Palliative Care: Not Just End of Life Issues

Palliative Care: Not
Just End of Life Issues
Mindy Hoffman, NP-C
Cecilia May, MD
SERH Palliative Care Team
September 8, 2010
Orthopedics vs. Anesthesia
Palliative Care vs. Oncology
Atul Gawande, MD, 8/2/10, The New Yorker,
Letting Go: What should medicine
do when it can’t save your life?
All-out treatment, we tell the terminally
ill, is a train you can get off at any time –
just say when. But for most patients and
their families this is asking too much…
…our responsibility, in medicine, is to deal
with human beings as they are. People die
only once. They have no experience to
draw upon. They need doctors and nurses
who are willing to have the hard
discussions and say what they have seen,
who will help people prepare for what is to
DNR Discussion: Case
 Mrs.
B. is a 53 yo wf with Stage IV
Breast CA mets to bone and liver
admitted with leg swelling found to
be caused by DVT. She has no ACP
documents and you, the MD, are
called to discuss code status.
DNR Discussion Scenario 1
MD: Mrs B, according to hospital rules, I
need to discuss your code status with you.
Do you wish to be a full code or a no
 Mrs B: Ohhh, I don’t know…I’ve never
thought about this before…I don’t want to
die. I still have relatively young children.
 MD: So you want to be a full code?
 Mrs B: Yes, I guess so…
 MD: Ok. (MD leaves the room)
DNR Discussion: Scenario 2
MD: So, Mrs B. You have Stage IV cancer and
now you have DVT. This is not a good situation.
What do you want to do about resuscitation?
Do you want us to do everything?
 Mrs B: Well, I think so. I still have young
children and I want to live.
 MD: You mean, you want us to jump up and
down on your chest, break ribs, and put a tube
down your throat only to end up dying in the
ICU on the vent and not even able to talk to
your family??
 Mrs B: Well, no, not like that…
 MD: OK, so you want DNR status.
 Mrs B: Well, I guess so…
 What
worked? What didn’t?
 Players
 Permission
 Demeanor
 Jargon
 Delivery
 Empathy
 Patient comfort
Stratify your patient
Healthy—discuss advance directives,
resuscitation is designed for this group with
20 – 40% success rate if reversible condition
 Acute/Chronic Illness—Resuscitation may lead
to poor outcome, need to discuss DNR, goals,
meaning of QOL in order to advise the patient
 Imminently dying—Death is not preventable
and resuscitation is not helpful, it is your duty
to advise your patient of this fact
Subtleties of ACP
Know how to start the conversations
 Ask about goals of care--What does living
well mean to you?
 Make Physician Recommendations—do not
expect the patient to know the best choice
for his situation
 Ask probing questions—What does “do
everything” mean to you? Do you know
what that would involve? Do you know the
likely outcome? What outcomes would be
unacceptable to you?
Language Issues
 The
words we use are important and
can have unintended consequences
 Trying to frame things in a positive
light helps patient and family focus
on the patient’s actual goals of care
 Example: “It’s time to think about
being less aggressive with his care”
vs “We will renew our efforts to
treat his symptoms; his comfort and
dignity are our utmost priority”
Method of Communication
 Prepare
for discussion with patient
and family. Understand the
condition, prognosis, review and ACP
documents, know who is the family
spokesperson or “agent”
 Prepare the environment. Sit facing
the patient, eliminate distractions,
have tissues
 Determine what the patient knows
and how much he wants to know.
Method, continued
 Explore
prior experiences, goals of
care, expectations and hopes
 Suggest REALISTIC goals
 Ask permission to discuss details not
yet shared e.g. prognosis
 Speak in general terms when
discussing prognosis
 Respond empathetically
Method, continued
Consider writing key elements of the
discussion and leaving with the patient for
 Give handouts or reference material for the
patient/family to review at a later time
 Review the discussion to assess what they
have heard
 Agree on an action plan and follow up time
 Reassure patient and family we will continue
CARE (not “just comfort care”) despite any
treatment not chosen
Communication Training
 Becoming
part of medical school and
subspeciality curricula
 Data clear that skills can be acquired
and are not assumed to be inherited
 With practice and repetition,
communicating bad news and having
the hard discussions need not be so
painful (for us, that is)
Helpful phrases
 Relaying
bad news: “warning shot”
– I wish I had better news for you today
– Please bear with me, it is difficult to tell you
– I wish things were different, but the test
results are not good
– I know this is very upsetting
– This must seem unreal to you
– I know you must be feeling overwhelmed
– I want to be honest with you, but I wish your
disease was responding better to treatment
Helpful phrases
 Advance
Care Planning
– What do you understand about your health
– I would like to talk to you about possible
health care decisions for the future. This will
make it easier for me to care for you and
make certain that we are following your goals
and wishes
– If you were unable to make these decisions,
who would you trust to make them for you?
– Have you discussed these issues with your
family? Could I help you have that
Helpful phrases
 Determining
decision making capacity
– Will you describe your current condition?
What have the doctors told you?
– Tell me the options for treating X as you
understand them
– Explain to me which option you feel is best
and why
– Some people when they are ill want to
pursue very aggressive things to prolong
life, others may want to focus on comfort
as the priority. Which type are you?
Helpful phrases
Quality of life—understanding the impact
of the disease
– How has your disease interfered with your daily
activities? Your family/friends?
– What symptoms bother you the most?
– What concerns you the most as X progresses?
– Do you feel worried or sad about your illness?
– Many patient wonder about the meaning of all this—
do you?
– What religious beliefs do you have? Do you draw on
them for strength?
Helpful phrases
 Prognosis
– Tell me how you spend your day; are
lying down or resting > 50%
– Has anyone talked to you about what to
– Do have a sense of how much time is left?
Is that something you want to talk about?
– Based on what I see and what you have
told me, I believe that you are dying
Helpful phrases
 Prognosis
– Although I can’t give you an exact time,
in general, patients with your condition
life ___ wks/months to ___ wks/months
– It could be longer and we will do
everything possible to make sure
– Unfortunately, it could also be shorter,
so we should hope for the best, but be
prepared for the worst
Appropriate PC Referrals
 New
diagnosis of life limiting illness
 Help with complex decision-making
and determining goals of care
 Unacceptable level of pain or other
symptom for > 24 hours
 Complex psychosocial or spiritual
 Frequent ER visits for same chronic
Appropriate PC Referrals
 Frequent
readmissions for same Dx
 LOS > 5 days without progress
 ICU patients with poor prognosis or
lack or progress
 Transition to end-of-life comfort care
 Patient or family support for difficult
diagnoses with many physicians
involved in care
EPERC modules and fast facts.
Respecting Choices: Advance Care Planning.
Gundersen Lutheran Medical Foundation.
Letting Go - What should medicine do when it
can't save your life? Atul Gawande, MD, The New
Yorker 8/2/10
Communicating with Seriously Ill Patients: Better
Words to Say, S. Pantilat, JAMA. 2009: 301(12)
Titrating Guidance. Arch Internal Med. 2008.
168 (16) 1733-1739
 Good Communication. J Pall. Med. 2007. 10
(4) 956-957
 Bringing Hope and Healing to Grievingt
Patients with Cancer JAOA. 2007. Supp. 7.
Vol (107)12
 What Should We Say When Discussing Life
Support and Code Status with a Patient? J
Pall. Med. 2010 13 (2) 185-194
 Communication Practices in Physician
Decision-Making for an Unstable Critically Ill
Patient with End-Stage Cancer. J Pall.Med.
2010. 13 (8) 1-8

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