Improving Communication at the End of Life Sydney Morss Dy, MD, MSc Physician Leader Duffey Family Palliative Care Initiative Johns Hopkins Kimmel Cancer

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.


Objectives

Review current research on the need for improved communication

Describe evidence on palliative care and improving communication

Discuss possible approaches to improving communication


The universe is made of stories,

not of atoms.

- Muriel Rukeyser, Poet


“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…”


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


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


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


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


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


Evidence on improving communication

Palliative care

Experience at Johns Hopkins

Increasing communication through structured interventions

Improving content

Other approaches


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


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


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.


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


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


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


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


At the individual provider/patient, unit, or institutional level:

- What are barriers to better communication?

- What are possible solutions?


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


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


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


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


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


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.”


At the state or federal policy level:

- What are barriers to better communication?

- What are potential solutions?

Documents

Improving Communication at the End of Life Sydney Morss Dy, MD, MSc Physician Leader Duffey Family Palliative Care Initiative Johns Hopkins Kimmel Cancer