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 By the end this presentation, participants will:
Realize that effective communication involves connection – one person to another
Know that many – if not most – communication issues in palliative care arise predictably and can be approached proactively
Realize that commonly encountered communication issues can be approached with a guiding framework
Appreciate that how care options (and non-options) are discussed profoundly impacts care decisions and decision-maker burden

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

8. Connecting You’re a person, your patient is a person
you almost certainly have thoughts/worries/fears about death and dying, as do they
you almost certainly have experienced loss, as they now are
This is your foundational qualification for discussing death and dying with others; your “admission ticket” to the conversation; your credentials for having a role
Your profession provides an added layer of technical information and skill, but without connecting as a person you cannot effectively provide support to a patient facing death and their family

9. If you were in their position, how might you react or behave
If you were in their position, how might you react or behave? What might you be hoping for? Concerned about?
What is their understanding of what is happening?
How has their experience of the illness and its treatments impacted them and their family?
What are their concerns, expectations, priorities?
This does not mean you try to take on that person's suffering as your own, or can truly understand their burdens
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)

10. Predictable Challenges As Death Nears In Progressive Terminal Illness
Functional decline – 100%
Compromised oral intake (food, fluids, meds) –100%
Families concerned about this – pretty much 100%
Congestion: reported as high as 92%
Dyspnea: 80% + as death nears
Delirium: 80% +
When these issues arise at end-of-life, things haven’t “gone wrong”… they have gone as they are inclined to

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

12. Starting Conversations Anticipate Concerns – Acknowledge, Normalize, Validate
Seek permission – not everyone in the room may be ready for frank discussion of death and dying
“You might be wondering why your Mom is (more sleepy; weaker; not eating/drinking) – we’ve noticed that too, and thought it would be good to talk about these changes…”
“Many families in such situations wonder about…
“Sometimes when things start to change, families have concerns about…”

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 titrating gently with truthful information that is always truthful
may need to be increasingly direct
intuitive approach to pace and directness

14. 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

15. “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?”

17. “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”
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?” 17 17

18. 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

19. 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

20. 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. 20

21. Life and Death Decisions?
Families may feel as though they are being asked to decide whether their loved one lives or dies – i.e. to choose life/death
It may help to remind them that the underlying illness itself is not survivable – no decision they make 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. 21

22. The Temptation of Treatability
In general, people do not die of the underlying life- limiting condition, but from its complications – pneumonia; sepsis; bleeding; organ failure; etc.
Families may say “We know he is going to die from his cancer, but we can’t just let him die from pneumonia – people don’t die from pneumonia these days”
You can find yourself being drawn by the “temptation of treatability” into a course of micromanaging the dying process that would have otherwise unfolded naturally, predictably, and usually calmly
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. 22

23. 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. 23

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

25. “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

26. Resuscitation Medical Comfort
The three ACP levels are simply starting points for conversations about goals of care when a change occurs
Comfort
Medical
Resuscitation 26