Improving Communication at the End of Life Sydney Morss Dy, MD, MSc Physician Leader Duffey Family...
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Transcript of Improving Communication at the End of Life Sydney Morss Dy, MD, MSc Physician Leader Duffey Family...
Improving Communication at the End of Life
Sydney Morss Dy, MD, MScPhysician LeaderDuffey Family Palliative Care InitiativeJohns Hopkins Kimmel Cancer Center
© 2005, Johns Hopkins University. All rights reserved.
© 2007, 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 communicationIncurable 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
© 2007, Johns Hopkins University. All rights reserved.
Artificial nutritionNurses 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
© 2007, Johns Hopkins University. All rights reserved.
Death Foretold : Prophecy and Prognosis in Medical CareNicholas 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 treatmentSnyder CF, Dy SM et al. ISOQOL 2004
© 2007, Johns Hopkins University. All rights reserved.
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 lifeE 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
© 2007, Johns Hopkins University. All rights reserved.
Hopkins MICU EOL assessmentPoor 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
© 2007, Johns Hopkins University. All rights reserved.
Family perspectives on end-of-life care at the last place of careTeno 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 studieshttp://www.promotingexcellence.org/critical_care/index.html
© 2007, Johns Hopkins University. All rights reserved.
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 yearsLilly CM Am J Med 2000; Lilly CM Crit Care Med 2003
© 2007, Johns Hopkins University. All rights reserved.
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?
© 2007, Johns Hopkins University. All rights reserved.
Omega Life Program December 2002
Case management for adult cancer patientsKey elements:
Comprehensive palliative care assessmentFollowup phone calls to patients, monitoring,
communication with providersActive availability to patientCoordinate care, educate, attend MD visitsFacilitate patient goals
Compared to control population – significantly fewer hospitalizations and more hospice use in the Omega Life group
© 2007, Johns Hopkins University. All rights reserved.
Other approachesProviding 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
© 2007, Johns Hopkins University. All rights reserved.
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
© 2007, Johns Hopkins University. All rights reserved.
Clinical education: Key pointsStart 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
© 2007, Johns Hopkins University. All rights reserved.
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
© 2007, Johns Hopkins University. All rights reserved.
Answering difficult questionsGoals 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?