With thanks to the women who took part in interviews with us,

1. Patient involvement: contexts and contradictionsChristina SindingSchool of Social Work & Department of Health, Aging and SocietyBioethics Interest Group RoundsMarch 9, 2011

3. "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-LewisOf 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 SussmanPatient 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

4. I’m here to talk about my diagnosis Illustrations by LinaTirilis

5. Then… ‘No one is going to tell me how to do my surgery!’ ‘You’re absolutely ridiculous!’ I’m here to talk about my diagnosis

6. And now… Acceptable treatment regimens are those using cyclophosphamide, methotrexate and 5-fluorouracil (CMF) or doxorubicin (Adriamycin) and cyclophosphamide (AC) or cyclophosphamide, epirubicin and 5- fluorouracil (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? I’m here to talk about my diagnosis

7. 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.

8. “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

9. 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 delegateddecisions about chemo to her sister, an oncology nurse

10. 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

11. 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

12. 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’

13. 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

14. “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 EducCouns, 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.

15. 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 Citizen-Consumers: 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.

16. 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.

17. [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]

19. 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).

20. 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…

21. 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).

22. 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).

23. 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…

25. 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”

26. 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

27. 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.

28. 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...

29. 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.

30. 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?