore the
law. Families sometime join in this enterprise. As a commentator put it,
many people do not love the law. They often do not follow it either.

Lee A. Albert
University at Buffalo Law School
Voice: (716)6452869 Fax: (716)6452064
Internet: laalbert@acsu.buffalo.edu

On Tue, 6 Jun 2000 LStein5325@aol.com wrote:

> Doesn't this mean that oral advance directives, as long as they meet
> the CCE  standard, have legal status?
>


Subject: Re: Oral Advance Directives in New York State
Date: Wed, 7 Jun 2000 06:13:00 -0400
From: Susan Regan 
To: FHCDA-LIST@LISTSERV.ACSU.BUFFALO.EDU

Yes, I believe that is exactly what it means.
Sue Regan

For more information, E-mail Family Decision Coalition
For questions about website, E-mail Jack Freer