Decision Making in Palliative

Care

Professor and Section Head, Palliative Medicine, University of ManitobaMedical Director, WRHA Adult and Pediatric Palliative Care

Mike Harlos MD, CCFP, FCFP

The presenter has no

conflicts of interest to

disclose

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 helath care options

• To explore an approach to health care decision-making

http://palliative.info

Case 1

• 35 yo woman with metastatic CA cervix

• ongoing bleeding, requiring 1-2 transfusions per week

• transferred to palliative care unit for comfort care after her health care team decided that no further transfusions would be given, as they were “futile”

Case 2

• 7 month old infant with severe anoxic brain injury due to balloon aspiration

• life-sustaining treatment in the PICU withdrawn, was being transferred ward for palliative care

• as he was being wheeled out of his ICU room in his bed, his father noticed that he no longer had an intravenous line

“Where is his IV line? How is he going to get fluids?”

Case 3

• 65 yo man with esophageal CA, extensive mets to liver, cachexia

• difficulty swallowing

• Asking about a feeding tube

Case 4• 75 yo woman with widely metastatic CA lung

• brought in near death to ED by ambulance

• unresponsive, mottled, resps congested and irregular, pulse rapid and barely palpable

• IV started, fluids and cefuroxime administered for presumed pneumonia

• 2 daughters… both realize mom is dying and do not want CPR, however: one wants all meds and fluids discontinued one wants possible pneumonia treated and hydration

provided… if this is not done, she will never speak to her sister again

Anatomy of Decision Making• Information is the foundation on which decisions are

made

Clinical information – facts, numbers; the “what”

Values / belief systems / ethical framework; the “who”• Patient / family• Health care team

• Goals are the focus of decisions – dialogue around health care decision (or any decision, for that matter) should be framed in terms of the hoped-for goals

• Communication is the means by which information is shared and discussion of goals takes place

Preemptive Decisions• 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: food/fluid intake 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?

• functional decline occurs• food/fluid intake decr.• oral medication route lost• symptoms develop:

dyspnea, congestion,delirium

• family will need support & information

Some Problems Are Easily Predictable

Preemptive Discussions

18

“You might be wondering…”Or

“At some point soon you will likely wonder about…”

• Food / fluid intake

• Meds or illness to blame for being weaker / tired / sleepy /dying?

Introducing the Topic

One of the biggest barriers to difficult conversations is how to start them

Health care professionals may avoid such conversations, not wanting to frighten the patient/family or lead them to think there is an ominous problem that they are not being open about

Discussions around goals of care can be introduced as an important and normal component of any relationship between patients and their health care team

Starting the Conversation – Sample Scripts 1

“I’d like to talk to you about how things are going with your condition, and about some of the treatments that we’re doing or might be available. It would be very helpful for us to know your understanding of how things are with your health, and to know what is important to you in your care… what your hopes and expectations are, and what you are concerned about. Can we talk about that now?”

(assuming the answer is “yes”)

“Many people who are living with an illness such as yours have thought about what they would want done if [fill in the scenario] were to happen, and how they would want their health care team to approach that. Have you thought about this for yourself?”

Patient/FamilyUnderstanding and

Expectations

Health Care Team’sAssessment and

Expectations

What

if…?

Starting the Conversation – Sample Scripts 2

“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?”

The Unbearable Choice

• Usually in substituted judgment scenarios

• “Misplaced” burden of decision• Eg:

– Person imminently dying from pneumonia complicating CA lung; unresponsive

– Family may be presented with option of trying to treat… which they are told will prolong suffering… or letting nature take its course, in which case he will soon die

ProlongSufferingProlong

SufferingLet

Die

Let

Die

Helping Family And Other Substitute Decision Makers

• Rather than asking family what they would want done for their loved one, ask what their loved one would want for themselves if they were able to say

• This off-loads family of a very difficult responsibility, by placing the ownership of the decision where it should be… with the patient.

• The family is the messenger of the patient’s wishes, through their intimate knowledge of him/her. They are merely conveying what they feel the patient would say rather than deciding about their care

“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?”

Example…

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 are asking for guidance about how we can ensure that we provide the kind of care that he would have wanted at this time.”

ComfortComfortComfortComfort MedicalMedicalMedicalMedical ResuscitationResuscitationResuscitationResuscitation

The three ACP levels are simply starting

points for conversations about goals of

care when a change occurs

Goal-Focused Approach To Decision Making

Regarding effectiveness in achieving its goals, there are 3 main categories of potential interventions:

1. Those that will work: Essentially certain to be effective in achieving intended physiological goals (as determined by the health care team) or experiential goals (as determined by the patient) goals, and consistent with standard of medical care

2. Those that won’t work: Virtually certain to be ineffective in achieving intended physiological goals (such as CPR in the context of relentless and progressive multisystem failure) or experiential goals (such as helping someone feel stronger, more energetic), or inconsistent with standard of medical care

3. Those that might work (or might not): Uncertainty about the potential to achieve physiological goals, or the hoped-for goals are not physiological/clinical but are experiential

Goal-Focused Approach To Decisions

Goals unachievable, 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 to a

setting/providers willing to pursue the intervention

Goals unachievable, 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 to a

setting/providers willing to pursue the intervention

Goals achievable and consistent with standard of

medical care

•Proceed if desired by patient or substitute decision maker

Goals achievable and consistent with standard of

medical care

•Proceed if desired by patient or substitute decision maker

Uncertainty RE: Outcome

Consider therapeutic trial, with:

1.clearly-defined target outcomes

2.agreed-upon time frame

3.plan of action if ineffective

Uncertainty RE: Outcome

Consider therapeutic trial, with:

1.clearly-defined target outcomes

2.agreed-upon time frame

3.plan of action if ineffective

Revisiting The Cases

Case 1: 75 yo woman with metastatic CA cervix, question about the role of transfusions

Case 2: 7 month old infant with severe anoxic brain injury, question about hydration

Case 3: 65 yo man with esophageal CA, wondering about feeding tube

Case 4: 75 yo woman with widely metastatic CA lung, conflict between daughters