Communication in End of Life
Care: What’s New?
Section Chief, Palliative Care
Department of Internal Medicine
University of New Mexico
[email protected]
 No conflicts of interest to disclose
Health Care Debate 2009
Health Care Bill (HR 3200): 7/09
 “Advance Care Planning
A senior and a medical
practitioner (MD, PA, NP)
discussing “advance care
planning, if…the
individual involved has
not had such a
consultation within the
last 5 years.”
Reimbursement by
 Voluntary
“Advance Care Planning Consultation”, p. 425
 Explanation by the practitioner of
 “…advance care planning, including key questions and
considerations, important steps, and suggested people to talk
 “…advance directives, including living wills and durable
powers of attorney, and their uses”
 “…the role and responsibilities of a health care proxy”
“Advance Care Planning Consultation”, p. 425
 Explanation by the practitioner of
 “…the continuum of end-of-life services and supports
available, including palliative care and hospice, and benefits
for such services and supports that are available under this
 “…orders regarding life sustaining treatment or similar
 “Provide a list of national and State-specific resources to
assist consumers and their families with advance care
Euthanasia? 7/09
“This provision might
start us down a
treacherous path toward
euthanasia if enacted
into law.”
House Minority Leader
John Boehner
Death Panels? 8/09
 “And who will suffer the most
Former Alaska Governor Sarah Palin
when they ration care? The
sick, the elderly, and the
disabled, of course. The
America I know and love is not
one in which my parents or my
baby with Down Syndrome
will have to stand in front of
Obama’s “death panel” so his
bureaucrats can decide, based
on a subjective judgment of
their “level of productivity in
society,” whether they are
worthy of health care. Such a
system is downright evil.”
Rationing care? 8/09
 “[I]t was President Obama
himself who suggested that
seniors who don’t have as long
to live might want to consider
just taking a pain pill instead of
getting an expensive operation
to cure them,” said Huckabee.
 Under President Obama's health
care plan, (Ted) Kennedy would
have been told to go home to
take pain pills and die" during
his last year of life, rather than…
freely d(oing) what most of us
would do. He chose an expensive
operation and painful follow up
Former Arkansas Governor
Mike Huckabee
Newsweek 9/09
 2006 health care expenditures:
>$2 trillion
 Population > 65 yo:
2006: 37.3 million
2030: 71.5 million
 30% of Medicare funds each
year are spent on terminal care
for 5% of the program's
Nearly all Medicare beneficiaries
spend some time in hospital in last
year of life
 78% of last-year-of-life expenses
occur in the month before death
(primarily secondary to life
sustaining care)
 Rationing- 1962 Dialysis “God
Squads”; 2009: Insurance,
Transplant Committees, No
money/No Care, Non-citizens,
Clinical Trials, Oregon Health Plan,
“Americans want the best, they want the latest, and
they want it now”
 Do end of life conversations help or harm patients?
What is the evidence?
 Example: Code status/DNR discussions
Communication: What works? What doesn’t?
Review an 8 step process to discuss code status
Setting the Stage
Do patients want to discuss EOL care?
 <50% patients who want to have EOL care discussions
with physicians do so (cancer and non-cancer)
 Advanced Cancer:
 25% of patients with incurable cancer aren’t told that
 65% no time-based prognosis discussed
 1/3 of patients receiving chemotherapy believe its intent is to cure them
 20% of patients receive chemo in the last 3 weeks of life.
 Providers less likely to have EOL discussions for patients
with non-cancer illnesses
Matsuyama J Clin Oncol 2006. Hagerty Ann Oncol 2005. Ray A J Palliat
Med 2006. Zhang ASCO 2008. Mitchell Supp Care Cancer 2007.
Do we do a good job of discussing the future?
 As a profession – no. Why not?
Perceived lack of training
Take away hope
No time to address emotional needs
Harm patients (they’ll give up and die sooner)
Hurt our relationship with the patient
What if we’re wrong? Uncertainty about prognosis
It’s emotionally difficult for us
Explicit requests by patient/family not to discuss
 This is despite strong evidence patients benefit from
this and consistent evidence they want to talk about it
Hancock Palliat Med 2007.
Elephant in the Room
Prognosis affects choices about CPR
 People can make better medical decisions (better =
more informed) when they know their prognosis
41% of elderly patients would want CPR for an in-hospital
cardiac arrest
Decreases to 22% when told their probability of survival to
discharge was “10-17%”
11% with a chronic/terminal illness (life-expectancy <1
year) would want CPR
Decreases to 5% when told prognosis “0-5%” probability of
survival to discharge
Murphy et al. NEJM 1994
Prognosis affects choices about EOL care
 Hospitalized cancer patients with prognosis <6
Those who thought prognosis >6 months were much more
likely to…
Want life-prolonging treatments
 Want ‘aggressive’ treatments (ICU, ventilators)
 Die on the vent
…Than those who thought prognosis was <6months.
Survival was the same in both groups
Weeks et al. JAMA 1998.
Coping With Cancer Study (CWCS)
 Coping with Cancer Study:
 332 patients with metastatic cancer and progression through 1st-line
chemo and their caregivers (dyads)
 NCI/NIMH funded, multisite, prospective cohort
 71.3% white; 14.8% Black; 11.9% Hispanic; 1.7% Asian and 51.1% male
 Median survival: 4.4 months
 123/332 (37.0%) reported EOL discussions with MD at baseline
 Sicker patients: lower performance status, higher symptom burden,
shorter survival time
 No difference in age, sex, race, religion, education, cancer type,
marital status, race/ethnicity, health insurance status
Wright et al. JAMA 2008
Do EOL conversations cause emotional harm?
 CWCS: Discussions about EOL were NOT associated
with feeling:
“Depressed”, “sad”, “terrified”, “worried” or meeting DSM
criteria for mental disorder
Wright et al. JAMA 2008
Care choices affected by EOL discussions
 Patients who had discussions about EOL with physicians
 More likely to:
Accept diagnosis as terminal (59.2% vs. 28.7%) p<.001
Prefer medical treatment focused on relieving pain and discomfort
over life extending therapies (52.9% vs. 28.7%) p<.001
Complete a DNR order (63.0% vs. 28.5%) p<.001
 Less likely to:
Receive mechanical ventilation (1.6% vs. 11.0%) p=.02
Undergo resuscitation effort (0.8% vs. 6.7%) p=.02
Be admitted to an intensive care unit (65.5% vs. 44.5%) p=.03
Wright et al. JAMA 2008
QOL and aggressive care
 Quality of Life
 In final week of life, QOL decreased with increasing number of
aggressive interventions (even after adjustment for severity of
illness) (6.4 vs. 4.6, p=0.1)
 In final weeks of life, QOL increased with hospice care
Longer on hospice, higher reported QOL (6.9 vs. 5.6, p=0.1)
Wright et al. JAMA 2008
Do conversations about EOL harm families?
 No! If physicians discussed EOL options/the future
with patients, bereaved families reported:
Higher satisfaction with communication from physician,
comfort of patient
Better understanding of “what to expect” as family member
Teno J et al. JAGS 2007. Engel SE et al. JAGS 2006.
CWCS: Caregiver Outcomes
 Caregivers of patients who received aggressive care
in last week of life were more likely to:
Develop Major Depressive Disorder (OR 3.37)
Experience regret (p=.01)
Feel unprepared for patient’s death (p<.001)
Have poorer overall QOL (p=.004)
Have poorer self reported health (p=.04)
Wright et al. JAMA 2008
CWCS: Caregiver Outcomes
 Better QOL in patients associated with
 Better overall QOL (p=.001)
 Self reported health (p=.004)
 Physical functioning (p=.02)
 Mental health (p=.04)
 Felling better prepared for the death (p=.002)
 Less regret (p<.001)
 In caregivers at 6 month follow-up
 “Cascading benefits” for patients and caregivers
Wright et al. JAMA 2008
EOL discussions decrease health care costs
 CWCS: 188/603 participants (31.2%) reported
EOL discussions at baseline
no difference in cancer type, recruitment site, treatment
preferences, illness acknowledgement, SES
 Question: Do end of life conversations result in
cost savings (aggregate costs)?
Did not have discussion:
 $2917 ($285/day)
Had discussion:
 $1876 ($177/day)
Zhang B et al. Arch Intern Med. 2009
EOL discussions decrease health care costs
 EOL discussion reduced cost by 35.7% (less use
intensive interventions)
 Higher medical costs associated with worse physical
distress (p=.003), worse overall QOL per caregiver
 Survival was the same in both groups…..
Zhang B et al. Arch Intern Med. 2009
Association between cost and quality of death in the final week of life (adjusted P = .006)
Zhang, B. et al. Arch Intern Med 2009;169:480-488.
Copyright restrictions may apply.
Outcomes of EOL discussions
 Patients who have EOL discussions with their doctors
 More likely to:
Have an advance directive
Understand illness terminal
Die at home
Have EOL choices followed (i.e. DNR order in patients who want to be
Choose hospice
Improved QOL for EOL patients (sx relief, MD communication, emotional
support, being tx with respect)
Decreased Major Depression in bereaved caregivers
 Less likely to:
 Have a feeding tube
References 1-7
What do patients want to know?
 Studied extensively in Western world
 Mostly cancer – although other diseases
 Patients want
Realistic, truthful information
What will happen is as important as time
How they are told is as important as what they are told
Hope, optimism
How one is told
 Loved ones present
 Adequate time
 Acknowledgment of emotional, spiritual, existential
impact of having a life-limiting disease
 ‘Attitude’ of the clinician
 Respect for patient’s emotional state
Hagerty Ann Onc 2005. Clayton Supp Care CA 2005. Curtis J Palliat Med 2008.
Hope and Optimism
 Qualitative research:
 Clayton Cancer 2005: Explored with advanced cancer
patients n=19 (& caregivers) how can clinicians can foster
hope when they talk about future.
 Major themes
Emphasize what can be done
 Emotional support, care, dignity, listening, non-abandonment
 Practical support (help in home)/Discuss day-to-day living
 Truth-telling but ‘not blunt,’ leaving space for the unanticipated
Hope & Optimism – What generates hope?
 The top 4 hope-destroying actions by physicians
 Appeared nervous or uncomfortable
 “Gave my prognosis to my family, then gradually told me”
 Used euphemisms
 “Avoided talking about the cancer and only discussed
Hagerty J Clin Oncol 2005
Hope & Optimism
 “Hope” =
 a sense of receiving good care…“best” care – all the right
things are being done,
 non-abandonment,
 confidence and warmth with the physician,
 completeness of information,
 And NOT being told unambiguously “There is no hope of
 These themes far out-shadow the way preserving
hope is often conceived: half-truths, concealing
information, only positives
“Most patients…”
 …means some patients
 Don’t want to talk about the future
 Don’t want straight-forward assessments of prognosis
 Don’t want to talk about anything ‘negative’
 Want us to promise them cure, recovery
 …doesn’t necessary include the patient in front
of us
What will happen…
 …Is just as important as time
 Near universal finding when looked at
 Impact of illness & its treatment on their lives
 What to expect – treatment and functional courses
 True in cancer, CHF, COPD, dementia
 Near the end…
Places of death, impact of death on family, help they can get
Hagerty et al Ann Oncol 2005. Curtis et al. Eur Resp J 2004.
Curtis et al. Chest 2002. Knauft et al. Chest 2005.
Can’t I just give him an Advance Directive?
 Patient Self-Determination Act (PSDA) 1990
 Requires that all Medicaid and Medicare providers
inform adult patients of right to:
Participate in and direct their own HC decisions
 Accept or refuse treatment
 To prepare an Advance Directive (Living Will, POAHC)
 Be informed of healthcare facilities policies on these rights
Can’t I just give him an Advance Directive?
 Mixed results:
 Hospital LOS, place of death (home vs. hospital), costs of hospital
stay, medical treatments not affected by AD (ref. 19-27)
 Teno JM et al. JAGS 2007 (retrospective)
Less Life Sustaining Treatment, greater use hospice, less likelihood of
terminal hospitalization
Families : fewer concerns about physician communication; more aware of
“what to expect” with the dying process
 ¼ unmet pain needs
 ½ inadequate emotional support for dying person
 1/3 inadequate family support
 Advance directives should be the start of a conversation,
not the end…..
Discussions About Code Status
Case 1: RF
 A 68 yo man is newly diagnosed with metastatic
hepatocellular cancer, alcohol related liver failure,
and impending kidney failure.
 Because of his poor functional status (ECOG 3-4)
and organ failure, he is not a candidate for
chemotherapy. The oncologist told him this.
 Prognosis: days to a week or two
 Medicine Team: “He seems to have unrealistic
expectations. I asked him “Do you want us to do
everything? and he said “Yes”. So he’s a full code.”
CPR- How effective is it?
 Inpatient setting:
 40% survive the CPR effort
 1/3 survive to leave the hospital (i.e. 14% of total)
 So 86% of patients who code in hospital die in the hospital
More successful if CPR is in OR, ICU, Cath lab
 Depending on study, 7-26% survive a CPR effort
MH Ebell et al. J Gen Intern Med. 1998 (Meta-analysis); Tresch D et
al. JAGS 1994; Warner SC and Sharma TK. Resuscitation 1994.
CPR-How effective is it?
 Low likelihood of survival if:
 Sepsis
Metastatic cancer
1/73; 0/42 survived CPR effort
0-14% survived CPR effort
Renal failure
Need for vasopressors or inotropes
2/55 survived CPR effort (both had reversible conditions, i.e. AMI,
 Nursing home residents
 0-1.7% survive CPR effort
 Age alone not a RF
References 30-38, 41
Outcome of CPR in the ICU Setting
 114 MICU patients underwent CPR
 Mean age 59
25% malignancy, 18% vascular disease, 7% chronic liver disease, 5% ESRD,
5% COPD: 34% sepsis, 20% PNA
33% had been housebound or bedridden prior to admission
 44% survived initial effort, but…
 Only 31% with CPR effort survived >24 hours, and….
1/29 malignancy; 1/39 sepsis survived effort
 Only 5% survived to discharge.
6 patients survived to hospital D/C (5% patients)
4/6 died in one year; 2 had severe disabilities and were alive at 1 year
 Patients with chronic medical conditions undergoing CPR
even in an ICU setting seldom survive to discharge…
FJ Landry et al. Arch Intern Med 1992
Problems that arise in DNR discussions
 Expecting patients to make decisions without
adequate information (i.e. un-informed consent)
Treatment options
 CPR discussions MUST be framed in terms of the
overall goals of care and care plan, not in isolation
 Weigh benefit/burden of each treatment option
Can we do it? Should we do it?
 Common phrases:
 “What would you like us to do if your heart stops?”
 “Do you want us to restart your heart if it stops?”
 “Do you want us to do everything?”
 “You don’t want us to break your ribs, and shove a tube down
your throat, and hook you to a breathing machine, do you?”
Barriers to patients accepting DNR
 DNR only refers to this medical intervention
 Many patients and families fear that
DNR=“No Care”
 Unfortunately, medical teams often reinforce this
We can’t take him to the ICU if he’s DNR
He can’t get antibiotics if he’s DNR
We think the best thing is to “withdraw care”
Steps for Discussion of CPR
 Quiet setting; clarify goals for the meeting
 Determine decisionality- make sure right people are at
meeting (team/decision maker)
 Clarify in your mind beforehand what is best medical care
 Who is this person? “Tell me about your Dad. I have all the
medical information, but want to know more about him as
a person. Can you tell me a little about him, and how
things were going before he came into the hospital?”
Steps for Discussion of CPR
 Ask patient/family what they know about medical
condition- make no assumptions!
 Present medical information; clarify
 “Have you ever thought about what your wishes
would be if you were ever in this situation?” or “ Has
your father ever talked about what would be most
important to him if he was ever in this situation?”
Helpful Communication Phrases
 Make recommendation in terms of overall plan of care
 “Given that your cancer is growing and not responding to
chemotherapy, I think the best plan would be that we don’t use any
more chemotherapy.”
 “Your father is very sick. His heart, liver and kidneys are failing,
despite our best medical efforts. He is dying.”
 Judge whether the time is right to talk about CPR, or
whether this would best be left to another discussion
 These discussions are often a process….
Helpful Communication Phrases if Team Believes
DNR is Not Appropriate
 I want to talk about something that’s hard to discuss.
 When someone’s heart and breathing stop, in other words
when they die, we have a lot of things we can do to attempt
to try and reverse this. This is called cardiopulmonary
resuscitation, or CPR.
 In patients who are very sick as you are, CPR has a low
likelihood of working. In other words, patients rarely
survive the CPR effort, and if they do, it’s extremely rare to
make it out of the hospital.
Helpful Communication Phrases
 CPR may just prolong the dying process, cause
suffering and not bridge you to getting better,
because it doesn’t fix the cancer (or whatever
underlying process is present).
 I would recommend that we protect you from CPR,
which will only harm you and not offer benefit, and
not do this when that time comes. This is what’s
called “Do Not Resuscitate.”
Helpful Communication Phrases
 Instead, I would recommend that we make sure you
are comfortable, as pain free as possible, and well
cared for as you are dying.
 What are your thoughts about this?
 Remember it often takes several discussions; people are
processing tough information; give people time (if possible)
and space
 Respond to affect with affect
I can see this is hard for you to hear (reflect on emotion in the
Silence: Can you tell me what your thoughts are? Have you thought
about this before?
Allow silence; let patient determine tempo of discussion
To patient, this is an out-of-control situation. Try and give back as much
control as possible
 If you take something “off the table”, put something
back on:
Symptom control
Family support
Hospice care
 Reassure non-abandonment
 “Even though we can’t fix the illness, there is a lot we
can do to help you and your family in this time. I
want to hear what is most important to you and your
Does the order make sense?
 Don’t let the sun set on a code status order that
makes no sense
Only cardioversion (in a patient who will die a respiratory
Only one shock, then stop
Only for 5 minutes, then stop
Chest compressions without cardioversion
“He wants intubation, but he doesn’t want to be on a
 EOL discussions can benefit patients and families in
real ways; do not cause harm
May take a series of discussions…
 EOL counseling should optimally start before a crisis
 EOL discussions can help ensure patient autonomy,
not take it away
 Communication skills training is needed to help
Major education focus of Palliative Medicine team: medicine
residents; oncology, geriatric and pain fellows.
Better communication skills=less anxiety for HCP’s?
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 Thank you! Questions?

Communication in End of Life Care