Transcript Update in Palliative Care and Hospice Sydney Morss Dy, MD, MSc

Improving Communication at the
End of Life
Sydney Morss Dy, MD, MSc
Physician Leader
Duffey Family Palliative Care Initiative
Johns Hopkins Kimmel Cancer Center
© 2005, Johns Hopkins University. All rights reserved.
Objectives
Review current research on the need for improved
communication
Describe evidence on palliative care and improving
communication
Discuss possible approaches to improving communication
© 2007, Johns Hopkins University. All rights reserved.
The universe is made of stories,
not of atoms.
- Muriel Rukeyser, Poet
© 2007, Johns Hopkins University. All rights reserved.
“First they told me the tumor was slow-growing, then
they said it was back. Then it was fast-growing and
before I knew it he was dead. I needed someone to
explain it to me then and I need someone to explain it
to me now. No one told me that he was terminal until
three weeks before he died. The doctors bounced the
ball around - told me to speak to Dr. So-and-So who
then told me to speak to Dr. So-and-So…”
© 2007, Johns Hopkins University. All rights reserved.
Deficits in communication
Incurable cancer treatment discussions:
25% did not discuss incurability
43% did not address life expectancy
56% not presented with alternative to treatment
Treatment and QOL discussed in 34%
Checked for understanding in only 10%
ICU transfers who died:
None had palliative care addressed as an option
Half of DNR decisions made within 2 days of death
Gattellari M JCO 2002; Rady MY Palliative Medicine 2004
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Artificial nutrition
Nurses views of physician communication:
Inadequate time discussing symptom management,
care planning
Inaccurate or insufficient information on prognosis
and likely outcomes, use of jargon and complex information
Patients who had feeding tubes placed (or surrogates):
Little decision-making process; not given options
33-50% felt they had inadequate information
Palliative care patients with more information were more
likely to choose feeding tubes
Dy SM Am J Hosp Pall Med 2006
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Death Foretold : Prophecy and
Prognosis in Medical Care
Nicholas Christakis
Insufficient science on prognostication
Physicians often uncomfortable with prognosis
Physicians’ estimates frequently overoptimistic:
Systematic review found overestimated survival by at
least 1 month in >25% of terminally ill cancer patients
Frequently reluctant to share information with patients
Patients’ readiness to hear prognosis may change over time
Glare P BMJ. 2003;.Lamont EB Ann Intern Med. 2001
© 2007, Johns Hopkins University. All rights reserved.
Top issues for cancer patients
Patients’ Top Issues as Rated by Patients
Information on cancer and its treatment
Knowledge about benefits and side effects
Care coordination
Patients’ Top Issues as Rated by Staff
Symptoms of disease
Side effects of treatment
Snyder CF, Dy SM et al. ISOQOL 2004
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Use of chemotherapy
Patients views’ of palliative chemotherapy: 43% view as
curative, 63% improving survival
Use at the end of life:
41% of patients in the last year of life
31% in the last 6 months
23% in the last 3 months
Rates of use for responsive and unresponsive tumors were
the same
Proposed Medicare quality measure: Chemotherapy in the
last 14 days of life
E Emanuel, 2002; Doyle C 2001
© 2007, Johns Hopkins University. All rights reserved.
Evidence on improving
communication
Palliative care
Experience at Johns Hopkins
Increasing communication through structured
interventions
Improving content
Other approaches
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Hopkins MICU EOL assessment
Poor communication, including nursing-physician
Finding EOL conversations/ decision documentation in chart
Skill with EOL discussions
Timeliness of EOL discussions
Lack of consistent person to facilitate conversations
Varying opinions on what “DNR” means
How to withdraw life support and transition to EOL care
effectively
Moral distress of staff
© 2007, Johns Hopkins University. All rights reserved.
Palliative Care at Johns Hopkins
Quality improvement
MICU: Changing rounds; goals of care policy, education,
and rounds; DNR protocol; including EOL discussion in
MICU documentation forms; bereavement packet; palliative
care booklet; staff surveys
70% of RNs and 100% of physicians felt that EOL
care improved at least moderately
WICU: Palliative care quality indicators
Education
Didactics, case conferences, debriefing sessions, web
modules, rotations, nursing orientation, CME
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Family perspectives on end-of-life
care at the last place of care
Teno JM et al. JAMA. 2004 Jan 7;291(1):88-93.
Mortality follow-back study for nationwide sample of 1578
decedents
Family members of patients receiving hospice services were
more satisfied with overall quality of care
71% rated care as "excellent" compared with < 50% of
those dying in other settings (P<.001).
Concerns about communication and coordination of care
were also lowest for those who died with hospice care.
© 2007, Johns Hopkins University. All rights reserved.
Increasing communication in the
hospital
Large variations exist in rates and methods of DNR and
withdrawal of life support
Symptom management and communication are often
suboptimal
Conflict is extremely common in EOL care
Improving communication and conflict resolution can reduce
LOS without increasing mortality
Multicenter RCTs and observational studies
http://www.promotingexcellence.org/critical_care/index.html
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Increasing communication, ICU
Multidisciplinary care plan meeting within 72 hours of
admission to discuss goals and expectations
Clinical milestones
Palliative care options if not met
Meeting occurred in almost all cases
Reduced median LOS by 1 day with no increase in mortality
Maintained for 4 years
Lilly CM Am J Med 2000; Lilly CM Crit Care Med 2003
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Assess patients’ readiness
We are often reluctant to bring up end-of-life issues, but:
Patients and families usually appreciate discussions
about difficult issues if done well
49% of the time, the idea of hospice was brought up by
the patient
Hospice discussion triggers:
42% - increase in home care needs
16% - escalating pain/symptoms
Casarett D et al. How should clinicians describe hospice to patients and families? J Am Geriatr Soc 2004; 52: 1923-28
© 2007, Johns Hopkins University. All rights reserved.
What information do patients
want about hospice?
Top-rated items were all practical issues:
How often will someone visit?
Who pays for hospice?
What kinds of practical support are provided?
Will we keep seeing the same doctors?
Where can care be provided?
Will we keep getting medications/treatments?
Casarett D, etal. Making difficult decisiona bout hospice enrollment: What do pateitns and famileis want to know? J Am Geriatr Soc 2005
Feb;53(2):249-54
© 2007, Johns Hopkins University. All rights reserved.
At the individual provider/patient, unit, or
institutional level:
- What are barriers to better communication?
- What are possible solutions?
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Omega Life Program
December 2002
Case management for adult cancer patients
Key elements:
Comprehensive palliative care assessment
Followup phone calls to patients, monitoring,
communication with providers
Active availability to patient
Coordinate care, educate, attend MD visits
Facilitate patient goals
Compared to control population – significantly fewer
hospitalizations and more hospice use in the Omega Life
group
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Other approaches
Providing information:
Multicenter RCT of providing an educational pamphlet
on admission to the ICU showed significantly improved
comprehension and satisfaction Azoulay E Am J Resp Crit Care Med 2003
Structuring communication:
Intervention in the NICU using agendas for meetings
with parents - fewer unrealistic concerns, less uncertainty,
better satisfaction Penticuff J Perinat Neonat Nursing 2005
Reinforcing communication:
Systematic review of providing taperecordings of
oncology discussions - better recall and satisfaction Scott JT Cochrane
2003
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Other initiatives/ research
Standardizing discussions about chemotherapy
Improving DNR protocols
Including patient-reported outcomes in cancer care
Integrating palliative care early
Time of diagnosis for incurable cancer
Patient education
Time of admission - CPOE prompt
Unit-based palliative care teams
Staff education - Morbidity & Mortality, Schwartz rounds
Integration into new medical school curriculum
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Clinical education: Key points
Start early
Have all information, discuss with team
Develop a plan, and an agenda for each meeting
Identify decision points in advance
Educate about signs that a decision may be coming
Set expectations
Gentle repetition
Patients may not hear or understand first time
Ensure all staff are communicating consistently
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Drawbacks of autonomy
Often patients are not presented with all options
Can give illusion of avoiding death
Patients not equipped to choose from laundry list
Studies of patient preferences:
Good communication more important than autonomy
Many prefer physician decisions or
recommendations, or shared decision-making
- Ask patient about their preferences for decision-making
- Decisions based on goals of care
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Answering difficult questions
Goals of care policy
“We want you to do everything.”
“Tell us what you are hoping for.” Try to get concrete
information. When presenting treatment options, review
benefits and burdens.
“We still want you to do everything to save him.” (this after
several discussions)
“Let’s continue his (abx, etc) for the next (x) hours/days and
reevaluate then.”
“So what CAN you do for my loved one?”
“(He) has not responded to (xyz) therapy as we had hoped,
but we have many things that we will do to make sure he is as
comfortable as possible.”
© 2007, Johns Hopkins University. All rights reserved.
At the state or federal policy level:
- What are barriers to better communication?
- What are potential solutions?
© 2007, Johns Hopkins University. All rights reserved.