9/28/06njm

**Palliative Medicine\'s Role in the Continuity of Care**

The following is the captured discussion based on two clinical scenarios

Questions

1.) How would this patient be managed at your facility?

2.) What other resources do you wish you could offer her?

Let us know your thoughts

**Case #1**

36 yo female presents with pain in both legs.

The patient describes the pain as throbbing, shooting and burning in
nature. She describes paresthesias as well. She has bilateral LE pain
from thighs to feet - worse on left leg. She also notes some swelling of
bilateral lower legs and feet in the evening.

Pain and trauma history:

1991 - Fell out off a fire escape ladder - fracture. left ankle.

In 2001 she suffered a fractured jaw in a domestic violence incident.
She has suffered headaches since that time.

In 2003 she was thrown off a bridge in another DV incident and suffered
a neck fracture. A bone graft was taken from her left hip for a C4-7
fusion.  She had no permanent spinal cord damage. She has had neck pain
and recurrent HA since that time.

On November 18, 2005 she had an MVA and suffered bilateral femur
fractures.  There was some discussion of amputation of the left leg -
ultimately both femurs were treated with ORIF fixation. Her left leg was
ultimately saved.

She underwent some initial rehab at a local community hospital. She has
scheduled follow up with physical therapy but misses many appointments.

Past Medical History

Pt. relates a long history of ETOH abuse, though at present is not
drinking. She also has problems with family relationships - primarily
with her mother and sister.

Social history

The patient last felt well in 2000. At that time she was a laborer in
heavy construction.

Medications

Tramadol -does not use as she is not sure what it is for.

Omeprazole - does not use

MVI - takes daily

Ibuprofen - uses prn1-2 does /d. does not feel it is very helpful

Gabapentin - takes 1,200 mg tid - feels it is helpful

FeSO4 - one daily

B12 - has missed appointments for doses

CaCO3 - one daily

T#3 - takes prn only - 2-3 doses/d

Paroxetine - takes 20 mg in AM - causes drowsiness

Sennocot - rarely uses

Let us know your thoughts

Thanks

Neil

**Background article:**

[Nielson
WR](http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term="Nielson+WR"%5BAuthor%5D).
The concept of pain. [Clin J
Pain.](javascript:AL_get(this, 'jour', 'Clin J Pain.');) 2001 Dec;17(4
Suppl):S5-7.

<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=11783832>

Full text available here

<http://hsrl.nihlibrary.nih.gov/>

**Palliative Care Concepts, online**

<http://www.ihs.gov/MedicalPrograms/MCH/F/documents/PalliaQue82406.doc>

**Discussion:**

**Gutierrez, Lonna (PIMC) \[Lonna.Gutierrez@ihs.gov\]**

**Fri 9/1/2006 4:02 PM**

 

You have presented a pain case at a time when I can respond! I will tell
you how I do it here at PIMC..,

 

This patient needs evaluation of the ETOH abuse vs alcoholism and/or
drug abuse. Suicidal and depression evaluations are also appropriate. In
either case, she needs treatment. She also needs a mental health
evaluation. A lot of patients with this history have occult mental
disorders that have never been addressed. Pt also needs LFTs, Hep A,B,C,
evaluation and UDS. I would assess for current DV.

 

The patient clearly has symptoms of neuropathic pain. Therefore, I would
try nerve membrane stabilizing agents (anticonvulsants). Elavil and
Gabapentin are first line but Topirmate or Zonegran are better choices
as both relieve cravings for ETOH. Zonegran can relieve cravings for
opioids. Overall, the expense involved is always better than alcoholism
or addiction. Lyrica is the new kid on the block and it is likely to
work but it is not known to reduce cravings. I would NOT use opioids on
this patient\-- simply too high risk.

 

I would look to document the cause of the pain; does she have DM? PDN?
HX carbon monoxide poisoning? Lyme DZ? Etc? Usually, in these cases, I
do not find any of the above. What I often DO find is a history of
inappropriately treated nociceptive pain, at the time of the injuries,
which, as we know, will lead to changes in the central nervous system,
after six months, that usually cannot be reversed.

 

I also work to engage the patient in treatment. I use a pain diary,
behavioral assignments, exercise assignments, physical therapy and a
pain agreement. If the patient does not engage in treatment, your
chances of success go waaayyyy down. We have a saying in pain and
addiction; \"If you are working harder than the patient, it is time to
quit\". Most patients who really have severe pain will begin to keep
appointments and engage once you set limits and once they realize that
treatment works.

 

Paresthesias can be nicely treated with Lidocaine patches. Sometimes
Capsician works. Baclofen, a central muscle relaxant, also is a great,
adjuvant, neuropathic, pain drug that reduces cravings for ETOH.

 

I would treat the edema with Aldactone 25- 50mg as edema nearly always
ramps up neuropathic pain. When using multiple adjuvants, in this
fashion, patients often get a synergistic result and end up using lower
doses of all meds, with fewer side effects and better outcomes.

 

There are no right or wrong or cook-book approaches in my experience.
Working with these patients requires **both** the art **and** the
science of medicine. It is some of the most challenging work we do.

 

Lastly, the most important resources that are absolutely needed to
evaluate and treat such cases are TIME and a respectful, kind, positive,
attitude toward the patient. If the provider does not have the time or
does not take the time, there will be no good outcome. ALL IHS
facilities need to recognize this truth and plan longer appointment
times for pain evaluations. When it comes to attitude/approach, in 1960,
Margo McCaffery said that the best definition of pain is, \"whatever the
patients says it is whenever the patient says it\". In my experience
this is the best clinical definition of pain. Pain is a subjective
symptom and the provider simply must take the patient\'s word for it. My
addiction colleagues add the caveat, \"Unless proven otherwise\". This
too is good advice. When the provider starts out with the right
resources and the right attitude, these patients can be successfully and
safely treated.

I hope this has been helpful.

Lonna Gutierrez, FNP, Pain & Addiction Specialist, Phoenix Indian
Medical Center

**Judith Kitzes \[jkitzes@salud.unm.edu\]**

**Sat 9/2/2006 12:26 PM**

Great case and discussions.

Thanks for your commitment to palliative care and pain management. This
field takes as much knowledge and skills as diabetes mellitus management
and congestive heart failure. Soon it will be a board recognized
subspecialty. (Exams 2007) with fellowships.

Bye Judy

Judith A. Kitzes, MD MPH

UNM Palliative Care Office

p: 505 272-4868

**Soraya Aragundi \[soraya.aragundi@arcticslope.org\]**

**Tue 9/5/2006 7:00 PM**

Acupuncture may be a great tool to help this patients deal with their
pain and the depression that usually is associated with chronic pain.\
\
Soraya Aragundi, MD

**Placide, Frances fpp (IHS/NAS) \[Frances.Placide@ihs.gov\]**

**Wed 9/6/2006 2:11 AM**

Dear Lonna et.al.

Excellent case!

Lonna, I applaud your comments and have nothing new to add.

I echo your recommendation for mental health assessment/treatment and
longer visit times for patients living with chronic pain.

Alternative medicine including acupuncture may also be helpful in this
case, if available. Let\'s also not forget patient education on disease
process and non-pharmacological self management.

I am fully supportive of these patients receiving comprehensive exams
from the outset. To simply keep providing ineffective or addictive
medications to them without comprehensive treatment continually
increases their risk of significant aberrant behaviors as well as
co-morbid diseases i.e. GI disorders, endocrine disorders and CV
disease. Their treatment is often complex and involved. If longer visits
are not possible then multiple short visits may be the next best option.

In my opinion, visits for pain management should be separate from other
chronic disease management, when appropriate, although uncontrolled
chronic pain can contribute to exacerbation of other chronic diseases.

Thanks!

Frances

Physician Assistant Chief Clinical Consultant

828-497-9163 ext 6499 (W)

**Case #2**

Here is our second case in the Palliative Care Discussion Forum

A 79 yo male with COPD and CHF is in the ICU with acute pneumonia. His
O2 saturation is dropping, with CO2 rising on high flow oxygen. He is
hypotensive on vasopressors.  It appears he will need to be placed on a
ventilator to maintain oxygenation.

His baseline condition: O2 dependant at home with poor exercise
tolerance - bed to chair existence.

-   hospitalized two months ago with pneumonia.

-   this is his third hospitalization in the past 6 months.

 

The staff requests a family meeting to discuss "code status". At present
his code status is "full code".   

Questions:

1.  What does "code status" mean at your Service Unit?

```{=html}
<!-- -->
```
1.  What difficulties do you have "obtaining code status"?

2.  What issues should be raised and clarified in end-of-life
    discussions with patients and families?

3.  When should EOL discussions be started?

Please let us know your thoughts on the questions above, or on other
aspects of management

**Domer, Tim (FDIH) \[Tim.Domer@ihs.gov\]**

**Tue 9/19/2006 3:24 PM**

Perhaps readers of this forum who work in palliative care, or who have a
special interest in end-of-life care, or who are concerned that we do
not provide adequate EOL care, could add their comments to this
discussion.

We put a tremendous amount of time, energy and resources into perinatal,
child, young adult and adult care. We also put a great deal of energy
and resources into "prevention". A wealth of studies has proven that
what has not received the needed attention and resources is effective
care provided to those people in the last part of their life cycle/life
span.

The only sure thing in life is that no one gets out of it alive. People
say "death and taxes" yet many people pay no taxes. All the prevention
and primary, secondary and tertiary care in the world does not change
the fact that each individual will die. What we do have some ability to
change and help control is HOW our patients die.

Do they die with unnecessary pain or other symptoms?

Were they able to find closure in relationships and loved ones?

Were they able to plan for their passing and for those that they will
leave behind?

Is the IHS better at providing EOL care for our beneficiaries than the
rest of the US?

Is there a need for formal training in EOL care?

A few new questions?

1.  Should DNR patients be admitted to ICUs?

```{=html}
<!-- -->
```
1.  What kind of EOL care do IHS patients receive?

2.  What is a "good death" from the providers' perspective?

3.  What is a "good death" from our patients' perspective?

**Domer, Tim (FDIH) \[Tim.Domer@ihs.gov\]**

**Thu 9/21/2006 4:28 AM**

Here are a few links to palliative care articles - including an article
in the current issue of JAMA. The November 2000 JAMA supplement was
entirely devoted to educating physicians in providing effective EOL
care.

California now has a one-time requirement for all physicians - with the
exception of pathologists and radiologists - to complete at least 12.5
hours of formal palliative care and pain management training, in order
to keep their medical license. In all likelihood, other States will
follow - or already have similar requirements.

<http://jama.ama-assn.org/cgi/content/full/296/11/1385>

<http://jama.ama-assn.org/content/vol284/issue19/index.dtl>

<http://jama.ama-assn.org/cgi/content/full/284/19/2476?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=end-of-life+care&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT>

<http://jama.ama-assn.org/cgi/content/full/284/23/3051?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=end-of-life+care&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT>

<http://proquest.umi.com/pqdweb?index=11&did=9776924&SrchMode=1&sid=1&Fmt=3&VInst=PROD&VType=PQD&RQT=309&VName=PQD&TS=1158767964&clientId=53612#fulltext>

**Toedt, Michael \[Michael.Toedt@ihs.gov\]**

**Thu 9/21/2006 5:38 AM**

Another excellent resource by West Virginia University:

 

<http://www.hsc.wvu.edu/chel/wvi/>

**Figueroa, Liza (PIMC) \[Liza.Figueroa@ihs.gov\]**

**Thu 9/21/2006 7:27 AM**

Great site.

Thanks

PAOIHS Rehab Consultant

 Phoenix Indian Medical Center

Physical Therapy Department

\(602\) 263-1561 office

**Domer, Tim (FDIH) \[Tim.Domer@ihs.gov\]**

**Thu 9/21/2006 9:50 AM**

Three more I have found quite useful.

<http://www.palliativedrugs.com/>

<http://www.growthhouse.org/>

<http://www.stoppain.org/>

**Gutierrez, Lonna (PIMC) \[Lonna.Gutierrez@ihs.gov\]**

**Thu 9/21/2006 3:31 PM**

I created a pain resource website, for our providers at PIMC, that could
be expanded to IHS, that has PIMC, state, national, and federal
medical-legal guidelines, resources of all kinds, drug info, and
specific sites for difficult to treat pain with standards for practice.
Click on the PIMC home page, below. Then click on Medical Library, on
the left of the page, and then click on PAIN RESOURCES. We here at PIMC
hope to add this tool to the electronic medical record tools so they are
one click away from every provider, on every patient, all the time.

I would like for everyone to visit the site and give me feedback. I am
still working on it. What do you all think about it? About expanding it
to national IHS use?

[http://home.pimc.ihs.gov](http://home.pimc.ihs.gov/)

**Domer, Tim (FDIH) \[Tim.Domer@ihs.gov\]**

**Fri 9/22/2006 10:14 AM**

Lonna,

I think this is an excellent resource. Thanks for sending the link.

One way to have this -- or similar information available to all of IHS
-- might be to add Pain and Symptom Management as a site on the IHS web
page, under "Medical and Professional Programs.

Bruce Finke has done a very nice job with the Elder Initiative site that
has a Palliative Care subsection. We should probably add a site for Pain
and Symptom Management/Palliative Care under its own heading -- outside
of the Elder Care Initiative.

<http://www.ihs.gov/MedicalPrograms/ElderCare/Palliative_Care.asp>

Tim

**Gutierrez, Lonna (PIMC) \[Lonna.Gutierrez@ihs.gov\]**

**Fri 9/22/2006 12:08 PM**

Tim,

I agree that this or similar Pain website needs to be available to all
IHS. It should also stand on its own and not be under palliative care.
My vision would be to have a website manager, who could be available,
electronically, to collaborate on all pain questions posed, by IHS
staff, whenever they are asked. Such a website would need to have a
manager, who is a specialist in pain, who can select correct scientific
information and resources that are appropriate to the standard of care
and do not present commercial, ethical bias.

Some drug info., like Methadone drug interaction, is difficult to find
and difficult for the nonclinical provider to judge. The site I have
chosen is created by the leading scientists/clinicians in the field and
is the most up to date. This would be a critical resource for IHS staff
as Methadone use for pain will be more and more prevalent as it is a
long acting opioid that works for neuropathy and it is cheap. The
problem with the drug is its MULTIPLE, often unpredictable, drug
interactions and its 190 day half-life. Without these clinical
pharmacodynamic insights, the drug can be a killer. Indeed, the
unintended death rate from the use of this drug has skyrocketed. If
every IHS provider read the section on *Methadone Drug Interactions*,
IHS outcomes would be better and safer.

    Since I am retiring, I created the site in the hope that IHS would
recognize the value of pain resources and continue the effort. When I
started in pain mgmt., we had nothing. I created the pain assessment and
reassessment forms so that anyone who used them would be in compliance
with the law whenever opioids were used. Just using the forms and
following the format can help clinicians understand how a pain mgmt
specialist thinks and how we begin to formulate a treatment plan. I am
sure there are better forms out there but these are free and I invite
anyone who wants to learn more to download a copy and use them. They can
help you get started safely!

**Neufeld, Brenda G (TUC)**

**Thu 9/21/2006 7:15 AM**

I recently was told that there are some outpatient clinics which tell
patients that they do not honor DNR's, and that this is allowed by JCAHO
(clinics just have to tell patients whether they do or not).  I find
this rather dismaying.  I've not been able to find out much about
this---does anyone have more information/policies about DNR's/advanced
directives and outpatient clinics?  Thanks.

Brenda Neufeld

**Finke, Bruce (IHS/NAS) \[Bruce.Finke@ihs.gov\]**

**Fri 9/22/2006 4:44 AM**

The IHS manual chapter that addresses advance directives (Chapter 26) is
targeted toward the inpatient setting.

 

Nashville Area Elder Health Consultant

Indian Health Service Elder Care Initiative

413-584-0790

[www.ihs.gov/medicalprograms/eldercare](http://www.ihs.gov/medicalprograms/eldercare)

**Heath, Stephen W. (ASU) \[Stephen.Heath@ihs.gov\]**

**Fri 9/22/2006 11:00 AM**

Both Chapter 25, Guidelines for Withholding CPR, found at:

<http://www.ihs.gov/PublicInfo/Publications/IHSManual/Part3/pt3chapt25/pageone.htm>

and Chapter 26, Patient Self-Determination and Advanced Directives,
found at:

<http://www.ihs.gov/PublicInfo/Publications/IHSManual/Part3/pt3chapt26/pageone.htm>

may give Brenda some guidance.  The policy statements for each chapter
are pasted here:

Chapter 25

POLICY. All patients shall be presumed as having consented to
cardiopulmonary resuscitation unless there is documentation in the
medical record indicating the contrary. Unless a \"Do Not Resuscitate
(DNR)\" order is present in the medical record, hospital and clinic
staff will initiate resuscitation in the event of cardiac or respiratory
arrest except in a medically futile situation. This policy applies to
all IHS hospitals.

Chapter 26

POLICY. The IHS respects the patient's right of self-determination and
supports patient participation in health care decision making. This
policy applies to all IHS hospitals and health care facilities.

I am not sure, Brenda, if you are referring to IHS-operated clinics,
tribally-operated clinics, or somewhere else.  If any IHS-operated
clinics are not honoring DNR, I would certainly be interested in knowing
which one(s) that is.

Thanks,

Stephen W. Heath, MD, MPH

IHS Risk Management Program

\(505\) 248-4047

**Long, Bernard \[Bernard.Long@ihs.gov\]**

**Fri 9/22/2006 1:47 PM**

Regarding a clinic perspective:

This is not always on the mind of professionals in a free-standing AMB
clinic.  Some have ER or Urgent Care services and may be more
identifiable in those situations.   But in a clinic we are not dealing
with O-beds or Med-surg processes.  And since patients are not carrying
their Medical Records, DNR status may not be known.  If a code presents
itself and DNR-status is identified by previous knowledge or
accompanying family member, staff may very likely initiate CPR.

Patients would be stabilized and transported to a higher level of care.

If a clinic states that we Honor DNR, we violated our own policy. We
would absolutely honor the patient's right of DNR when we know it
exists.  But in a clinic, DNR may not be absolute.  A policy of we will
when we know and will not honor when we don't, seems very weak.

Bernie Long

Ft Thompson Health Center 

**Neufeld, Brenda G (TUC) \[Brenda.Neufeld@ihs.gov\]**

**Mon 9/25/2006 7:22 AM**

The information was stated as an anecdote without any specific clinic
names\--which got me interested into looking into the issue.  I'm
looking at the JCAHO standard which states "The hospital addresses the
wishes of the patient relating to end of life decisions", and then have
many appropriate elements of performance including having policies,
giving patients written information, documenting whether a patient has
signed an advance directive, etc.  However, there is one section which
states,

For Outpatient Hospital Settings:  The hospital's policies address
advance directives and specify whether the hospital will honor the
directives.

This seems somewhat inconsistent with all the other sections---thus my
confusion! 

**Domer, Tim (FDIH) \[Tim.Domer@ihs.gov\]**

**Mon 9/25/2006 9:50 AM**

Brenda, I agree that this line does not appear to make sense, because
Courts have made it clear that with rare exceptions, the wishes of the
patient will be followed. Perhaps in the context or paragraph in which
the line occurs it may become clearer.

This does bring up what I believed is are two important points and the
reason for the questions I posed earlier about what your SU means by
"obtaining Code Status" , the meaning of DNR status and whether or not a
"DNR" patient could be admitted to an ICU. Those questions were based on
personal experiences and on review of the literature.

There seems to be some widespread confusion among the wider medical
community on what "DNR status" means.

A Do Not Resuscitate order, or designation in a patient's record, means
one thing and one thing only. In the event of a cardio-pulmonary arrest
no CPR will be started. Period. Nothing else should be implied or
assumed. A DNR order or designation does not give any direction on any
other situation or condition. That is why it is so important to develop
and advanced directive or at least to document a discussion with a
terminal patient, or family of the patient if the patient cannot or does
not want to speak for him/her self, about what they understand or desire
in regard to aggressive medical care at the end of life.

"DNR status" should have no relevance to hospital admission, ICU
admission, surgery, IV antibiotics, IV hydration etc. A decision on each
of these other issues must be made on its own merits after discussion
with medical providers, patient and family.

The second point is the fact that a great many medical providers and the
general public, do not know the efficacy of CPR in the first place. CPR
is a medical procedure. When we "obtain Code Status" we are giving and
getting informed consent about a specific medical procedure. As with all
informed consent the emphasis must be on INFORMED. There is a large body
of well-documented evidence that performing CPR on an older person with
co-morbidities is futile. With very rare exceptions the only possible
outcome -- other than death, is prolonged suffering, before dying again.

Once a patient and family understand the facts of the outcomes of CPR
there is a very high likelihood that they will make it clear that they
do not wish the traumatic experience on themselves or a loved one.

In any discussion on "Code Status" I address the issue of CPR by
describing the procedure and going over the outcome data with the
patient and family. I also frame the discussion in the context of
suffering. No one wants themselves or a loved on to suffer
unnecessarily. After this discussion I have never had a patient or
family indicate that they want CPR performed.

The discussion then quickly turns to address the hopes and fears of the
patient and family. We discuss their understanding of what is going on,
including their understanding of medical options. We discuss how the
illness has impacted the lives of those involved. We discuss social and
spiritual needs.

Once this discussion has taken place the development of a formal or
informal advance directive becomes much easier. If nothing else the
discussion about the patient's wishes is documented in the medical
record. A formal AD can be developed later.

The most important thing is to start these discussions before a critical
situation has been reached. Unfortunately all too often we are reluctant
to bring up these issues even with patients we know have a terminal
illness or who have a clearly worsening course of illness.

One rule of thumb on when it is appropriate to start these discussions
is: "if it would not surprise you if the patient were to die in the next
year it is time to start a discussion on end-of-life issues".

I have posted a review of the literature and position statements of the
Geriatric Society of America at the URL below

I hope people find these helpful.

Timothy Domer M.D.

# 

# EFFICACY OF CPR IN THE ELDERLY

<http://www.ihs.gov/MedicalPrograms/MCH/F/documents/CPRElderly204.doc>

**Neufeld, Brenda G (TUC) \[Brenda.Neufeld@ihs.gov\]**

**Tue 9/26/2006 10:17 AM**

Unfortunately I don't see any more explanation in the JCAHO manual.  I
was forwarded the Phoenix Indian Medical Center Advance Directives
policy (thanks!), which has a statement in one section:

3.  Signs will be posted in the appropriate areas of the hospital which
    state:  "Please be aware that Advance Directives will not be honored
    during elective surgery, elective procedures or emergency care. 
    Please ask hospital staff for additional information.

Perhaps someone from PIMC could comment on that section.  Maybe it has
to do with Arizona's Prehospital Medical Directives, a separate form
that the patient completes, which apply to EMS and ER care.  Is the
Prehospital Medical Directive honored in the PIMC ER if the patient has
one?  If the patient has requested DNR status in an advance directive,
would that be honored in the ambulatory (outpatient vs. ER or surgery)
setting? 

I agree about the widespread confusion about the term "DNR", and I also
agree that we often address these issues too late with individual
patients.  I think this is a valuable discussion that can help us
improve our end of life care.

Brenda Neufeld

**Kaur, Judith S. M.D. \[kaur.judith@mayo.edu\]**

**Tue 9/26/2006 12:39 PM**

These are very important policy issues to sort out!  More physician and
patient education will be essential.

Judith

**Domer, Tim (FDIH) \[Tim.Domer@ihs.gov\]**

**Tue 9/26/2006 10:19 AM**

I believe the source of the comments pertaining to not honoring Advanced
Directives has been found.

The Phoenix Indian Medical Center Advanced Directives policy, dated June
2005, states the following in Section V, part B 3:

## V  B.   Ambulatory Patients

### Patient registration staff will ask all new ambulatory care patients if they have an advance directive.  If they have an advance directive, they will be requested to furnish a copy to include in their medical record.  Patients are provided with a copy of the "Advance Directive" flyer as part of the information they receive as new patients.  If they are interested in additional information, they are directed to the Patient Advocate's office where they will be provided a copy of the "Five Wishes" booklet. {#patient-registration-staff-will-ask-all-new-ambulatory-care-patients-if-they-have-an-advance-directive.-if-they-have-an-advance-directive-they-will-be-requested-to-furnish-a-copy-to-include-in-their-medical-record.-patients-are-provided-with-a-copy-of-the-advance-directive-flyer-as-part-of-the-information-they-receive-as-new-patients.-if-they-are-interested-in-additional-information-they-are-directed-to-the-patient-advocates-office-where-they-will-be-provided-a-copy-of-the-five-wishes-booklet. .unnumbered}

### For ambulatory patients who already have a medical record, "Advance Directive" flyers will be prominently displayed and available at each patient registration desk. {#for-ambulatory-patients-who-already-have-a-medical-record-advance-directive-flyers-will-be-prominently-displayed-and-available-at-each-patient-registration-desk. .unnumbered}

3.  Signs will be posted in the appropriate areas of the hospital which
    state:  "Please be aware that Advance Directives will not be honored
    during elective surgery, elective procedures or emergency care. 
    Please ask hospital staff for additional information.

While I think I understand the point that is being addressed, I wonder
if having such signs in our hospitals might cause unnecessary confusion
and anxiety. They fly in the face of what we try to accomplish with
developing ADs with our patients, namely to have patients express, in
writing, their wishes in regard to aggressive care at the end of life.
This kind of blunt language may well be taken as paternalistic and
disrespectful by some patients -- and staff. Preparing an AD is not easy
for many people and seeing a sign that states "we do not honor your AD
here" may be quite an affront.

In addition the policy appears to be inconsistent in that it states that
the AD will not be honored in the OR and during emergencies -- yet it
includes the ER with places it *will* be honored. Also, isn't a cardiac
arrest an "emergency"? If so, this policy indicates that the AD will not
be honored.

Most surgeons will require the patient to suspend a "DNR" request during
surgery -- which makes sense because the place where CPR is the most
effective is when an arrest occurs while on a monitor with trained
personnel directly at hand. Any decision regarding suspending the AD
should be made directly with the patient or surrogate, though, rather
than being posted as a sign.

I think we split hairs in trying to develop inpatient vs outpatient ADs.
An AD can state what kinds of artificial interventions the patient would
desire, or not desire, regardless of location. We have code carts all
over the hospital, including outpatient clinics. ALS ambulances are
basically an ICU on wheels. If a situation, such as emergency surgery,
comes up that is not covered by the AD, a discussion is required.

The IHS policy has enough flexibility to be applicable to both inpatient
and outpatient situations. It allows for determinations of futility to
be made by the physician, even if there is no DNR order or if a "Full
code" status is inappropriately in place. It stresses the need for
dialog with patients, family and staff. It also indicates the few
specific situations in which CPR will be done even if the patient has a
DNR AD.

As previously stated, though, in the vast majority of cases, especially
with older patients with chronic illness or significant co-morbidities,
the "Code Status" part of the AD is pretty simple and straight forward,
if one stresses known outcomes from CPR and the very high probability
that CPR will either be ineffective or lead to greater suffering.

Tim Domer M.D.

**Domer, Tim (FDIH) \[Tim.Domer@ihs.gov\]**

**Wed 9/27/2006 6:28 AM**

Clearly a great deal more education and discussion about end-of-life
issues and the reasons for preparation of ADs is needed -- as Dr. Kaur
pointed out. This education should occur locally and nationally.

The following scenario was sent to me. I was given permission to post it
in order to push the discussion on why we should encourage and help our
patients to prepare ADs.

There should be no difference between "Inpatient and Outpatient ADs"
 and with very rare exceptions -- that must be discussed directly with
patient and family -- the AD must be honored.

Subject: RE: Anyone have more information/policies about DNR\'s/advanced
directives and outpatient clinics?

 

Tim,

 

This particular e-mail is quite timely for us, since I recently heard
one of our administrators (perhaps courtesy of interactions with PIMC
staff) suggest that we adopt the same policy and signage in our
clinics.  I agree with your thoughts about the signs and the cause for
confusion or anxiety.

 

A specific scenario comes to mind, and I don't see how it could be
avoided:  A patient with ESRD arrives by van for his regular on-site
dialysis and collapses upon entry into the facility.  CPR is started,
and he is immediately taken to the ER down the hall.  After
resuscitation attempts in the ER, the medical record finally arrives
indicating he has a DNR request.  By that time, he has a pulse and blood
pressure, is unconscious, family is not available, and he is sent to an
ICU at another facility where he remains for nearly 2 weeks before
expiring.

 

Is this one type of scenario that may partially drive the policy
described in line #3?

 

My reply:

 

I think it would be monstrous if we have clinics starting to put up
signs stating that we do not honor ADs. It would set the whole process
back years and completely undermine trust between patients and
providers. The IHS is already viewed with suspicion by many of our
beneficiaries. This would be a disaster.

 

My thoughts on the case you present:

 

1.  I would look at why the AD was not readily available in the clinic
    in which he was being seen. Where are copies of the AD kept?

```{=html}
<!-- -->
```
1.  In the patient, who is already receiving artificial life-sustaining
    treatment, there is essentially no chance that he would survive to
    live even at his pre-arrest condition. If his initial rhythm was
    asystole CPR should be withheld or discontinued.

2.  If CPR is started out of good faith -- because the DNR status was
    not known - all artificial means should have been stopped when the
    "code status" became known. The patient should not have been
    transferred. He should have been admitted for comfort care and to
    allow the family to join him to spend whatever time he had left.

3.  The IHS policy allows for physicians to make the determination not
    to start CPR when in their INFORMED opinion they believe CPR would
    be futile and serve only to prolong suffering. That would have been
    the case with this patient.

4.  I really don't know what the framers of VB3 had in mind when they
    wrote that paragraph. My impression, though, is that it was not
    driven by the scenario described.

 

I think this discussion is critical because it appears that decisions
and policies are being made without full knowledge of the medical
outcomes evidence or complete understanding of why we must do everything
in our power to encourage and help our patients develop ADs.

 Tim

**Domer, Tim (FDIH) \[Tim.Domer@ihs.gov\]**

**Tue 9/26/2006 3:32 PM**

This is the link to the Living Will (AD) that the Arizona State Gov. has
established for AZ residents.  It appears to be very straight forward
and does not indicate that a separate pre-hospital form is required.

Many States have established EMS DNR forms that patients keep in their
homes -- on the refrigerator or over their bed - which indicate to the
EMS personnel that the patient has an AD and does not want CPR
performed. Perhaps that is the "Pre-hospital Medical Directive" to which
people are referring. It is PART of the AD process, not separate from
it.

Tim Domer

<http://www.azag.gov/seniors/life_care/LivingWill.pdf>

**Burt Attico <BabyDoc53@msn.com>**

**Sat 9/23/2006 7:46 AM**

I don\'t know if any of you have seen this free CME from Medscape

"The Last Hours of Living: Practical Advice for Clinicians"

(URL below\*)

It includes:

-The Last Hours of Living: Practical Advice for Clinicians\
-Introduction to the Last Hours of Living\
-Preparing for the Last Hours of Life\
-Physiologic Changes and Symptom Management\
-Two Roads to Death\
-When Death Occurs\
-Notifying Others of the Death\
-Pronouncing Death\
-Summary of Take-Home Lessons

Burt Attico

\*The Last Hours of Living: Practical Advice for Clinicians\
<http://www.medscape.com/viewprogram/5808>

CCC Editorial comment -- Neil Murphy

Medscape is a free resource, but you need to register with a password

It's pretty straightforward. If you have problems, please let me know

This particular module offers some good advice on common problems about
end of life care