1. Communication in End of Life Care
M4 ICE Seminar
This is a very brief review of important communication skills when treating people with serious illness and near the end-of-life.

2. Words Matter See PERL cards Can lead to sense of abandonment-
“Nothing more we can do”
“Time to stop . . .”
Can interfere with therapeutic relationship and rapport.
Can lead to poor pt/family decisions
PERL cards have some examples of phrases to use and not use; how to deal with emotions from family.
(These are not posted on the website, but were tables taken from four Annals of Internal Medicine articles and one from The Oncologist:
Ann Intern Med
2001;135(3): J. Coulehan, F. Platt, et al.
2001;135(7): T. Quill, R. Arnold, F. Platt
1999;130(9): B. Lo, T. Quill, J. Tulsky
2002;136(9): L. Crawley, P. Marshall, et al
The Oncologist
2000;5: W. Baile, R. Buckman, et al.
The words we use can lead to a sense of abandonment, interfere with our therapeutic relationship with patients and family members and can contribute to poor decision-making poor decision-making.
If we mislead (often unintentionally) not surprising that poor decisions may be made. (Offering to continue futile therapy, i.e., mechanical ventilation to a dying patient, e.g.)
Facilitators should use examples or stories from their own experience to illustrate these points.
Example:
People know they want to be “not dead” if possible.
So if we offer mechanical ventilation to treat a dying patient’s shortness of breath with the following sentence: (paraphrased)-’We need to put you on a ventilator or you will die.’ We shouldn’t be surprised that they think that the ventilator will prevent this patient from dying. When we often know that we are likely only delaying the death and (often) ensuring an unpleasant and suffering course.
It is often hard for physicians and family members to know (see) the difference between gravely ill and dying.

3. Breaking Bad News
Bad News – Any info that may negatively affect a patient’s physical or mental health.
This is one definition.
There are times when what I think is “bad news” is not taken as bad news by a patient or family; and conversely, things that I don’t think are bad news are taken and reacted to as bad news by the patient or family.

4. S- P- I- K- E-S Protocol Getting started S ETTING
What does the patient know?
How much does the patient want to know?
Sharing the information
Responding to patient, family feelings
Planning and follow-up
S ETTING
P ERCEPTION
I NFORMATION
K NOWLEDGE
E MPATHY
S UMMARIZE / STRATEGIZE
The SPIKES protocol is commonly taught in medical school. If your small group indicates they are familiar and do not need a step-by-step review, the facilitator should ask for some examples of family meeting the students have seen; or simply move on so there is time to discuss handling difficult cases.
Step 1. Getting started
Plan what you will say
 Confirm medical facts
 Don’t delegate this to someone else
 Create a conducive environment
 Allot adequate time
 Prevent interruptions
 Determine who else the patient would like present at the meeting; who else do you want at the meeting?
Step 2.Perception
Establish what the patient already knows (or thinks)
 Assess ability to comprehend new bad news
 Reschedule if unprepared
Step 3.
Recognize, support various patient preferences
They may voluntarily decline to receive information
They may designate someone to communicate on his or her behalf
Step 3: How much does the patient want to know? (cont.)
 People handle information differently
Race, ethnicity, culture, religion, socioeconomic status, age and developmental level
 When the family says “don’t tell”
Legal obligation to obtain informed consent from the patient
Ask the family:
Why not tell? What are you afraid I will say? What are your previous experiences? Is there a personal, cultural, or religious context?
Talk to the patient and family together
Step 4. Present the needed information.
Step 5. Respond to emotion.
You may need to give permission for them to express emotion!
you can do this by the following statement(s):
“Many people are very angry when they hear this news”; then wait and allow the patient or family to respond.
if people respond with tears, we should allow them some time to cry and not stop there crying with either false reassurance, or forcing tissues on them too quickly.
Step 6. Summarize/strategize; this is the time in which you assure patient and family they will not be abandoned and you make sure common questions are answered
Take this time to review any additional information or tests that are still planned.
Assure everyone that you will treat or control symptoms, and make referrals as needed
Give contact information, set next appointment
Before leaving, assess:
safety of the patient
supports at home
Repeat news at future visits as needed
Adapted from Robert Buckman, Breaking Bad News

5. ELICIT BIG-PICTURE GOALS AND VALUES
What makes life worth living? Want to get up and face each day?
Is anything worse than death?
What do you think she’s hoping for?
If this is the last chapter of her life, is there something she needs to do or accomplish?
Another approach, when guiding patients, and/or families, through the decision of whether to use life-sustaining treatments or not, is to address the big picture goals and values of the patient.
Notice that this portion involves LISTENING even more than speaking!
Understanding the patient’s goals and previously stated wishes, often allows the physician to recommend more appropriate treatment interventions that are more in keeping with the patient’s stated goals, and avoiding treatments that are not in keeping with their goals and values.
For example, a patient who stated he would never want to be in a nursing home, may not want life-sustaining treatment such as mechanical ventilator, pressure support in the face of this or another life-threatening illness.
Another patient, may state, or have stated, that they would want all life-sustaining measures even if it meant they would need nursing home placement.

6. CLOSE THE MEETING Any contingency decisions?
Summarize and check for agreement
Arrange for follow-up
At the time one closes the meeting and does the summarized scene and strategizing (step six), it is good to review explicitly want steps will be taken by the medical team and by the family.
If you know the there is a need for a follow-up meeting then arranged that at this time if at all possible.

7. WHY THINGS GO BADLY What’s the problem?
When everything works, and everyone agrees, that is easy. The challenge is to recognize that things aren’t going it well, step back and consider how to improve the situation.

8. DDX OF CONFLICT Goold, Williams, Arnold JAMA 2000
Family does not understand
Denial (superficial resemblance)
Grief
Guilt
Secondary gain?
Family/physician values conflict
These are often the source of conflict.
Tincture of time will sometimes allow people to understand and be able to work through guilt and grief so that they can work with the medical team to identify a course of treatment.
An ethics consultation can help to identify and, at times resolve, a values conflict.

9. CONCLUDING THOUGHTS Families may remember you the rest of their lives
Emphasize goals, outcomes, values (from the patient’s perspective)
De-emphasize treatments and technologies
Breaking bad news and leading family meetings has a lasting impact on patients and families. Decisions based on values and goals, are more likely to be the “right” decision, rather then making the decision to use a ventilator or CPR made in the absence of value discussions.
The words we use, and the manner in which we behave, can make the difference in a patient or family making decisions that impact their quality of life and the assurance that they made the “right” decision.