1. Communication and Decision Making in Palliative Care
Mike Harlos MD, CCFP, FCFP
Professor and Section Head, Palliative Medicine, University of Manitoba
Medical Director, WRHA Adult and Pediatric Palliative Care

2. The presenter has no conflicts of interest to disclose

3. Objectives
To consider the roles that the patients, families, and the health care team have in decision- making
To consider the role of effective communication in reviewing health care options
To explore an approach to health care decision- making

6. “Ripple Effect” Of A Patient’s Death
Involved
Health Care
Team
Friends/
Community
Patient
Family

9. Silence Is Not Golden
Don’t assume that the absence of question reflects an absence of concerns
Upon becoming aware of a life-limiting Dx, it would be very unusual not to wonder:
“How long do I have?”
“How will I die”
Waiting for such questions to be posed may result in missed opportunities to address concerns; consider exploring preemptively

10. Setting The Stage In person Sitting down Minimize distractions
Family / friend possibly present
Seek permission prior to addressing difficult topics – including from others present, who may not have anticipated the discussion
If patient unresponsive, suggest having the discussion outside of the room rather than talking about him in the same room (relates to the “can he hear us?” question

11. Connecting
A foundational component of effective communication is to connect / engage with that person… i.e. try to understand what their experience might be
If you were in their position, how might you react or behave?
What might you be hoping for? Concerned about?
This does not mean you try to take on that person's suffering as your own
Must remain mindful of what you need to take ownership of (symptom control, effective communication and support), vs. what you cannot (the sadness, the unfairness, the very fact that this person is dying)

12. Titrating Information
Titrating Opioids
Titrating Information
“Look Up Recommended Dose”:
Check with health care team, review chart to see what patient has been told and understands
Check with patient/family what they understand
Look Up Recommended Dose
Start conservatively, usually with lower end of recommended range unless severity of distress dictates otherwise
Start Conservatively:
“Sometimes people in these situations wonder about…”
“I’m wondering what made you ask this today?”
Observe/assess response, titrate accordingly
Observe/assess response, titrate accordingly

13. Be Clear
“The single biggest problem in communication is the illusion that it has taken place.”
George Bernard Shaw
people often speak “around” difficult topics – make sure everyone is clear about what is being discussed
messages need to be clear, though not brutally blunt.
you can start with a “vague and gentle”, paced approach – however you may need to be increasingly direct
intuitive approach to how direct you need to be

14. Examples Gently Working Towards A Clear Message
What you want the family to understand
A gentle, but vague message – not quite enough
A better way – an increasingly direct message that conveys the message
Your Mom is likely to die within 48 hrs
“She is changing quickly, and things are getting close”
“She is changing quickly, and we believe things are getting close. Judging by what we’re seeing, it seems likely that your Mom will die within the next couple of days”
Your Mom has an irreversible end-of-life delirium, and must remain sedated until dying
“There’s been a big change, and your Mom is much more confused. We can give her something to settle her.” [the problem here is that families may expect that this is temporary]
“She has become much more confused, and is changing quickly. We believe that she will only live another day or two. We can give her something to settle her, but she must remain sedated until she dies from her underlying illness, as we can’t fix the reasons for her worsening confusion.”

16. “Don’t Tell Him He’s Dying…”
Sometimes families will want to protect a loved one from knowing that they are dying
Complex - don’t simply respond with “It’s their right to know”
Explore reasons / concerns – the “micro-culture” of the family
Rather than a “right to know”, people have the right to accept or decline information; they may indeed want to defer to family
Ultimately, may need to check with patient:
“Some people want to know everything they can about their illness, such as results, prognosis, what to expect. Others don’t want to know very much at all, perhaps having their family more involved. How involved would you like to be regarding information and decisions about your illness?” 16 16

17. Responding To Difficult Questions
Acknowledge/Validate and Normalize
“That’s a very good question, and one that we should talk about. Many people in these circumstances wonder about that…”
Is there a reason this has come up?
“I’m wondering if something has come up that prompted you to ask this?”
Gently explore their thoughts/understanding
“It would help me to have a feel for what your understanding is of what is happening, and what might be expected”
“Sometimes when people ask questions such as this, they have an idea in their mind about what the answer might be. Is that the case for you?”
Respond, if possible and appropriate
If you feel unable to provide a satisfactory reply, then be honest about that and indicate how you will help them explore that

18. Prognosticating
difficult – no studies or data can take into consideration all of the specific considerations for a given situation of advanced illness
some circumstances are fairly consistent – e.g. complete absence of fluid intake (survival usually a few days or up to two weeks)
the most helpful predictor as end of life nears is momentum of change – i.e. the illness trajectory; how quickly the person is declining

19. DISCUSSING PROGNOSIS “How long have I got?”
Confirm what is being asked – often question is vague
Acknowledge / validate / normalize
Check if there’s a reason that this is has come up now
Explore “frame of reference” (understanding of illness, what they are aware of being told)
It would be helpful if they could describe how the last month or so has been for them (“momentum of decline”)
How would they answer that question themselves?
Answer the question

20. For example…
“First, you need to know that we’re not very good at judging how much time someone might have... however we can provide an estimate.
We can usually speak in terms of ranges, such as months-to-years, or weeks-to-months. From what I understand of your condition, and I believe you’re aware of, it won’t be years. This brings the time frame into the weeks-to-months range.
From what we’ve seen in the way things are changing, I’m feeling that it might be as short as a couple of weeks, or perhaps up to a month or two”

21. Talking About Dying
health care professionals are familiar with helping people understand, anticipate, and prepare for the impact of illness, including difficult discussions about tests, treatments, procedures
arguably our most health challenge is facing dying
uncommon for health care providers to explore concerns about the dying experience
not trained in such discussions
not “fluent’ in the language of such conversations

22. For example…
“Many people think about what they might experience as things change, and they become closer to dying (or ‘closer to the end of their illness’).
Have you thought about this regarding yourself?
Do you want me to talk about what changes are likely to happen?”

23. if they have experienced challenging pain or dyspnea, assure them that the health care team will not let those issues get out of hand
and make sure you are prepared to do so
they will experience what they are already familiar with – diminishing energy, resting/sleeping more
in the final days they will usually not be awake or aware, and their systems will gradually shut down

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

25. Anticipating Predictable Issues
The clinical course at end of a progressive illness tends to be predictable... some issues are “predictably unpredictable” (such as when death will occur)
Many concerns can be readily anticipated
Preemptively address communications issues:
oral intake – food/fluids, medications
sleeping too much
are medications causing the decline?
how do we know he/she is comfortable?
can he/she hear us?
don’t want to miss being there at time of death
how long can this go on? what will things look like?

26. How Can I Start The Conversation Proactively?
With difficult conversations, the hardest part is starting them; once they get going they tend to take their own direction.

27. Potential Ways To Start Conversations
“You might be wondering why your Mom is…
more sleepy, spending more time in bed
weaker, seeming to have less energy
not eating or drinking very much
etc…
We’ve noticed that too, and thought it would be good to talk about these changes, and about what your thoughts and concerns are”
Other potential ways to start…
“Many families in this situation wonder about…”
“Sometimes when things start to change, families have concerns about…”

28. Patient/Family Understanding and Expectations Health Care Team’s
Sometimes it seems that the health care team and patients/families are in two separate rooms – the patient/family in the “don’t get it” or “won’t accept it” room and the health care team in the “we know what’s coming” room
What
if…?
Patient/Family
Understanding and
Expectations
Health Care Team’s
Assessment and
Expectations
Common ground– the scary “what-if?...” territory

29. “I know it’s been a difficult time recently, with a lot happening
“I know it’s been a difficult time recently, with a lot happening. I realize you’re hoping that what’s being done will turn this around, and things will start to improve… we’re hoping for the same thing, and doing everything we can to make that happen. Many people in such situations find that although they are hoping for a good outcome, at times their mind wanders to some scary ‘what-if’ thoughts, such as what if the treatments don’t have the effect that we hoped? Is this something you’ve experienced? Can we talk about that now?”

30. Displacing the Decision Burden
“If he could come to the bedside as healthy as he was a month 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?”
Family and other substitute decision makers can find it very burdensome to be asked what they would like done for their loved one. By re-phrasing such questions such that the family is asked how the patient would guide care if able to do so, the burden of such decisions is redirected back to the patient; the family is acting as a messenger of the patient’s wishes. Often families will indicate that the patient would want comfort focused care only.
This approach to off-loading the family of the direct responsibility for difficult health care choices can be very helpful. 30

31. Life and Death Decisions?
when asked about common end-of-life choices, families may feel as though they are being asked to decide whether their loved one lives or dies
It may help to remind them that the underlying illness itself is not survivable… no decision can change that…
“I know that you’re being asked to make some very difficult choices about care, and it must feel that you’re having to make life-and-death decisions. You must remember that this is not a survivable condition, and none of the choices that you make can change that outcome.
We know that his life is on a path towards dying… we are asking for guidance to help us choose the smoothest path, and one that reflects an approach consistent with what he would tell us to do.”
Many of the choices presented to families in the context of end-of-life circumstances can result in them feeling as though they are deciding whether or not there loved one lives or dies. It can be helpful to reaffirm that the underlying condition is not survivable, and that none of the choices that they make can change that… they are being asked for input that will help make sure that the care provided is consistent with how their loved one would have guided it, while ensuring that comfort is addressed.
Such scenarios can sometimes be described as the illness being a play whose script has been written and which cannot be changed… we are the stage hands whose role is to ensure that it unfolds with as much comfort and dignity for the patient as possible. 31

33. The CPR Issue
Simplistically, there are two main circumstances under which the heart stops:
a primary cardiac problem – e.g. ischemic event, arrhythmia
everything else is in such a mess that the heart simply can’t keep going – e.g. multisystem failure in advanced cancer; sepsis; progressive respiratory compromise; acute stroke. etc
CPR was developed to attempt restoration of cardiac function in the 1st of the above situations
In the 2nd of the above situations, unless you can reverse the underlying non-cardiac problems that resulted in cardiac arrest, CPR cannot work and should not be offered as an option
Rather, it can be acknowledged that while CPR is something that they may have heard about, it cannot work when the reasons that the heart has stopped can’t be fixed. Consequently, it won’t be attempted.

34. Goal-Focused Approach To Decisions
What are the goals of what is being considered?
Whose goals are they?
How and when will success in achieving those goals be assessed?
Things that work
Things that don’t work
Things that might work
Goals achievable and consistent with standard of medical care
Proceed if desired by patient or substitute decision maker
Goals not achievable, or inconsistent with standard of medical care
Discuss; explain that the intervention will not be offered or attempted.
If needed, provide a process for conflict resolution:
Mediated discussion
2nd medical opinion
Ethics consultation
Transfer of care
Uncertainty RE: Outcome
Consider therapeutic trial, with:
clearly-defined target outcomes
agreed-upon time frame
plan of action if ineffective
Interventions whose goals are clearly achievable and consistent with an accepted standard of medical care will generally be pursued if desired by the patient or substitute decision maker.
Interventions whose goals cannot possibly be achieved (such as CPR in the context of multisystem failure, where the heart ultimately stops beating only because of the overwhelming nature of the patient’s overall condition), or which do not meet an accepted standard of medical care (such as highly toxic unproven therapies) should not be attempted, and the reasons for this explained to the patient and family. If needed, a process for conflict resolution can be offered such as mediated discussion, 2nd medical opinions, and ethics consultation.
There is often uncertainty about whether the goals of an intervention can possibly be achieved. This is particularly the case when the hoped-for outcomes are subjective and experiential, such as whether tube feeding will result in improved energy and well-being in a patient with advanced esophageal CA and obstructive symptoms, or whether transfusing a patient with moderate anemia in the terminal phase of leukemia will improve energy and dyspnea. In such circumstances, it is reasonable to undertake a trial of the intervention, to see if it has the hoped-for effects. In such therapeutic trials, it is important to have the three following components:
Clearly-defined target outcomes, and means to assess them
An agreed-upon time frame during which to assess the effectiveness
A plan of action in the event that the intervention is not effective.
For example, in a patient with advanced metastatic esophageal CA and obstructive symptoms, it may be difficult to know how much of the weakness and functional decline is due to the overall effect of the illness vs. the nutritional compromise caused by the obstructive symptoms. In such situations, there may be a decision to undertake a trial of tube feeding for two weeks, with the target outcomes being improved energy, well-being, and functional status. Note that some of these outcomes will require the patient’s assessment, and to some there can be objective assessment of functional status. If the treatment is not effective, consideration may be given to withdrawing the feeding tube if that is the consensus decided upon prior to the trial. 34

35. Whose role is it to discuss ACP/Goals of Care?

36. “Planning for Care In Advance”
2 Formal Processes
Advance Care Planning
Consensus-based process
Patient/family/SDM* and Health Care Team
WRHA Policy – not a provincial initiative; no related legislation
Can be done if patient not able to participate
cognitive impairment
children
* SDM = Substitute Decision Maker
Health Care Directive
document outlining care expectations
supported by provincial legislation
16+ yrs, competent
can name proxy
can be made on any piece of paper
helps inform the ACP process, but not required for ACP

37. Resuscitation Medical Comfort
The three ACP levels are simply starting points for conversations about goals of care when a change occurs
Comfort
Medical
Resuscitation 37

38. Helping Families At The Bedside
physical changes – skin colour; breathing patterns
time alone with patient
can they hear us?
how do you know they’re comfortable?
missed the death