Presented at the International Symposium of Health Care Communication, 13th Februrary 2018, ANU Institute for Communication in Health Care.

1. THE PROGNOSIS COLLISION
Scientific versus psychosocial values in prognosis communication
Assistant Professor Kasia Bail
University of Canberra
ANU Institute for Communication in Health Care (ICH)
International Symposium For Communication in Health Care
13th February 2018

2. TODAY’S PRESENTATION
• Brief overview of literature review, research design
• Presentation of key findings
• Discussion with implications for practice and teaching
International Symposium For Communication in Health Care, 13th February 2018
Dr Kasia Bail

3. LITERATURE REVIEW
Prognosis
• Difficulty defining, estimating and communicating
• Dilemmas, role discrepancy, burnout, retention issues
Patient dissatisfaction
• Information needs, understanding, decision making
Staff dissatisfaction
International Symposium For Communication in Health Care, 13th February 2018
Dr Kasia Bail

4. SO WHAT?
WHAT DOES THIS MEAN FOR MODERN HEALTHCARE?
• Suitable alignment of treatment choices (risks/benefits)
• Shared decision making (patient/medical team)
• Complexity of the multidisciplinary team
- Particularly in acute settings where key prognosis changes occur/are identified
• Development in the concept of health (not just absence of disease)
• Anticipation, planning (life, family, side effects, future)
• Suitability of resource use
• Patient rights in healthcare:
- Access, safety, respect, communication, participation, privacy, comment
How is prognosis communicated
between clinicians in an acute care setting?
International Symposium For Communication in Health Care, 13th February
Dr Kasia Bail

5. • Case Series:
- 3 patients
• Interviews with 21 clinicians (7 for each patient)
- nurses, doctors, and allied health
• Patient clinical notes
- of the 3 patients
• Discourse and thematic analysis
• Triangulation of cases, participants and researchers
International Symposium For Communication in Health Care, 13th February 2018
Dr Kasia Bail
RESEARCH DESIGN
• Purposive sampling – opportunities for intensive study,
Stoke 2003
• Case series:
- Commonalities and specifics can be identified,
drawn from ‘those informants through whom the
case can be known – Stoke 2003
- Paradigmatic – highlight more general
characteristics of the society in question – Flyvbjerg
2006
- The ‘force of the example’ – Flyvbjerg 2006
• Qualitative research:
- As ‘insider’: textual and contextual familiarity
- Quality and relevance of data collected and analysis

6. Triangulation
Interview Post-Script
Case Series: Model

7. SELECTION CRITERIA
Patients
• Admitted to inpatient haematology ward in 3
month period in 2006
• Over age 18
• Diagnosis of haematological malignancy
- Leukaemia, lymphoma, myeloma and related
blood disorders
• Complicated prognosis situation
- Patient comprehension, clinicians speculation,
differences in options, changes circumstances,
differences in family members, difference in
current management, staff distress
Staff
• Responsible for the consented patient
• Willing and available to participate
• Ethical approval gained from health organisation
• NB – researcher was known to staff as a RN
International Symposium For Communication in Health Care, 13th February 2018
Dr Kasia Bail

8. RESULTS
Data collection
• 7 patient consents, resulting in 3 suitable cases
• 21 clinician interviews, total 410 minutes, mean 20mins in length
• 11 nurses, 8 doctors, 2 allied health
• 86 pages of patient notes
Cases (pseudonyms):
• Pam
• Joyce
• Fiona
International Symposium For Communication in Health Care, 13th February 2018
Dr Kasia Bail

9. FINDINGS:
PROGNOSTIC
CONSTIPATION

10. FINDINGS
1. Prognosis conjures death
• The term ‘prognosis’ was associated with ‘poor’ prognosis, and
consequently death and dying, which were considered negative
International Symposium For Communication in Health Care, 13th February 2018
Dr Kasia Bail
3. Clinicians’ preparedness to communicate prognosis
• Clinicians have expectations about patient care and outcomes, particularly in relation to age, hope, and fighting spirit
• These ‘expected outcomes’ become a projected discourse for what is acceptable for patients to follow
• Risks clinicians to only being able to provide care on the known ‘pathway’
• Perceived ‘need to know’ basis
• Lack of shared values
• Insufficient time
• Lack of documentation
2. Clinician expectations and ‘The Pathway’

11. 1. PROGNOSIS CONJURES DEATH
You can have the chemotherapy or trials rather than talk about the prognosis (D1, Burgundy)
If Fiona fails to get a remission, she may end up having to go to palliative care (D3, Grey)
What do you think the patient’s prognosis
would actually be? (Researcher)
I think she’s… well…. Well….. Can I say that?
(N3 Plum)

12. 2. ‘THE PATHWAY’ OF STAFF EXPECTATIONS
Well she actually doesn’t really make treatment decisions, really (laughing) it’s either
chemo or no chemo! I don’t even think that was really an option for her really. (D1-Blue)
Unless that person’s got a particular issue about themselves and they bring it up, then yeah we sit down and
talk more in depth about it about what their issues are. But if they’re traveling down the expected path, then it
doesn’t get discussed …..really. (N2-Pastel)
Because we never discuss ‘do you want chemotherapy’. Everyone is just sort of on the same sort of plane I
guess. We knew she was going to receive chemotherapy, and she was happy to go along with that. (D1-Blue)
Can you talk around how she makes her treatment decisions? She….she accepts the treatment as prescribed
essentially. (D2-Green)
Being a patient…a haematology patient… myeloma is a full time occupation…there’s no doubt about that
(D1- Red)
Somewhere along that journey (chemotherapy treatment) you’ve got to find time for the other things. (D1-Red)

13. EXAMPLE 1. THE EXPECTED PATHWAY OF PATIENT HOPES
Implications of the Pathway:
- it is unrealistic to hope for no side effects to chemo
- but acceptable to hope for a 10% chance of cure
She (Pam) hopes to gain back her strength, because prior to
coming in she can actually walk around but….because of the
chemo….it make her weak again…So she hopes to regain her
strength all the time, while having the chemotherapy, which
is quite unrealistic sometimes.
She has these unrealistic hopes at times…she will ask that
she won’t get any side effects from the chemotherapy and
she questions things like that.
She also hope that she can go home for Christmas, which we
don’t know if she’s able to do that, because it depends on her
condition down the road.
And she hopes….she has a lot of hope. She hopes she won’t
get any infection….like the febrile neutropaenia again. She
hopes her voice to return. She hopes for that.
I guess every cancer patient hopes for the best….for their
cancer to be in remission. (D1- Khaki)

14. 3. CLINICIANS’ PREPAREDNESS TO DISCUSS PROGNOSIS
- Multiple questions from nurse researcher required for clinicians to discuss prognosis
- Lack of language by clinicians to discuss prognosis
- Difficulty in identifying prognosis related information
- Multiple reasons cited to avoid prognosis communication
- Lack of knowledge (esp of patients own understanding)
- Insufficient multidisciplinary communication
- Types of avoidance
- Well/unwell/recovering/relapsing/curing
- Not my role
- Not appropriate at ‘this stage’
- Not necessary for ‘this patient’

15. a. Role delineations (need to know basis)
The things you’ve been telling me about - have you had those conversations with other nurses or doctors?
Not the nurses. But the registrar I talk to yeah. But not with the nurses…No.
And is there a reason for that?
Maybe for the privacy of the patient... I do not discuss with the nurses….because there’s no benefit. If nurses ask ‘so what is the cause of
that’, I explain…..but otherwise I do not. I do not need to. (D1-Burgendy).
As for the Occupational therapist etc. I do not know and I do not care and I do not think it’s important….I do not see them as key people who
are going to be involved in Pam’s care, who Pam aligns with as part of her journey…(D2-Red).
Yeah I think you do need to know because sometimes you can put your foot in it, and have to back pedal quite quickly. (N5-Yellow).
I do not feel like….I’m contributing holistically. So were they to say – ‘oh you know, she’s got this chance, and this and this and this happens
with this type of chemo’{chemotherapy} then I can form a picture, and it can be all more clear, and easier to look after the patient.
{Otherwise} it’s a bit harder to look after the patient, to know where to go, or what to say, what to do. (N1-Lavendar).
I do not know her prognosis. No one discussed it with me, and I couldn’t find it in the notes… So I had no idea. Being new on the ward, I have
no idea what to expect – NHL {non-Hodgkin Lymphoma} – what does that mean? (N1-Lavendar).
Even {statistics}, which are such a painless impersonal way of diagnosing someone in a note…..are very rarely written. (N2-Teal).

16. b. Differences in psychosocial or scientific approaches to
prognosis
There were two implicit value systems regarding prognosis:
- Scientific (predominantly medical)
- The dominant scientific expectation was that if statistics had been discussed then prognosis communication
had occurred.
- Psychosocial (predominantly nursing and allied health).
- Psychosocial considerations were more concerned with how the patient was using their understanding of
scientific information to make plans for the future.
There was a lack of shared perspective of the inter-relationship of scientific prognostic indicators with
psychosocial health and well-being.

17. Example 2 – Pyschosocial distractions
Pam’s treatment (bone marrow transplant) was delayed by two weeks so
that she could attend her niece’s wedding, for whom she had made the
bridal dress.
The wedding was described by doctors as ‘one of these other things’ (D1-
Pam).
So her next thing now is that she’s booked herself in for a holiday in
Queensland in March which is about the time we’d be looking at doing the
second transplant (laughing) When we’re talking to her about these
prognostic matters she’ll often bring up these things….and various other
things in the family and things like that. Which is fine…it probably helps
her… …but I think it’s also a means of…alleviating the tension and anxiety
that comes with actually…(unfinished sentence). (D1-Red)
So delaying the treatment was negotiated, to the discomfort of the
clinician, but
acknowledged for the best for Pam personally (but perhaps not for her
disease).

18. Pam’s doing well, just complaining of nausea.
But at the moment she’s well you know. (Doctor3-Brown)
Same day, same patient:
Its now day 11, Pam’s been lying in bed with a syringe driver for
pain, unable to keep anything down, as miserable as all get out.
And the day before yesterday she actually had a white cell count
and neutrophils that had come up, and no one had told her.
..These [current doctors], they’d look at you in amazement if you
said ‘she’s laughing because she’s had toast this morning, because
she was told her neut count was up’.
They’d be ‘so what?’ It wouldn’t interest them, they’re too clinical.
Some of [the doctors] are only interested in the obs and vomits.
(Nurse2-Pink)
Improving scientific
prognosis (bone
marrow recovery)
Psychosocial impact =
feeling well enough to
eat after days of
anorexia and nausea
Pain, nausea, anorexia, distress
Valuing patient understanding of a scientific aspect of prognosis
Communication
Example 3 – lack of shared values

19. RELIEVING THE
PROGNOSITIC
CONSTIPATION

20. FRAMING PROGNOSIS TO THE DISEASE OR THE PERSON
International Symposium For Communication in Health Care, 13th February 2018
Dr Kasia Bail

21. DIFFERENT FRAMING DEVICES TO DISCUSS PROGNOSIS
International Symposium For Communication in Health Care, 13th February 2018
Dr Kasia Bail

22. SUGGESTED TEACHING ALTERNATIVES
International Symposium For Communication in Health Care, 13th February 2018
Dr Kasia Bail

23. DEFINITIONS
Scientific Prognosis
a. the expected course of treatment
b. possible other trials which could be utilised to treat disease progression
c. statistics available related to disease and treatment
d. statistics available related to likely length of remission
e. the estimated timeline before death for that disease or particular patient
International Symposium For Communication in Health Care, 13th February 2018
Dr Kasia Bail
Psychosocial Prognosis
f. likely effects of the treatment and disease on the individual patients’ life now
and in the future
g. planning for the patient’s future, unrelated to the disease or treatment,
such as weddings and holidays

24. Current advances
- Advanced care planning
- Palliative care access
- Patient coaching
- Individualised health care
Yet to develop
- Shared risk taking
- Access bias
- Unconscious
- Location-based

26. INCREASING PSYCHOSOCIAL VALUE IN PROGNOSIS
Challenges
Related to Nurses
• Between patients and normative pathways
• Nurses feel powerless related to prognosis
• Nurses generally work within the Pathway
Prognosis
• Prognosis is invisible
• Everybody waits for somebody else to raise
prognosis
• Prognosis should be individual, not a generic
pathway
• Prognosis should be a regular discussion, not a
singular concept
• Recognising ‘prognosis-type’ conversations
Communication
• Developing a prognosis language
• Valuing communication and documentation
• Accepting ambiguity, change and uncertainty
Opportunities
Shifting social expectations
• Recognising decisions are made psychosocially
• Recognise scientific vs psychosocial values in
prognosis
• Increasing value/measurement of patient
satisfaction
Choice
• Recognising choices, and rights
• Haematology and palliative care
intersection/access
• Prognosis communication
should not equal ‘end of life’
International Symposium For Communication in Health Care, 13th February 2018
Dr Kasia Bail
“This is not just a once off – this is an ongoing conversation”

27. 27
Work environments for communication
Hospital Complexity
People 65+ are12% population, but 30%
admissions and 48% of bed days
Half of people aged 65-74 and 70% of 85+
have 5+ comorbidities
Decreased acute beds per population
Bed occupancy 90%+
LOS decreased, increased churn
Simple surgery goes to private or day Lack of
senior staff 75% of the week
Increased workforce casualisation
Dilution of experienced nurses
Nurses’ complex roles
Complete 72.3 tasks per hour
Mean task length 55 seconds Duration
of 40% of nurses work is less than 10
secs
Multitask 34% of the time
Consider a different patient every 6
minutes
Interrupted every 6 minutes
(colleagues, patients) Interrupted every
hour by work system failures
55–98% leave at least one task undone
(aka missed, rationed)

29. Care reported as missed/omitted/rationed, by nurses of patients, and related to four costed complications.
Patient needs ^ Nursing care tasks Percentages reported
omitted
References Associated with complications
UTI Pneum Del PU
Protect integument
Skin care 7-63% 1,2,3,4 * *
Mouthcare/oral hygiene 18-82% 1,2,3,4,6,7 * *
Patient bathing 11-63% 2,3,6 * * * *
Eliminate waste Toileting assistance 11-70% 2,3,5,6 * * *
Eat and drink
Facilitate hydration and nutrition 15-76% 2,3 * * * *
Move and maintain postures
Ambulation 29-84% 1,2,6,5 * * * *
Turning 16-82% 2,5 *
Effective pain medication 10-83% 1,2,7 * * * *
Avoid dangers
Glucose monitoring 26% 2 * * *
Vital signs 17-38% 1,2,7 * * * *
Answer call light 9-66% 1,2,5,6 * * *
Adequate hand washing 13-30% 2,5 * * * *
Communicate
Documentation of care 15-47% 1,3,4,5,7,8 * * * *
Teach patients and family 9-80% 1,2,3,4,5,7,8 * * * *
Comfort/talk with patients and family 27-66% 1,2,3,4,5,7,8 * * * *
UTI = urinary tract infection Pneum = Pneumonia Del = Delirium PU = Pressure ulcer
^ Henderson 1955.
Table 2 References. 1. Duffield 2007, 2. Kalisch 2009, 3. Al-Kandari 2009, 4. Lucero 2010, 5. Schubert 2013, 6. Kalisch 2006, 7. Ausserhofer 2014, 8. Ball 2014
Translating dementia research into practice ©UNSW as represented by the DCRC-ABC (2011)

30. THE PROGNOSIS COLLISIONScientific versus psychosocial values in prognosis communication
ANU Institute for Communication in Health Care (ICH)
International Symposium For Communication in Health Care
13th February 2018
Kasia.bail@canberra.edu.au