Discussing Goals of Care
a) Prognostic Disclosure
SPIKES
S: Setting
Protocol/Examples
-
P: Perception
-
Clarify goals in your mind/formulate prognostic estimate
Prepare yourself emotionally
Obtain all relevant medical information
Ask patient who they would like to be present
Prepare physical environment (quiet, enough seating,
tissues)
Limit interruptions
Assess or reassess what the patient understands about his/her
disease or prognosis.
Best accomplished with open-ended questions.
“What is your understanding of your current health situation?
“What is the current state of your cancer?”
“What is your biggest concern right now?”
I: Invitation/Information
Ask the patient what kind of information they would like to receive.
“How much would you like to know?”
“What is the most important information for you to have now?”
“When talking about prognosis, some patients want to know as many
details as possible, and some patients don’t want to know anything
(but give us permission to talk to their family). Some patients fall
somewhere in the middle, wanting more ‘big picture’ information,
but no details. Where to you think you fall on the spectrum?” or
“What kind of patient can you identify with?”
K: Knowledge
- Provide clear, unambiguous information while respecting how
much patient wants to know.
- Acknowledge limitations of prognostic estimates.
- Estimate prognosis using ranges (ex. “days to weeks,” “weeks to
months,” “months”)
“Every patient is different, but in most patients with your condition,
prognosis may be on the order of weeks to months.”
E: Emotion/ Empathy
-Acknowledge and explore responses and emotions.
- Allow time to answer questions
NURSE acronym can be a useful tool in responding to emotions
N: Name [“I can see that you’re understandably sad, tell me
about how you’re feeling.”]
U: Understand [“Although I cannot completely know how you
must be feeling right now, I do understand that this is really hard.”]
R: Respect [“I think you’ve done an amazing job managing your
illness while working and taking care of your family.”]S: Support
[“I am here for you and your family”]
E: Explore [“Tell me more about how you’re feeling.”]
S: Summarize/Strategize
b.
-
Summarize and check for patient understanding
Only after assessing patient understanding can you proceed
with goal-setting and plan
Establishing Patient-Centered Goals
At this point, you have essentially discussed a limited life expectancy or prognosis with the
patient. The next step is to elicit specific goals from the patient, which is essential to developing
a plan of care. The following are examples of how to start the next part of the conversation:
“I/we have discussed your current condition and that time may be short. With that in mind, what
is important to you in the time that is left?”
“What do you expect/ hope for in the future?”
c.
Recommending a Plan of Care based on Patient Goals
Once the goals are established, review current and future treatments and discuss which ones will
help meet or not meet the patient’s goals. As a general rule, any treatment that will not help
meet the goals should be discontinued or not started. Depending on the disease or condition,
issues that are usually discussed at this point can include:
-
Current/future treatments or procedures– antibiotics, blood products, chemotherapy, tests,
labs
Monitoring in the hospital – telemetry/pulse ox
Future hospitalizations, ICU admissions
Artificial hydration/nutrition
Resuscitation orders/ Code status
Potential of stopping certain medications, dialysis, deactivating AICD function
Disposition options – home hospice referral, nursing home, home needs
Managing Conflict at the End of Life: Common Pitfalls and Practical Solutions
Pitfall #1: Poor communication techniques when discussing goals of care
Solutions:
-
-
Instead of asking “what do you want us to do?” ask what the patient would have wanted
in this situation. This takes much of the burden off of the family and returns focus to the
patient and honoring his or her wishes.
Make sure information is clear and unambiguous. Speak in layman’s terms. If the
patient is dying, say “dying.”
Make a recommendation based on your knowledge and experience
Pitfall #2: Not respecting communication preferences of patient/family
Solutions:
-
-
Always ask the patient how much they want to know about their illness and how they like
to make decisions
Be a good listener. You can pick up on a patient or family’s communication preferences
just by listening and observing. Do they speak slowly or quickly? Loud and expressive
or soft and introspective? Does their vocabulary indicate their level of education? Do
they prefer to talk about details or prefer more of a “big picture approach? When you
match their preferences with your pace, tone, and vocabulary, the patient or family will
be more at ease and difficult conversations often go more smoothly.
Use good judgment regarding timing and pace of information presented. Some
patient/families prefer to hear smaller bits if information at a time, or make step-wise
decisions. For example, if a family seems overwhelmed after you’ve explained the
patient’s prognosis, stop the meeting and let the family have some time to digest the
information and ask questions. Reconvene the following day to discuss goals of care.
Pushing forward to the decision-making portion of the meeting for a family who is not
ready will almost always lead to conflict.
Pitfall #3: Not acknowledging emotion or caregiver stress
Solutions:
-
If you do not think there is an understanding problem, think emotion first when conflict
arises.
-
Verbalize empathy for the caregiver [“I can only imagine how difficult this is for you and
your family.”]
Explore stresses and identify support services [“How are you coping?”]
If you sense guilt/anger/fear as the underlying emotion, name it and ask how you can
help. Bringing these feelings out in the open is usually a good first step in understanding
and supporting the patient or family (remember the NURSE acronym in Table 1).
[Examples: “Tell me what you fear the most.” “ You seem angry/sad/frustrated; can you
tell me how you’re feeling?” “I see that you are crying. What is upsetting you the
most?” “You mentioned that you feel guilty. I just want you to know that bringing your
mother to the hospital any sooner would not have made a difference in the outcome.”]
Pitfall #4: Ignoring family dynamics
Solutions:
- Understand and acknowledge the stress the surrogate decision-maker may have, especially if
some family disagrees. With their permission, spend time talking to the family and answering
questions. Remember that the decision-maker will have to live with the family and the decision
long after the patient dies.
- Remain neutral. Do not take sides or ally yourself with a person or side of the family. Your job
is to facilitate the discussion and keep the focus on the patient and their wishes.
- Inquire about the patient’s role in the family and how that has changed with the illness; ask
about how the family typically makes decisions. [Ex. “In talking about these decisions, it would
help me to understand mother’s relationship to all of you. Did you get along? Did she prefer to
make decisions for herself, or did she rely on the family to come to a consensus?”
- If the discussion starts to unravel or fighting occurs, try to refocus the conversation on the
patient. [Ex. “I can see that you disagree on a number of issues, but I’d like to see if we can set
those aside right now and focus on your father.” ]
Pitfall #5: Unintentionally fostering an environment of distrust
Solutions:
-
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When conflict does arise, keep a cool head and do not take disagreements personally.
Do not make disagreements turn into who is right and who is wrong. Find some areas of
consensus and build from there.
Make sure all specialists and other staff are all on the same page. When families hear
different things from different doctors, confusion and distrust will result from your poor
communication with colleagues.
Do not appear to abandon the patient or family. Often, when conflict arises, physicians
avoid the patient/family instead of dealing with the conflict in a professional way. Any
sense that you are abandoning the patient will only lead to more family conflict. [Ex.
“While we don’t agree on X, I want you to know that we will continue to take excellent
care of your mother. Please let me know if I can do anything for her or your family.”]