COMMUNICATION ISSUESCOMMUNICATION ISSUES

ININ

PALLIATIVE CAREPALLIATIVE CARE

“I think I just heard my pager

go off”

• Poor eye contact

• Body language - subtly discourages interaction

• Appears rushed

• Moves around a lot

Note Poor Communication Skills:Note Poor Communication Skills:

““HOW DO YOU TALK ABOUT....”HOW DO YOU TALK ABOUT....”

• current status of the illnesscurrent status of the illness

• hopes, expectations, fearshopes, expectations, fears

• anticipated course, progression, changesanticipated course, progression, changes

• advance directivesadvance directives

ISSUES THAT ARISE

• how am I doing?

• how long have I got?

• what will happen to me?

• why can’t this just end right now?

• multitude of concerns of loved ones

DISCUSSING TERMINAL ILLNESS WITH PATIENTS:BASIC APPROACH

1. Set the stage: sit down, minimize noise & other distractions

2. Explore “frame of reference”: what patient knows and wants to know; fears, misconceptions, preconceptions

3. Explore fears / concerns / worries, and validate them as legitimate

4. Careful titration of gentle but honest information• check out how patient is receiving and processing: question patient, watch body language

5. Be prepared to abandon your own agenda if it clashes with patient’s

Titrate information with gentle honesty

Check response:Observed & Expressed

The response of the patient determines the nature The response of the patient determines the nature & pace of the sharing of information& pace of the sharing of information

““Feedback Loop”Feedback Loop”

““How long have I got?”How long have I got?”

• make sure you’re talking about the same thingmake sure you’re talking about the same thing

““Do you mean how long do you have to live?”Do you mean how long do you have to live?”

• may be asking about:may be asking about:– discharge homedischarge home– how long until symptoms controlledhow long until symptoms controlled

DISCUSSING PROGNOSISDISCUSSING PROGNOSIS

• determine why the question is poseddetermine why the question is posed

““I can understand that you would want to talk about I can understand that you would want to talk about this. Is there a specific reason why you’re wondering this. Is there a specific reason why you’re wondering this now?”this now?”

– upcoming family eventupcoming family event– waiting for relative to arrivewaiting for relative to arrive

DISCUSSING PROGNOSISDISCUSSING PROGNOSIS

Determine patient’s “frame of reference”Determine patient’s “frame of reference”

What’s your understanding of how things are with your illness?What’s your understanding of how things are with your illness? How have you seen things going in the last month or so?How have you seen things going in the last month or so? Do you think about what that means for how things will go?Do you think about what that means for how things will go? Have you any ideas yourself about how long you might have?Have you any ideas yourself about how long you might have? How do you see things for yourself when you think about theHow do you see things for yourself when you think about the next few (days/weeks/months) ?next few (days/weeks/months) ?

DISCUSSING PROGNOSISDISCUSSING PROGNOSIS

DISCUSSING PROGNOSIS ctd.

“As you know, it’s difficult to be specific when discussing how long someone might have.

We can usually speak in terms of days-to-weeks,weeks-to-months, or months-to-years.

From how things seem now and in the last whileI believe we’re talking about a few weeks, or perhaps 1 to 3 months”

ADDRESSING UNREALISTIC EXPECTATIONSADDRESSING UNREALISTIC EXPECTATIONS

• “ “I’m going to beat this thing.”I’m going to beat this thing.”• “ “I’m so much looking forward to....” I’m so much looking forward to....”

““That’s something really nice to hope for. I’m concerned That’s something really nice to hope for. I’m concerned that things are changing with your strength because of that things are changing with your strength because of your illness, and this may not be possible. Why don’t we your illness, and this may not be possible. Why don’t we set some short-term goals to aim for as well, and see set some short-term goals to aim for as well, and see how things go?”how things go?”

““I WANT YOU TO GIVE ME SOMETHING JUST GET I WANT YOU TO GIVE ME SOMETHING JUST GET THIS OVER WITH RIGHT NOW.”THIS OVER WITH RIGHT NOW.”

UNHELPFUL RESPONSE:UNHELPFUL RESPONSE:

““I can’t do that - it’s against the law”I can’t do that - it’s against the law”

A MORE HELPFUL APPROACHA MORE HELPFUL APPROACH::

• pausepause• sit down sit down • touchtouch

““It must be so difficult for you to have things reach the It must be so difficult for you to have things reach the point that you’d rather not be alive.point that you’d rather not be alive.Why do you feel this way?”Why do you feel this way?”

DISCUSSING DESIRE FOR EARLY DEATHDISCUSSING DESIRE FOR EARLY DEATH

Explore concerns that have led to the desire for death:Explore concerns that have led to the desire for death:

• loss of control over life in generalloss of control over life in general• being a burdenbeing a burden• anticipation of loss of symptom controlanticipation of loss of symptom control

– severe painsevere pain– choking to deathchoking to death

• losing mental facultieslosing mental faculties• loss of dignity loss of dignity

DISCUSSING DESIRE FOR EARLY DEATHDISCUSSING DESIRE FOR EARLY DEATH

ADDRESSING DESIRE FOR EARLY DEATHADDRESSING DESIRE FOR EARLY DEATH

Give control back to patientGive control back to patient• information, knowledge about illness - expected changesinformation, knowledge about illness - expected changes• education about medications, opioid useeducation about medications, opioid use• Advance DirectivesAdvance Directives

Involve support networksInvolve support networks• spiritual support: Church, Pastoral Carespiritual support: Church, Pastoral Care• emotional support: Counseling, support groupsemotional support: Counseling, support groups• cultural supportcultural support

Is there a treatable depression? Is there a treatable depression? Is there a significant risk of suicide?Is there a significant risk of suicide?

““Many people think about what they might Many people think about what they might experience as things change, and they become experience as things change, and they become closer to dying. closer to dying.

Have you thought about this regarding yourself? Have you thought about this regarding yourself?

Do you want me to talk about what changes are Do you want me to talk about what changes are likely to happen?”likely to happen?”

TALKING ABOUT DYING

First, let’s talk about what you should First, let’s talk about what you should not not expect.expect.

You should You should notnot expect: expect:– pain that can’t be controlled.pain that can’t be controlled.– breathing troubles that can’t be controlled.breathing troubles that can’t be controlled.– “ “going crazy” or “losing your mind”going crazy” or “losing your mind”

If any of those problems come up, I will make If any of those problems come up, I will make sure that you’re comfortable and calm, even if sure that you’re comfortable and calm, even if it means that with the medications that we use it means that with the medications that we use you’ll be sleeping most of the time, or possibly you’ll be sleeping most of the time, or possibly all of the time.all of the time.

Do you understand that?Do you understand that?Is that approach OK with you?Is that approach OK with you?

You’ll find that your energy will be less, as You’ll find that your energy will be less, as you’ve likely noticed in the last while.you’ve likely noticed in the last while.

You’ll want to spend more of the day You’ll want to spend more of the day resting, and there will be a point where you’ll resting, and there will be a point where you’ll be resting (sleeping) most or all of the day.be resting (sleeping) most or all of the day.

Gradually your body systems will shut down, and at Gradually your body systems will shut down, and at the end your heart will stop while you are sleeping.the end your heart will stop while you are sleeping.

No dramatic crisis of pain, breathing, agitation, or No dramatic crisis of pain, breathing, agitation, or confusion will occur -confusion will occur -

we won’t let that happenwe won’t let that happen..

OBTAINING SUBSTITUTED JUDGMENTOBTAINING SUBSTITUTED JUDGMENT

You are seeking their thoughts on You are seeking their thoughts on

what the patient would want, not what what the patient would want, not what

they feel is “the right thing to do”.they feel is “the right thing to do”.

““If he could come to the bedside as healthy as If he could come to the bedside as healthy as he was a year ago, and look at the situation for he was a year ago, and look at the situation for himself now, what would he tell us to do?”himself now, what would he tell us to do?”

OrOr

““If you had in your pocket a note from him telling If you had in your pocket a note from him telling you that to do under these circumstances, what you that to do under these circumstances, what would it say?”would it say?”

PHRASING REQUEST: SUBSTITUTED JUDGMENTPHRASING REQUEST: SUBSTITUTED JUDGMENT

Usual response is for comfort Usual response is for comfort

care only; emphasize then that care only; emphasize then that

we have no right to do otherwise.we have no right to do otherwise.

Family / Friends Wanting to InterveneFamily / Friends Wanting to InterveneWith Food and / or FluidsWith Food and / or Fluids

• distinguish between prolonging living and prolonging dyingdistinguish between prolonging living and prolonging dying• parenteral fluids not needed for comfortparenteral fluids not needed for comfort• pushing calories in terminal phase does not improvepushing calories in terminal phase does not improve function or outcomefunction or outcome• “ “We can’t just let him die”We can’t just let him die” ““Not letting him die” implies that you can “make him Not letting him die” implies that you can “make him

live”, which is not the case. The living vs. dying live”, which is not the case. The living vs. dying outcome is dictated by the disease, not by what you or outcome is dictated by the disease, not by what you or the family decides to do.the family decides to do.

Patient’s Lifetime

Time that death would have occurred without intervention

Extending the final days in terminal illness:Prolonging life or prolonging the dying phase?

Consider the rationale of trying to prolong life by adding time to the period of dying

““You wouldn’t let a dog suffer this way”You wouldn’t let a dog suffer this way”

• Try to help them see whose suffering they are describing... often it’s their own, not the patient’s

• That family’s suffering is still very relevant… but should be addressed in ways other that contemplating speeding up the death of their loved one

• ““He was fine a week ago...he’s changed so fast!”He was fine a week ago...he’s changed so fast!”

• “ “She was fine until I brought her in...”She was fine until I brought her in...”

did things did things reallyreally change suddenly? change suddenly? changes changes hadhad begun, necessitating admission begun, necessitating admission diminishing reserves accelerated decline thediminishing reserves accelerated decline the

PERCEIVED SUDDEN CHANGEPERCEIVED SUDDEN CHANGE

Steady decline Accelerated deterioration begins,medications changed

Rapid decline due to illness progression with diminished reserves.

Medications questionedor blamed

Which Came First....The Med Changes or the Decline?

Day 1Day 1 FinalFinalDay 3Day 3Day 2Day 2

The Perception of the “Sudden Change”

Melting ice = diminishing reserves

When reserves are depleted, the change seems sudden and unforeseen.However, the changes had been happening.

““What about ......?”What about ......?”

an IVan IVa feeding tubea feeding tubea transfusiona transfusionantibioticsantibioticssurgerysurgeryphysiotherapyphysiotherapyresuscitationresuscitationetc..etc..

This is Palliative Care...we don’t do that here!

• Zero percent chanceZero percent chance of achieving a of achieving a physiologicphysiologic goal goal

• Issues of :Issues of : benefit/burden (eg. surgery, chemotherapy)benefit/burden (eg. surgery, chemotherapy) resource allocation / distributive justice (eg. dialysis)resource allocation / distributive justice (eg. dialysis) assumed patient wishes (eg. CPR) assumed patient wishes (eg. CPR)

are too often presented inappropriately as issues of are too often presented inappropriately as issues of “ “futility”, possibly justifying unilateral withholding of futility”, possibly justifying unilateral withholding of treatmenttreatment

Beware the Argument of “Medical Futility”Beware the Argument of “Medical Futility”

“FUTILE”:< 1% HoldingHolding

lotterylotteryticket:ticket:

1 chance in1 chance in 14,000,000 14,000,000

Aspect Assessment Interpretation Comments

What

We

See

Positive Effects

physiologicObjective:

• lab values• vital signs

decisionslargelyclinicalSide

Effects

What

The

Patient

Feels

Benefits quality of life/functional

Subjective &value-laden• feel better• reassured

requirepatient’s

inputBurdens

WHAT ARE THE WHAT ARE THE GOALSGOALS OF THE INTERVENTION? OF THE INTERVENTION?

• Quality of life:Quality of life: Symptom reliefSymptom reliefGeneral well-beingGeneral well-beingEnergy levelEnergy levelSelf-imageSelf-image

• Physiologic – Physiologic – Eg. improve hemoglobinEg. improve hemoglobin

• Prolong lifeProlong life

• Feel like “something is being done”Feel like “something is being done”

SUMMARYSUMMARY

• Respond with respect, gentle honestyRespond with respect, gentle honesty

• Explore patient’s knowledge, fears, hopesExplore patient’s knowledge, fears, hopes

• Address fears with truthful reassuranceAddress fears with truthful reassurance

• Empower with information, controlEmpower with information, control

HOPE