Providing Person-Centred Cancer Care: A LEARNING KIT FOR VOLUNTEERS

1. Providing Person-Centred Cancer Care:A LEARNING KIT FOR VOLUNTEERS HANDOUTS Canadian Partnership Against Cancer Cancer Journey Action Group and Public Health Agency of Canada April, 2009

2. Scenario 1: “When I was offered lumpectomy or mastectomy I elected mastectomy given the higher costs of being away from my family. [Afterward] there was no one locally available to remove tubes/bandages/stitches/drains.Once rural women are back home, they are out of the system. There’s no information in small towns.Libraries are not well stocked or current. A common misunderstanding about rural life is the assumed connection among people.Just because I live in a rural area, does not mean I am close to my neighbours. I don’t want them to know about me, and that I have breast cancer.” Excerpts compiled from report, Perspectives of Rural Women with Breast Cancer. Canadian Breast Cancer Network & Canadian Breast Cancer Foundation Community Research Initiative.

3. Scenario 2: “I have gone from the body of an active 18 year old doing pretty much whatever I wanted, to a much weaker and more fragile one. [I had a] seemingly never ending list of complications ranging from routine fevers to pancreatitis, which caused severe pain attacks and further complications which I am still dealing with. This may have been the most trying period mentally as well, because it seemed like I got a never ending stream of bad news. I did not really want to make my issues public, especially at first... I find that I have to make an effort to will myself to go out and be with my friends. [Cancer] has forced me to sit back and take a look at life and what it means, who I am and where I am going... as well as seeing the value of just living day to day, for the moment.” [Young man, diagnosed with Leukemia] Excerpts from survivor profile on “Realtime Cancer,” Young Adult Cancer Canada web site: http://www.youngadultcancer.ca

4. From “Lower-Income Women with Breast Cancer,” by Judy Gould, Canadian Woman Studies, 24(1). Scenario 3: “. . . the transportation thing . . . That is a problem cause there’s days I don’t have the money . . . One week I had a bone scan one day, the next day I had some other tests, then I had another test the third day and chemo . . . I [would] phone and say I’m sorry but, it’s not like I don’t want to come but . . . I was only getting $500 [a month] at the time [from the provincial income security program] . . . I go the [the cancer treatment centre] it’s $10 there, $10 back. If I go three times a week there’s $60, four times $60 is $240.” [Woman in her late 40s, living on her own]

5. Activity 5: Scenarios Worksheet Physical/ mental ability Aboriginal identity Age & life stage Socio- economic status Social Emotional Information Rural/ remote location Gender Individual experience Spiritual Physical Sexual orientation Race & Ethnicity Psychological Practical Education/ Literacy Immigrant/ refugee status Language

6. Scenario 1: Rebuilding Life After Cancer The speaker is a 64-year old white male who has survived prostate cancer after a full prostatectomy just over a year ago. He grew up in a poor family in Bosnia before moving to Canada, and obtained a grade four education. He is married and works as an independent contractor. “I’ve always been in construction and on the move. . . . I had 63 years with no sickness. You get used to taking things for granted. . . . And then suddenly, you hit this brick wall, and you don’t have no control over anything anymore. . . . When I got home from the hospital, a nurse came and visited me. I told her I didn’t need her. I can change my own dressing... The gave me pills for pain. I read the side effects on the bottle and went and threw them in the garbage. They want to relieve you of one pain and give you another two. I didn’t want that. [After the surgery] I went into a kind of depression... I mean, I understood that the recovery would be slow, but it was worse than I thought. I had no control over my peeing. If I would sneeze I would wet myself... I tried to slow down, but I’m so used to pushing myself that I just got worse. Where I grew up, in Bosnia, life was about survival... My mother bore 15 kids; four of us survived. There wasn’t enough food. We slept in a barn. I’ve always felt it was important to work hard... I kept working, and then I had a mild heart attack. My family doctor told me I had to slow down more, so I did... You know, in my work I have to deal with engineers and architects , and sometimes they treat you like you’re stupid because you don’t have a university degree. And I would give them hell... But now I try not to get into it. The sexual part isn’t there anymore... You just lose morale. I mean, it’s artificial, it’s painful... It takes the desire away, and the fear comes in and then it doesn’t work... I mean, you just have to live without it. We went back to Bosnia this year. You see all that destruction, the houses all torn up, and the furniture full of bullet holes. You just get so upset. And it helped me to quit being depressed. I just thought, hey, what the hell do I have to complain about?... I had to quit bellyaching and just try and be as happy as possible... But you should know it wasn’t my health that was the hardest to deal with. It was the way I got treated. I was working for a big company at the time I went for surgery, and I was supposed to have medical coverage. Well, I did get covered for the period right after the surgery. But then, I went back to work too soon and was still wetting myself, and then I had a heart attack and was really depressed. I tried to get long-term disability coverage, but I couldn’t.” From Prostate Tales by Ross Gray Men’s Studies Press, 2003.

7. Scenario 2: Finding Community Support Grace is a 67–year-old black woman who was born in Jamaica but has lived in Canada for 42 years. She lives with her husband, who is supportive, and is active in her church. Grace was diagnosed with Multiple Myeloma four years ago. “Besides having cancer I also have fibromyalgia, which is quite debilitating - it depletes your energy and you feel quite lethargic sometimes; it interferes with your brain, your thinking process … I also have osteoporosis quite badly in my neck and in my spine area so I have to be extremely careful not to fall. So having these three debilitating diseases I sometimes need to talk with someone. My greatest challenge is that I don’t have the desire to go out like I used to… I used to like to shop and like clothes. I just don’t have the desire now… I want to get back that spirit - to get dressed and go out by myself . [I’m a member of a support group for Caribbean women.] It started because women of colour and religious cancer survivors did not have any place to go for support or knowledge … our culture is different, our foods are different, our needs… the groups that were meeting did not understand us… In many groups, I understand, you are not allowed to mention God. Now for us that is very difficult because we rely on Godfor every aspect of our lives... I go to God for support and comfort. Many people in our community don’t like to talk about having cancer. Some don’t tell their families. (Interviewer: Why is that?) It’s a cultural thing and if we go back to slavery when our ancestors came to different countries as slaves they had to be secretive … so it comes down from that generation where we are always taught not to be too open. And that’s not the only reason why. I myself tend to be a private person and being diagnosed with cancer also you go through so many different emotions and sometimes you really don’t want to talk about it; probably psychologically we are trying to wish it away. Another problem is that many people of colour find in hospitals and different places... they are sort of treated differently. They don't treat them the same as they treat Caucasians, the other groups. Although we are uniquely different in our make-up as a person we are the same and we like to be treated with respect, dignity, as other nationalities . . . Sure we are a guest in your country but many of us have been here for a long time… after we put in our strength, our youth into the economy, when we are sick, we would like to get something back. Here is our group for four years and we can’t get a substantial amount of funding that will help the people who come to us for help. So you know, those are the things that concern us and sometimes make you a bit angry, and you wonder, why can’t we feel like we are a part of the society here?” Interview excerpts from the study “Women of Colour Living with Breast Cancer,” J. Nelson & F. Agyapong, Ontario Breast Cancer Community Research Initiative, 2004. Grace is a pseudonym

8. Scenario 3: A Long, Uncertain Journey through Cancer Julie was a 21-year-old nursing student when she was diagnosed with Hodgkin’s Lymphoma. She suffered a relapse two years later, and is now in remission. She works as a public health nurse, is completing a Master’s degree, and is in a long-term relationship. “[When I heard I had cancer] The room instantly turned to fog... the air was thick and close and I felt like I wasn’t in my own body. After I realized what had happened, I resigned myself to fight... I was going to beat it. Relapse is a different thing. No fog, nothing like that – just absolute doom, unshakable...That’s when I thought about death and thought about it hard. [My family was] supportive in many ways; they were a nightmare in others... They were there physically to take me to appointments and my mother was very supportive with medical concerns. But emotionally, my family was non-existent. During chemo, I was stuck in the boon docks with no cable, no Internet, no video games, a 20 minute drive to rent a movie, no wheels, no close friends, squat. Doing nothing is the most painful thing in the world and it is a recipe for disaster... Some friends became non-friends. I received comments such as... “If anyone was going to get cancer, Julie, it’s good that it’s you because you can beat it”... There were the usual comments from school mates who didn’t know... “Gosh Julie, you look like shit” or “Geez, aren’t you taking a lot of pills!”. But they weren’t all negative. I made three friends who I will be friends with for life... People disappear because they can’t handle it and others are angels that come out of the woodwork. But... aside from a treasured few, my experience is that people our age are pretty useless, even now. Honestly, most people think I’m strong. I hear that all the time but, truly, I think it’s crap. You don’t have a choice, do you? You get cancer and then you deal with it... [The hardest part was] not having someone to talk to about the reality of it all, to talk about my feelings... You talk a lot about your body but not about your mind and your heart and your spirit. I felt that I had to believe in myself, all by myself. Everyone else believed in my body, the body that I felt had betrayed me. I had to find strength deep inside... I have been diagnosed with Post Traumatic Stress Disorder. I’m supposed to be getting some psychotherapy but there is a waiting list... I haven’t moved past the anger stage of grieving and am going to need some help to do that. I think I’m going to live for now but I’m not sure for how long. The future scares the crap out of me but it’s been almost three years now and I feel good so it gets better as each year passes. I’m so tired of the happy pink ribbons... Cancer isn’t happy; it sucks and we deal with it and we move on and do amazing things... but let’s not sugar-coat the whole thing. What utter and complete denial. Let’s talk about the truth.” Excerpts from Julie’s survivor profile on “Realtime Cancer,” Young Adult Cancer Canada Web site: http://www.youngadultcancer.ca

9. Constellation of Needs Information: about cancer & related services, to inform decisions, reduce anxiety Physical: pain, nutrition, help with daily living Emotional: reactions & feelings, i.e. anxiety, fear, sadness Individual experience Social: family & community network Psychological: coping with cancer, changes & consequences Practical: financial, home support, childcare, transportation Spiritual: meaning and purpose in life, religious or other views

10. Social Emotional Information Individual experience Spiritual Physical Psychological Practical Constellation of Needs and Social Inequalities Physical/ mental ability Aboriginal identity Age & life stage Socio-economic status Rural/ remote location Gender Sexual orientation Race & ethnicity Education/ Literacy Immigrant/ refugee status Language

11. Our Vision for Cancer Care • The full range of needs… • • physical • emotional, spiritual • • diet, lifestyle • • sexuality, fertility • • financial, practical • • information about natural or non- medical treatments • • education about cancer risk, testing, prevention, cancer in your family and the return of cancer • • community support, cultural services • • help in making decisions • • end-of-life and grief Person-focused care… • responds to the whole person, not just the disease • healthcare team members work in partnership to provide compassionate, timely care • the team includes the person living with cancer, his or her guardian, family, or support network, and all those providing care – in hospitals, community settings, and at home. • those living with cancer are well-informed and participate in decision-making as much as they wish and are able. A high-quality person-centred cancer system that meets the full range of needs of all Canadians and their families through all stages of life with cancer. For all Canadians… equal access and respect for different needs relating to: • race, culture, or faith • language • Aboriginal status • urban, rural or remote location • immigrant or refugee status • sex, sexual orientation, gender • family structure • work and money • age • physical or mental ability • overall health and stage of disease At allstages… • testing • diagnosis • treatment • return or spread of cancer • follow-up after treatment • life after cancer • end of life • grief

12. Getting Quality Care as a Cancer Patient: • What you can expect, what you can do • The Canada Health Act aims to “protect, promote and restore the physical and mental well-being of residents of Canada and to facilitate reasonable access to health services without financial or other barriers.” Likewise, your healthcare providers aim to uphold these principles by offering the best quality care possible, based on current scientific knowledge and available resources. • As a cancer patient, or as the guardian or advocate of a cancer patient, you should expect: • treatment in a qualified hospital or cancer centre by well-trained professionals • a timely and correct diagnosis by a cancer specialist • the best standard of care available for all stages of illness, including tests, diagnosis, surgery, drug treatment, follow-up, support, and palliative care • privacy, confidentiality, protection of personal information, and access to your medical records or those of your loved one • that healthcare providers will explain to you the best treatments available, including new or experimental treatments • sensitive care in which all possible steps are taken to reduce harm • respect for cultural, racial, gender, and religious differences, as well as differences in age, sexual orientation, financial situation, and physical, mental and intellectual abilities • that your healthcare team will provide or direct you to other services you may need, including: • counselling or support (“psychosocial services”) from psychologists, social workers, cancer nurses, spiritual leaders, or community support groups • information about financial support for costs that are not covered, e.g. drug coverage, transportation • translation or interpretation • information about accessing care or treatment that is not locally available • any services required by family or other caregivers as they support you or your child/loved one through cancer

13. Ctnd... • As a cancer patient, or as the guardian or advocate of a cancer patient, you are entitled to ask questions, be informed, and take part in decisions about your or your loved one’s care, including: • expressing any concerns about treatment • asking for information in clear, understandable language • asking for a second opinion without fear that treatment will be affected • exploring treatment options in other provinces or countries • deciding whether students or researchers are present • being informed and making decisions about alternative or complementary treatments • refusing any course of treatment • seeking legal advice about a complaint if necessary • You can enhance the quality of care by providing your healthcare team with as much information as possible in the following areas: • past and present health concerns, hospital stays, medications, etc., including information about home, social life, school, or work that might influence care • any difficulties you may have in complying with treatment schedules and appointments • any difficulties you may have in affording treatment or related expenses • any legal issues or documents that relate to care or decision-making e.g. power of attorney or court orders • the need for translation or interpretation services • emotional distress, isolation, or depression, and the need for social or peer support

14. Works Consulted (for reference and further reading) Access Alliance. Racialized Groups and Health Status. 2005. Available at: http://atwork.settlement.org/downloads/atwork/Racialised_Groups_Health_Status_Literature_Review.pdf Austin, S., Femmes Francophone Atteintes du Cancer du Sein, Project report available at: http://www.womensresearch.ca/PDF/programs/francophone.pdf Beavon, D. and Cooke, M. (2003) An Application of the United Nations Human Development Index to Registered Indians in Canada, 1996, in White J.P., Maxim, P.S. and Beavon, D. (eds.) Aboriginal Conditions: Research as a Foundation For Public Policy.Vancouver: University of British Columbia Press. Blank, T.O. (2005). “Gay Men and Prostate Cancer: Invisible Diversity,” Journal of Clinical Oncology23(12) pp. 2593-2596. Breast Health Awareness for Women with Disabilities. Web site: http://www.bhawd.org/sitefiles/index2.html British Columbia Hospice Palliative Care Association. (2007). Volunteer Standards for Hospice Palliative Care in British Columbia. Available at: http://www.hospicebc.org/ Canadian Association of Psychosocial Oncology (CAPO) and TransCanada PipeLines Limited. (2003). The Emotional Facts of Life with Cancer: A Guide to Counselling And Support For Patients, Families and Friends. Available at: www.capo.ca Canadian Cancer Society (Ontario Division). (2003). Breaking Down the Barriers: The Canadian Cancer Society’s Study of Cancer Patient & Caregiver Needs in Ontario. Available at: http://www.cancer.ca/ccs/internet/standard/0,3182,3543_12947_151165132_langId-en,00.html Cancer Advocacy Coalition of Canada. (2007). Report Card on Cancer in Canada. Available at: http://www.canceradvocacy.ca/reportcard/2007/Report%20Card%20on%20Cancer%20in%20Canada,%202007.pdf Fitch, M. (2000). “Supportive Care for Cancer Patients,” Hospital Quarterly, Summer 2000.

15. Works Consulted ctnd. Fitch, M.I. (2005). “Needs of patients living with advanced disease,” Canadian Oncology Nursing Journal15(4) pp. 230-42. Fitch, M.I. (2008). “Supportive care framework,” Canadian Oncology Nursing Journal, 18(1) pp. 6-14. Gould, J. & Grassau, P. (2005) “Spirituality and Breast Cancer,” in breast cancer info exchange, Ontario Breast Cancer Information Exchange Partnership (OBCIEP). Available at: http://www.obciep.on.ca/Files/Spring05RevisedWrd.pdf Gould , J., Sinding, C., Mitchell, T., Fitch, M., Aronson, J., Burhansstipanov, L., Gustafson, D., McGillicuddy, P., Peng, I. (2005) “How Gender, Poverty, Age and Aboriginal Identity Matter in Women’s Similar Experience of Breast & Gynecological Cancer,” Ontario Breast Cancer Community Research Initiative Newsletter, Fall 2005. Available at: http://www.crwh.org/PDF/OBCCRI/fall2005.pdf Gould, J. (2004) “Lower Income Women with Breast Cancer: Interacting with Cancer Treatment and Income Security Systems,” Canadian Woman Studies24(1) pp. 31-36. Gray R.E., James, P., Manthorne, J., Gould, J., Fitch, M.I. (2004). “A consultation with Canadian rural women with breast cancer,” Health Expectations7(1):40-50. Gray, R. (2000). Prostate Tales: Men’s Experiences with Prostate Cancer. Harriman, TN: Men’s Studies Press. Hospice Northwest Volunteer Training Program. Summary of Training Modules. Thunder Bay, ON. Available at: http://www.hospicenorthwest.ca/volunteer/docs/HNW_Volunteer_Training_Program_Summary.pdf. Jantzi, S., Murphy, S., Simpson, J., Hospice Palliative Care Volunteer Project Team (2003). Provincial Hospice Palliative Care Volunteer Resource Manual. Province of Nova Scotia: Cancer Cancer Nova Scotia. Lesbians and Breast Cancer Project Team. (2004). Coming Out About Lesbians and Cancer. Project report available at: http://dawn.thot.net/lbcp/report.html Lesbians and Breast Cancer Project Team. (2004). “Silent No More: Coming Out About Lesbians and Cancer,” Canadian Woman Studies24(1) pp. 37-42. Nelson, J., Gould, J., Keller-Olaman, S., Eds. (2009). Cancer on the Margins. Toronto: University of Toronto Press.

16. Works Consulted ctnd. Nelson, J. & Macias, T. (2008). “Living with a White Disease: Women of Colour & Their Engagement with Breast Cancer Information,” Women’s Health and Urban Life7(1). Available at: http://www.scar.utoronto.ca/~socsci/sever/journal/contents7.1.html Nelson, J. (2006) Examining breast cancer information from racially marginalized perspectives: a community-based analysis. Project report available at:http://www.womensresearch.ca/PDF/programs/Cancer_Info_Margins.pdf Nelson, J. & Agyapong, F. (2004). “Women of Colour Living with Breast Cancer: The Search for Support.” Canadian Woman Studies24(1) pp. 167-172. Nyhof-Young, J., Friedman, A., Jones, J.M., Catton, P. (2006). “Partners in Caring: Administration of a Hospital-based Volunteer Program for the Education and Support of Cancer Patients,” The International Journal of Volunteer Administration 14(2), p. 73-82. Olive Branch of Hope & Ontario Breast Cancer Community Research Initiative (2005). Women of Colour Living with Breast Cancer: sharing, supporting, surviving. Booklet, available through The Olive Branch of Hope Breast Cancer Support Services. Contact: 416 256-3155. http://www.theolivebranch.ca/index.asp?pid=9 Ontario Breast Cancer Community Research Initiative. (2007). Fact Sheet: “Cancer Does Not Discriminate.” Available at: http://www.womensresearch.ca/PDF/programs/Marginalized_nov23.pdf Ontario Breast Cancer Community Research Initiative. (2007). Fact Sheet: “Understanding the Co$ts of Breast Cancer.” Available at: http://www.womensresearch.ca/PDF/programs/Breast_Cancer_Costs.pdf Ontario Breast Cancer Community Research Initiative. (2003). 'Nothing Fit Me': The Information and Support Needs Of Canadian Young Women with Breast Cancer. Final Report of the National Consultation with Young Women with Breast Cancer prepared in partnership with the Canadian Breast Cancer Network. Available at: http://www.cbcn.ca/docs/Nothing%20Fit%20Me%20Final%20Report.PDF Ontario Breast Cancer Community Research Initiative. (2001). Perspectives of Rural Women with Breast Cancer. Canadian Breast Cancer Network Focus Group Project 2001. Available at: http://www.cbcn.ca/en/?page=1044&category=186&section=1&region=ALL&prevsearch

17. Works Consulted ctnd. “Realtime Cancer Survivor Profiles.” Young Adult Cancer Canada web site. Available at: http://www.youngadultcancer.ca Statistics Canada, “Lower income and declines in self-rated health,” The Daily, June 5, 2007. http://www.statcan.ca/Daily/English/070605/d070605a.htm Stewart, D., Cheung, A., Ferris, L., Hyman, I., Cohen, M., Williams, J., eds. Ontario Women's Health Status Report. Feb. 2002. available at:http://www.ontla.on.ca/library/repository/mon/4000/10305833.pdf Task Group on Volunteer Best Practices and Quality at the Health Canada Secretariat on Palliative and End-of-Life Care. Web site: http://www.virtualhospice.ca/Advertisement/DisplayAdvertisement.asp?lngAdvertisementID=33 The Colour of Poverty Campaign. (2007). Understanding the Racialization of Poverty in Ontario, Toronto: Colour of Poverty Campaign. Available at www.colourofpoverty.ca.

18. Cancer Information and Advocacy Resources (National) Brain Tumour Foundation of Canada. www.braintumour.ca Canadian Association of Psychosocial Oncology. www.capo.ca Canadian Breast Cancer Foundation. www.cbcf.org Canadian Breast Cancer Network. www.cbcn.ca Canadian Cancer Society. www.cancer.ca Canadian Partnership Against Cancer. www.partnershipagainstcancer.ca Canadian Prostate Cancer Network. www.cpcn.org Cancer Information Service. www.cancer.ca Ph: 1-888-939-3333 Childhood Cancer Foundation. www.candlelighters.ca Gilda’s Club. www.gildasclub.org Leukemia and Lymphoma Society of Canada. www.leukemia-lymphoma.org Look Good Feel Better. www.lgfb.ca Lung Cancer Canada. www.lungcancercanada.ca Ovarian Cancer Canada. www.ovariancanada.org Public Health Agency of Canada. Centre for Chronic Disease Prevention and Control – Cancer. www.phac-aspc.gc.ca/ccdpc-cpcmc/cancer/index_e.html Willow breast cancer support Canada. www.willow.org Young Adult Cancer Canada. www.youngadultcancer.ca

19. Activity 6: List of Local Resources • For each category below, use the resources available to you (online, libraries, peers, supervisors) to find 2 local resources or services that could be useful to someone living with cancer or their family members. When complete, check your list with your supervisor and verify how to make appropriate referrals. • Physical (freedom from pain, nutrition, activities of daily living) • Contact info: _________________________________________________________ • Description: ___________________________________________________________ • 2. Contact info: _________________________________________________________ • Description: ___________________________________________________________ • Informational (symptoms, disease, treatment, coping skills) • Contact info: _________________________________________________________ • Description: ___________________________________________________________ • 2. Contact info: _________________________________________________________ • Description: ___________________________________________________________ • Emotional (anger, despair, fear, hopelessness) • Contact info: _________________________________________________________ • Description: ___________________________________________________________ • 2. Contact info: _________________________________________________________ • Description: ___________________________________________________________

20. List of Local Resources, continued • Social (community networks) • Contact info: _______________________________________________________ • Description: __________________________________________________________ • 2. Contact info: _______________________________________________________ • Description: __________________________________________________________ • Spiritual (meaning of life, illness and death) • Contact info: _______________________________________________________ • Description: __________________________________________________________ • 2. Contact info: _______________________________________________________ • Description: __________________________________________________________ • Practical (finances, home help, childcare) • Contact info: _______________________________________________________ • Description: __________________________________________________________ • 2. Contact info: _______________________________________________________ • Description: __________________________________________________________ • Psychological (coping, identity issues) • Contact info: _______________________________________________________ • Description: __________________________________________________________ • 2. Contact info: _______________________________________________________ • Description: __________________________________________________________ • 2

21. Person-Centred Cancer CareLearning ToolkitEvaluation Form Thinking about the content of today’s workshop, what main ideas or concepts were most important or useful to you? Thinking again about the content of the workshop, were there any areas that you felt could be improved? If so, how? Thinking about the activities in today’s workshop, which ones did you find most useful?

22. Evaluation form, continued Were there any activities in today’s workshop that could be improved? If so, how? What did you think of the presentation of today’s workshop (e.g., format, design, length, etc.)? Do you have any other recommendations for improving today’s workshop? Thank you for your comments! 2