Patient involvement:
contexts and contradictions
Christina Sinding
School of Social Work &
Department of Health, Aging and Society
Bioethics Interest Group Rounds
March 9, 2011
"I like to be an informed person but…" Negotiating
responsibility for treatment decisions in cancer care.
Social Science & Medicine (2010), 71, 1094-1101. Christina Sinding,
Pamela Hudak, Jennifer Wiernikowski, Jane Aronson, Pat Miller, Judy
Gould, Donna Fitzpatrick-Lewis
Of time and troubles: Patient involvement and the
production of health care disparities.
Health: An Interdisciplinary Journal for the Social Study of Health, Illness
and Medicine (under review 2010).
Christina Sinding, Pat Miller, Pamela Hudak, Sue Keller-Olaman,
Jonathan Sussman
Patient involvement: Contexts and contradictions.
Canadian Social Work Review (submitted 2010).
Christina Sinding, Jane Aronson, Patti McGillicuddy, Linda Learn,
Anne Rochon Ford
With thanks to the women
who took part in interviews with us,
about their experiences and knowledge of cancer care
I’m here to
talk about my
diagnosis
Illustrations by Lina Tirilis
Then…
I’m here to
talk about my
diagnosis
‘No one is going to tell me
how to do my surgery!’
‘You’re absolutely ridiculous!’
And now…
I’m here to
talk about my
diagnosis
Acceptable treatment
regimens are those using
cyclophosphamide,
methotrexate and 5fluorouracil (CMF) or
doxorubicin (Adriamycin)
and cyclophosphamide
(AC) or cyclophosphamide,
epirubicin and 5fluorouracil (CEF). In terms of
breast cancer outcomes, CMF
And AC are equivalent,
and CEF is superior to CMF.
CEF is associated with more
side effects than CMF. The
addition of taxanes to
anthracycline-containing
regimens remains under active
investigation.
What would you
like to do?
Provider-Patient Communication
…
Make it explicit that there are choices to be made and that the
patient should be involved in these choices.
…
Assure the person that there is enough time to consider the
treatment options, and offer to arrange a return visit for them
when they have made a decision.
“Obviously it’s my choice and I want it to be
my choice and even if they didn’t say it was
my choice it was my choice” (Robyn)
Statements of entitlement not always congruent with
 the experience of being positioned as decision-maker

how women actually responded
The chemo was another language… I would
have had to tell them to slow down, I
would have had to get them to write
everything out, I would have had to go do
research you know I mean it took me
months to be able to say aromatase
inhibitor (laugh). So so that’s the part
where I turned it over to [my
sister]…

Kim delegated decisions about chemo
to her sister, an oncology nurse
Well as I say I ... I didn’t really make the
decision because I’m aware enough you
know cancer clinics have been collecting
statistics for 50 some years and have been
compiling it together and these guys read it
so I’m going to go with them….

Robyn assigned the decision to her
oncologists, and the researchers behind them
When you have locally advanced cancer you
have three decisions to make: do you trust
your team? What are you going to do when
your hair falls out? And do you want
reconstruction or not? Other than that…
there are no decisions to be made.

Karen reframed the decision
He said, ‘well what do you want to do? Do you want
to go back up to the full dose and risk having
another episode or do you want to stick on the
15%, the reduced by 15%?’ And I remember
thinking, don’t ask me that, you decide. But
then I got crafty and I figured, and I figured
this out pretty quickly, just keep him talking for
about 2½ minutes and they’ll figure out what it is
they really want to do. So that’s what I did.
 Robyn – gets ‘crafty’
He said… ‘it is your choice. I will do what you
want me to do.’ And then I pushed him and I
said, ‘what would you do?’ And he didn’t
want to answer. And I said, ‘alright,
medically what is the better choice,
never mind, medically what’s the better
choice?’ And he said, ‘my opinion is the
more tissue I can remove the lower the risk.’
 Sheila – crafts a question
“The medical team seemed (to the woman)
strangely reluctant to express an opinion”
(p. 365)
◦ Ziebland, S., Evans, J., & McPherson, A. (2006). The choice is yours? How
women with ovarian cancer make sense of treatment choices. Patient Educ
Couns, 62(3), 361-367
Patients “tried to infer” a treatment
recommendation “from the order in which the
treatment options were presented” (p. 434)
◦ O’Brien, M., Whelan, T., Charles, C., Ellis, P., Gafni, A., Lovrics, P., et al.
(2008). Women's perceptions of their treatment decision-making about
breast cancer treatment. Patient Education and Counseling, 73(3), 431-436.
What (else) is going on?



Changes in treatment
Liability concerns?
Rise of evidence-based medicine
Mykhalovskiy, E., & Weir, L. (2004). The problem of evidence-based
medicine: directions for social science. Social Science & Medicine, 59(5),
1059-1069.

Wider social changes: restructuring of the state; withdrawal
from public provision; call to citizens to take responsibility for
futures, health, risks they face…
Peterson, A. (1996). Risk and the regulated self: the discourse of health promotion as
politics of uncertainty. Australian and New Zealand Journal of Sociology, 32, 44-57.
Clarke, J., Newman, J. E., Smith, N.,Vidler, E., & Westmarland, L. (2007). Creating CitizenConsumers: Changing Publics and Changing Public Services. London: Sage.
Kendall, E., & Rogers, A. (2007). Extinguishing the social?: state sponsored self-care policy
and the Chronic Disease Self-management Programme. Disability & Society, 22(2), 129
- 143.
Newman, J., & Vidler, E. (2006). Discriminating customers, responsible patients,
empowered users: consumerism and the modernisation of health care. Journal of
Social Policy, 35(02), 193-209.

That’s another thing where a patient needs to – because I get
this call on Monday… My appointment [for an ultrasound of
the suspicious area] was Friday. Meanwhile I’m sitting here
going, I can’t wait till Friday, like there’s no way. So first of all I
called them back and I said … ‘I’ll come in whenever you
want but it has to be before Friday.’ They said, ‘well the
doctor doesn’t read the results until Friday…’ So I said
alright fair enough. But meanwhile I still couldn’t like just sit
on it so I phoned my oncologist. . .

She had everything there in her file… she said, ‘I wouldn’t
worry if I were you.’ So I was able to… I mean when they
phoned me on the Monday I thought, ‘oh.’ But by the time
Friday rolled around it was pretty obvious that it wasn’t
anything too major.
[the oncologist] was going to arrange it with [the surgeon]
but by the time one communicates with the other, with
the other and then the other one you know, and I
thought well why not push it along… Nobody does it for
you...You have to… [Fran]
Excerpt from Managing Your Cancer Care: A self
advocacy guide for breast cancer patients
The Canadian cancer care system is increasingly complex.
Often, there is no single “case manager” or “patient advocate”
to help you to manage your care from diagnosis through
treatment and beyond. As a result, you may find that you must
advocate for yourself and take an active role in the
coordination of your care. This is what is referred to as selfadvocacy...
Self-advocacy means taking an active role in your treatment
to make sure you get the support and care you need. It’s
about asking questions and getting answers (p.5).
KNOWING YOUR RIGHTS: The Canadian Breast Cancer
Patient Charter encourages patients to seek the high quality
of care they deserve through a better understanding of their
individual rights. To get a copy of the Charter… (p. 15).
Excerpt from Managing Your Cancer Care: A self
advocacy guide for breast cancer patients
. . . Keeping copies of your health records in a binder can be useful when coordinating
your care.
Ask for copies of all your medical and pathology reports.
Keep a record of all the tests and appointments you have. This may prevent
duplication…
Include a list of all prescription medications, as well as any side effects you may have
had…
Call your doctor’s office for test results if they haven’t called you. Waiting can make
you feel very anxious. If the wait time is longer than you’ve been told it would be,
call the doctor’s office.
Your doctor and nurse need to know about new symptoms and changes in how you
feel. They won’t know unless you tell them. …
Find out who you can contact when you have questions that come up between
appointments….
Understand which side effects you should report right away and which ones can wait
until the next appointment.
Know who to contact and what you should do in case of an emergency…
Excerpt from Managing Your Cancer Care: A self
advocacy guide for breast cancer patients
The Canadian cancer care system is increasingly complex.
Often, there is no single “case manager” or “patient advocate”
to help you to manage your care from diagnosis through
treatment and beyond. As a result, you may find that you must
advocate for yourself and take an active role in the
coordination of your care. This is what is referred to as selfadvocacy...
Self-advocacy means taking an active role in your treatment
to make sure you get the support and care you need. It’s
about asking questions and getting answers (p.5).
KNOWING YOUR RIGHTS: The Canadian Breast Cancer
Patient Charter encourages patients to seek the high quality
of care they deserve through a better understanding of their
individual rights. To get a copy of the Charter… (p. 15).
Excerpt from Managing Your Cancer Care: A self
advocacy guide for breast cancer patients
The Canadian cancer care system is increasingly complex.
Often, there is no single “case manager” or “patient advocate”
to help you to manage your care from diagnosis through
treatment and beyond. As a result, you may find that you must
advocate for yourself and take an active role in the
coordination of your care. This is what is referred to as selfadvocacy...
Self-advocacy means taking an active role in your treatment
to make sure you get the support and care you need. It’s
about asking questions and getting answers (p.5).
KNOWING YOUR RIGHTS: The Canadian Breast Cancer
Patient Charter encourages patients to seek the high quality
of care they deserve through a better understanding of their
individual rights. To get a copy of the Charter… (p. 15).
Excerpt from Managing Your Cancer Care: A self
advocacy guide for breast cancer patients
The Canadian cancer care system is increasingly complex. Often,
there is no single “case manager” or “patient advocate” to help you
to manage your care from diagnosis through treatment and beyond.
As a result, you may find that you must advocate for yourself and
take an active role in the coordination of your care. This is what is
referred to as self-advocacy...
Self-advocacy means taking an active role in your treatment to make
sure you get the support and care you need. It’s about asking
questions and getting answers (p.5).
KNOWING YOUR RIGHTS: The Canadian Breast Cancer Patient
Charter encourages patients to seek the high quality of care they
deserve through a better understanding of their individual rights. To
get a copy of the Charter… (p. 15).
No counter narrative…
With these tips… “shaping the future” of
health care “by empowering patients”
(Ontario Hosptial Association, 2010).
OHA’s patient safety department
Aim: “the reduction, and mitigation of
unsafe acts within the healthcare system”
Contemporary discourses about service users typically
combine “an apparent increase in power (as partner, as
customer) with increasing responsibilities” (Barnes & Prior,
2009, p.5).
Barnes, M., & Prior, D. (2009). Subversive citizens: Power, agency and
resistance in public services (pp. 3-16). Bristol: The Policy Press.
Patients called to monitor – and intervene to
ensure – the co-ordination, quality and
safety of their health care
What does this all mean for equity… ?
Patient involvement in treatment decision making
Involvement in TDM is least welcomed by people who are
older, who have fewer years of formal education, lower
incomes, and lower status occupations.
Some research suggests that treatment decision practices
might contribute to cancer disparities.
“Treatments related to best outcomes are less likely to
be chosen by certain groups of women” (Polack et al
2007, p. 158). Ethnically diverse and disadvantaged
women, given greater input into decision making,
may choose less than ideal treatments.
Polacek, G. N., Ramos, M. C., & Ferrer, R. L. (2007). Breast cancer
disparities and decision-making among U.S. women. Patient
Education and Counseling, 65(2), 158-165.
What does this all mean for equity… ?
Patient involvement in co-ordination, quality, safety
Some participants appeared to realize the promise of
involved patienthood: better, faster, safer care through
their own actions
In achieving this promise, these participants drew on
professional training, medical and health care knowledge
(or social networks with this knowledge), experience
negotiating institutions, and material resources.
Consider the possibility that these discourses selectively
empower patients with greater social and material
resources...
Example of how resources matter…
There’s… way too many people that are needing tests than there are people to
give them… and you just hear stories about how things slip through the cracks.
And so you just don’t want to be one, I don’t want to be one of those people so,
and for the sake of a call... (Sheila)
I’m phoning at recess time, and I’ve got 15 minutes while someone is watching my
grade two class. And you can’t call me back… because I’ve got lunch duty… And
then they’re closed from 12 to 1, and my prep is whatever time and I’ll try to call
then… and J who was doing my recess would say, ‘I’ve got 5 minutes more before
my class comes in, go try again’… and then as doctors would start to phone me
back like I’d say, ‘oh I left a message with my doctor’s office to phone me’ with the
secretary and I’d say, ‘there’s two teachers sharing the room next door, can one of
you guys cover my class if I hear from the doctor’s office?’ kind of thing. And so I’d
go whipping down the hall… (Karen)
Mavis, Glenda: no phone for periods of time during diagnosis and treatment.
Examining ‘patient involvement’
We can ask some key questions…

What does it take from clients or patients, to be involved in the
ways the initiative encourages? Are the resources required for
involvement equally available to all patients?

What are the consequences for women, of their involvement?
Consider blame, culpability…

What (and whose) objectives does this patient involvement
initiative actually serve? Are we taking patient discomfort &
reluctance seriously? What do patients want & need that is not
included/ paid attention to?

What does this form of patient involvement say about our
vision for health, and care?