The importance of a truthful

conversation

PROFESSOR D ROBIN TAYLOR

CONSULTANT PHYSICIAN, NHS LANARKSHIRE

HONORARY CLINICAL FELLOW, UNIVERSITY OF EDINBURGH

“If we are not serious

about facts and what’s

true and what’s not, if we

can’t discriminate

between serious

arguments and

propaganda, then we

have problems”

Barack Obama, Berlin, November 18, 2016

Anticipatory Care Plan, Hospital ACP, DNACPR

Anticipatory Care Plan, Hospital ACP, DNACPR

Prognostic conversations, supported

decision-making

Anticipatory Care Plan, Hospital ACP, DNACPR

Prognostic conversations, supported

decision-making

Assessment of prognosis / the diagnosis of dying

Treatment goals: the appropriateness of intention

to cure or supportive / palliative care

Anticipatory Care Plan, Hospital ACP, DNACPR

Prognostic conversations,

supported decision-making

Assessment of prognosis / the diagnosis of dying

Treatment goals: the appropriateness of intention

to cure or supportive / palliative care

Truthfulness

Truth: the definition

“Truth is that which is in accordance with

fact or reality” (Oxford English Dictionary)

Truth …….

Goes hand in hand with trust …

the opposite is alienation and isolation

Is the gateway to good decision making …

the opposite is foolishness and confusion

Is something about which we are often

ambivalent!

Obstacles in the way of good

end-of-life care

The death taboo: societal, professional, personal

The pre-eminence of the curative medical model

Prognostic uncertainty

Communication skills inadequacy

Reluctance to engage in prognostic

conversations, anticipatory care and crisis

management planning

Discontinuity of care

DEATH DENYING

and DEATH

DEFYING CULTURE

ADDICTION to

the CURATIVE

MEDICAL MODEL

DEATH DENYING

and DEATH

DEFYING CULTURE

Obstacles in the way of good

end-of-life care

The death taboo: societal, professional, personal

The pre-eminence of the curative medical model

Prognostic uncertainty

Communication skills inadequacy

Reluctance to engage in prognostic

conversations, anticipatory care and crisis

management planning

Discontinuity of care

Prognosis: definition

- an opinion, based on medical assessment and

judgment, of the likely course of a medical

condition.

- a forecast of the likely outcome of a situation.

NOT

- the same as diagnosis (breaking bad news)

- “how long does the patient have to live?”

Questions at a time of acute medical crisis

Is the patient on an end-of life trajectory?

Is the patient receiving maximum medical therapy with no

scope for further stabilisation or improvement?

Is the present acute event reversible even if death is

inevitable?

Will intervention(s) prolong life or contribute to a bad

death?

Has the overall prognosis been recognised and

acknowledged and is it informing decision making ?

What are the patient’s wishes with regard to risks / benefits

of further treatment (assuming capacity) in the light of the

outlook?

Prognostic conversations

Discussing prognosis is an ethical responsibility for

all clinicians, even more so when the patient has a

life-limiting condition.

Discussing prognosis honestly opens the gateway

to more appropriate goals of care and treatment,

including how a future crisis should be handled.

Secrets and Lies: 1996. Mike Leigh

Organ system failure: end-of-life trajectory

Fu

nc

tio

n

Death

High

Low

Frequent admissions,

self-care

becomes difficult

2-5 years, but death often

seems

“unexpected”

Time

Occasions of

uncertainty

Accelerated frailty phase

“Medicine is a science of

uncertainty and an art of

probability.”

William Osler

Uncertainty

Organ system failure: end-of-life trajectory

Fu

nc

tio

n

Death

High

Low

Frequent admissions,

self-care

becomes difficult

2-5 years, but death often

seems

“unexpected”

Time

Occasions of

increased

complexity

Accelerated frailty phase

Complexity

Gloria Steinem

“The truth will set you free,

but first it will piss you off”

Hopefulness, hopelessness and

despair

Hope ∝ Survival

The therapeutic illusion

“Failure to disclose information honestly to

patients might be an attempt to protect

their own emotional survival as much as to

help protect the patient”

Fallowfield L, Jenkins V.

Communicating sad, bad, and difficult news in medicine.

Lancet 363(9405):312-319, 2004.

Hopefulness, hopelessness and

despair

Hope ∝ Survival

Hopefulness, hopelessness and

despair

Hope ∝ Survival

Hope ∝ Optimism

Hope

“Hope is not the conviction that something will turn

out well, but the certainty that something makes

sense regardless of how it turns out”

Vaclav Havel

Playwright and President of the Czech Republic, 1993-2003

Hopefulness, hopelessness and despair

- Disclosure: the potential for emotional

distress

- Avoidant behaviour: the hope-eroding

impact of isolation

- Denial: short term gain but long term loss

Giving honest information to patients with

advanced cancer maintains hope

N = 27 with advanced cancer facing 2nd, 3rd or 4th chemotherapy cycle

Verbal information, backed up by written information, that included the

explicit words: “there is no chance of cure”

Smith et al., Oncology 2010; 24: 521-5

Advance care planning does not

adversely affect hope or anxiety among

patients with advanced cancer

N = 200: Patients with advanced cancer (estimated survival

2 years or less)

Intervention: Making your wishes known ACP. Randomised controls.

Outcomes: Hopefulness – Herth Hope Index

Hopelessness – Beck Hopelessness Scale

Anxiety – State Trait Anxiety Inventory

Result: No reduction in hopefulness or increase in hopelessness

or anxiety in intervention group

Conclusion: Engaging in ACP increases knowledge without

diminishing hope

Green et al. J. Pain and Symptom Management 2015: 49: 1088-96

Associations between end-of-life discussions

and medical care near death.

Wright A.A. et al. JAMA 2008; 300(14): 1665-73.

Acceptance, preferences and planning

End of life discussion

Adjusted

O.R.

P-

value Total

(N, (%))

YES

(123)

NO

(209)

Accepts illness is

terminal

125 (37.7) 65 (52.9) 60 (28.7) 2.19 <.001

Wants to know life

expectancy

242 (72.9) 103 (83.7) 139 (66.5) 2.40 <.001

Values comfort over

life-extension

245 (73.8) 105 (85.4) 140 (70.0) 2.63 <.001

Against death in ICU 118 (35.5) 60 (48.8) 58 (27.8) 2.13 <.001

Completed DNR 134 (41.1) 75 (63.0) 59 (28.5) 3.12 <.001

Completed will, WPOA 181 (55.2) 86 (71.7) 95 (46.1) 1.96 .003

The impact of advance care planning on

end of life care in elderly patients:

randomised controlled trial

Hospital initiated ACP

56 / 125 randomised patients died within 6 months

25/29, 86% with ACP had their end-of-life wishes respected

compared with 8/27, 30% among controls (P<0.001)

Family members of patients who died had significantly less

stress (P<0.001), anxiety (P=0.02), and depression (P=0.002)

than those of the control patients.

Detering et al., BMJ 2010; 340: 1345

Prognostic conversations

1. Consent to discuss

“Are you the sort of person who is comfortable

talking about your future?”

NB cultural differences

NB the dangers of surrendered autonomy and

collusion

Prognostic conversations

1. Consent to discuss

2. Reflection on trends

Prognostic conversations:

starting questions

“So, John, what are your thoughts about the

way things have been going lately?”

“Are you worrying about what might lie

ahead?”

“I think we can get you well again this time, but

have you thought much about what should be

done further down the track?”

“Tell me a little bit about what you are

frightened of”

“Margaret, we need to chat a bit about what

might happen after your operation”?

Prognostic conversations

1. Consent to discuss

2. Reflection on trends

3. Reflection on expectations

Treatment effectiveness or futility, current and

future, especially in relation to potential deterioration or crises.

Today I had a patient in for flu vaccination and I opened a

conversation worded in the way you suggested: "so how do

you think your chest is doing compared to last year? Is there

anything you would like to talk about?"

This opened a host of questions and discussion about end of

life care. I was able to introduce the Making Choices

ACP, and we went through it together. We both found it very

useful.

I really felt a lot more confident in talking to her about her

choices. It helped me make a difference today and we don’t

often get to feel that way.

Clip from “A Good Death”

The bottom lines

Compassionate truth-telling is an ethical responsibility

Truthfulness is permission-giving

Truthfulness leads to realistic clinical decision-making

and anticipatory planning

Truthfulness allows for timely letting go rather than

desperate clinging on

These are the key to improved

quality of care including

providing for “a good death”

Secrets and Lies: 1996. Mike Leigh

Thank you

See VIDEO:

NES: DISCUSSING DYING

“A GOOD DEATH” (directed by Paul Trotman)

The diagnosis of dying

Progressive pathological process(es),

malignant or non-malignant, affecting one

or more major organs whose course is

unlikely to be influenced by maximal

medical therapy AND

Progressively declining quality of life such

that impact of disease (on ADLs) is relatively

unaffected by medical interventions, but is

amenable to palliative treatments

Death is envisaged as inevitable within

hours, days, weeks or 6-12 months

Hospital rapid response team and patients

with life-limiting illness

351 patients –139 with a life-limiting illness

456 rapid response team consultations

Patients with a life-limiting illness had a significantly higher

mortality rate (41.7% vs 13.2%), were older (72.6 vs 63.5

years), more likely to come from a residential aged-care

facility (29.5% vs 4.1%).

Rapid response team consultations resulted in a change to

palliative goals of care in 28.5% of patients

Sulisto et al., Palliative Medicine 2015; 29(4): 302–309