COMMUNICATION ISSUES IN PALLIATIVE CARE

“I think I just heard my pager go off” Note Poor Communication Skills: “I think I just heard my pager go off” Poor eye contact Body language - subtly discourages interaction Appears rushed Moves around a lot

“HOW DO YOU TALK ABOUT....” current status of the illness hopes, expectations, fears anticipated course, progression, changes advance 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 “Feedback Loop” Check response: Observed & Expressed The response of the patient determines the nature & pace of the sharing of information

DISCUSSING PROGNOSIS “How long have I got?” make sure you’re talking about the same thing “Do you mean how long do you have to live?” may be asking about: discharge home how long until symptoms controlled

DISCUSSING PROGNOSIS determine why the question is posed “I can understand that you would want to talk about this. Is there a specific reason why you’re wondering this now?” upcoming family event waiting for relative to arrive

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

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 while I believe we’re talking about a few weeks, or perhaps 1 to 3 months”

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

“I WANT YOU TO GIVE ME SOMETHING JUST GET THIS OVER WITH RIGHT NOW.” UNHELPFUL RESPONSE: “I can’t do that - it’s against the law”

DISCUSSING DESIRE FOR EARLY DEATH A MORE HELPFUL APPROACH: pause sit down touch “It must be so difficult for you to have things reach the point that you’d rather not be alive. Why do you feel this way?”

DISCUSSING DESIRE FOR EARLY DEATH Explore concerns that have led to the desire for death: loss of control over life in general being a burden anticipation of loss of symptom control severe pain choking to death losing mental faculties loss of dignity

ADDRESSING DESIRE FOR EARLY DEATH Give control back to patient information, knowledge about illness - expected changes education about medications, opioid use Advance Directives Involve support networks spiritual support: Church, Pastoral Care emotional support: Counseling, support groups cultural support Is there a treatable depression? Is there a significant risk of suicide?

TALKING ABOUT DYING “Many people think about what they might experience as things change, and they become closer to dying. Have you thought about this regarding yourself? Do you want me to talk about what changes are likely to happen?”

First, let’s talk about what you should not expect. pain that can’t be controlled. breathing troubles that can’t be controlled. “going crazy” or “losing your mind”

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

You’ll find that your energy will be less, as you’ve likely noticed in the last while. You’ll want to spend more of the day resting, and there will be a point where you’ll be resting (sleeping) most or all of the day.

Gradually your body systems will shut down, and at the end your heart will stop while you are sleeping. No dramatic crisis of pain, breathing, agitation, or confusion will occur - we won’t let that happen.

OBTAINING SUBSTITUTED JUDGMENT You are seeking their thoughts on what the patient would want, not what they feel is “the right thing to do”.

PHRASING REQUEST: SUBSTITUTED JUDGMENT “If he could come to the bedside as healthy as he was a year ago, and look at the situation for himself now, what would he tell us to do?” Or “If you had in your pocket a note from him telling you that to do under these circumstances, what would it say?”

Usual response is for comfort care only; emphasize then that we have no right to do otherwise.

Family / Friends Wanting to Intervene With Food and / or Fluids distinguish between prolonging living and prolonging dying parenteral fluids not needed for comfort pushing calories in terminal phase does not improve function or outcome “We can’t just let him die” “Not letting him die” implies that you can “make him live”, which is not the case. The living vs. dying outcome is dictated by the disease, not by what you or the family decides to do.

Extending the final days in terminal illness: Time that death would have occurred without intervention Patient’s Lifetime 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” 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

PERCEIVED SUDDEN CHANGE “He was fine a week ago...he’s changed so fast!” “She was fine until I brought her in...” did things really change suddenly? changes had begun, necessitating admission diminishing reserves accelerated decline the

Which Came First.... The Med Changes or the Decline? Steady decline Accelerated deterioration begins, medications changed Rapid decline due to illness progression with diminished reserves. Medications questioned or blamed

The Perception of the “Sudden Change” When reserves are depleted, the change seems sudden and unforeseen. However, the changes had been happening. Melting ice = diminishing reserves Day 1 Day 2 Day 3 Final

“What about ......?” an IV a feeding tube a transfusion antibiotics surgery physiotherapy resuscitation etc.. “What about ......?”

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

Beware the Argument of “Medical Futility” Zero percent chance of achieving a physiologic goal Issues of : benefit/burden (eg. surgery, chemotherapy) resource allocation / distributive justice (eg. dialysis) assumed patient wishes (eg. CPR) are too often presented inappropriately as issues of “futility”, possibly justifying unilateral withholding of treatment

“FUTILE”: < 1% Holding lottery ticket: 1 chance in 14,000,000

Positive Effects physiologic Objective: lab values vital signs Aspect Assessment Interpretation Comments What We See Positive Effects physiologic Objective: lab values vital signs decisions largely clinical Side Effects The Patient Feels Benefits quality of life/ functional Subjective & value-laden feel better reassured require patient’s input Burdens

WHAT ARE THE GOALS OF THE INTERVENTION? Quality of life: Symptom relief General well-being Energy level Self-image Physiologic – Eg. improve hemoglobin Prolong life Feel like “something is being done”

SUMMARY Respond with respect, gentle honesty Explore patient’s knowledge, fears, hopes Address fears with truthful reassurance Empower with information, control

HOPE