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

1. Providing Person-Centred Cancer Care:A LEARNING KIT FOR VOLUNTEERS Canadian Partnership Against Cancer Cancer Journey Action Group April, 2009

2. Today’s Agenda • Introductions and Goals • Part 1: • Patient Needs • Supportive Care • Person-Centred Care • Part 2: • Social Inequalities • Unequal Access • Social Factors Affecting Need and Access • Wrap-Up • Overview of Resources • Further Questions • Evaluation

3. Introductions and Today’s Goals • Who is here today? • Today’s goals: • To develop an understanding of the range of needs experienced by cancer patients, based on the concept of “person-centred care” • To develop an appreciation for the broader social factors that influence those needs and present barriers to addressing them

4. Activity 1: • How might cancer affect a person’s life? • What concerns might the person have about . . . • family • work • their illness • other?

5. 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.

6. 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

7. 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]

8. Discovering the range of needs

9. Part 1: 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. Practical & Financial • Hidden costs: • Prescription drugs • Nutritional supplements • In-home healthcare • Transportation for treatment • Parking fees • Accommodation and meals • for long distance travel • Childcare • House cleaning • Inability to work • People may be unaware of upcoming costs • May not know assistance is available • Difficulties with access

11. Average Monthly Costs of Cancer Patients Reported Travel: $ 372 Out of pocket expenses: $ 213 ------------------------------------------- Out of pocket expenses include prescription drugs, in-home health care, homemaking services, accommodations, meals, etc. Source: Longo, Fitch, Deber, Williams, 2006 “So you’re not anticipating that there’s [anti-nausea] drugs out there that cost $100-a-pill, you know?” [survivor on low income]

12. Support “I immediately thought ‘death’, when I heard the word cancer. If I would have spoken to a survivor, I would have seen someone who continued to live and thrive after a diagnosis.” “It was scary to be on my own [after completion of treatments]. I thought, ‘Now what do I do?’” Emotional: Reactions and feelings, i.e. fear, sadness, anxiety

13. Support • Psychological: • Assessment of and treatment for anxiety, depression • Dealing with fear, changes, effects • Developing coping skills • Finding peer support if desired “The nurse came in and gave me a big binder and sent me on my way… it’s not enough just to give a patient a binder – we also need referrals to support.” “The only thing I was offered was medical treatment – but no psychological support, or any kind of support that could send you to a group of people who are also going through similar circumstances… nothing like that was suggested.”

14. Information Patients report: Not receiving the information they need – about cancer or support/services available Not knowing where to find it Not ‘hearing’ information Information being too difficult to understand, too medical, or not in their language • Receiving too much information; being overwhelmed • Needing information in particular form, at certain times • Finding out about services too late

15. Spirituality “cancer… depletes your energy – it affects you psychologically; it affects you spiritually. It’s like your spirit is sick as well as your body …” “…it’s a primary relationship in my life because I was conscious of that when I was lying on the stretcher waiting to go in for the mastectomy and there’s nobody else around…certain things in life you face on your own and it’s good to have a sense that you’re not alone…” [patient speaking of relationship with a deity]

16. Social and family issues All can experience: Tension in relationships Fear, anxiety Awkwardness, difficulty discussing cancer Change in roles, family dynamics Patient can experience: • Lack of understanding from family or friends • Assumptions based on appearance • Pressure to put up “brave front”; be positive • Social stigma attached to cancer Families and informal caregivers also need: • Support – emotional, practical, professional/peer • Information • Referrals to resources

17. Supportive Care • Range of services and expertise required by people living with or affected by cancer, aside from medical/physical needs • Through all stages of the cancer journey : • Diagnosis • Treatment • Recovery • Survivorship • Recurrence • Palliative care • Bereavement

18. Activity 2: Supportive Care Resources An older man and his wife have to drive 4 hours to the hospital in the city for his lung cancer treatments. A single parent is in recovery from ovarian cancer. She is having trouble taking care of her children and doing household chores.

19. A person has just found out they have cancer, and would like to talk to someone who has had a similar experience.

20. Providers of Supportive Care for One Person/Family community agencies, support groups family, friends, neighbours homecare worker/visiting nurse palliative/ end-of-life care, grief resources faith community PERSON WITH CANCER & FAMILY MEMBERS Living through a spectrum of experiences with cancer counsellors, social workers funeral homes community hospital employer libraries, internet pharmacy family physician cancer centre, host hospital translator/interpretor physio/occupational therapist, dietician Adapted from M. Fitch. Supportive Care for Cancer Patients. Hospital Quarterly.

21. Activity 3: A Vision for Cancer Care 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.

22. Person-Centred Care?

23. Person-centred 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.

24. The full range of needs…?

25. 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

26. For all Canadians…?

27. 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

28. At allstages…?

29. At allstages… • testing • diagnosis • treatment • return or spread of cancer • follow-up after treatment • life after cancer • end of life • grief

30. 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

31. What qualities are needed to provide person-centred care? • Caring, compassionate • Good listening skills, focusing on the person, acknowledging and validating person’s feelings • Asking questions to determine needs • Treating each person as an individual, being sensitive to differences • Learning about person’s family, social network, and broader life context • Establishing good, longterm relationships with person and family, as appropriate • Assisting and supporting caregivers with their own needs ...

32. What qualities are needed to provide person-centred care? ... • Being well-informed about sources of support and information, i.e. community groups, libraries, professionals, phone support, internet. • Providing information, or directing person to appropriate help • Patience as person absorbs information and deals with feelings • Explaining roles of different healthcare providers and sources of support for different issues

33. What qualities are needed to provide person-centred care? ... Being alert to possible emotional distress Being alert to signs of other supportive care needs: spiritual, practical, financial, etc. Knowing limits: when to consult other healthcare team members, when to facilitate a referral Being alert to assumptions/stereotypes based on appearance or beliefs Avoiding advice or judgment about person’s situation or choices Sharing and relating to person’s experience to the appropriate degree Maintaining confidentiality

34. Activity 4

35. Summary: Part I Brainstorming: needs of patients physical informational emotional psychological social spiritual practical Constellation of Needs: financial, emotional and psychological support, information, spirituality, family support Short scenarios: identifying supports or services Vision for person-centred care: meaning of person-centred the range of needs “all Canadians” “all stages” Qualities for person-centred care

36. 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

37. Social Emotional Information Individual experience Spiritual Physical Psychological Practical Part 2: 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

38. Social Inequality • “Person-centred care” = seeing the person in social and historical context • Some groups face societal barriers that exacerbate problems and make access more difficult • Systemic causes = not personal, not cultural • Different systems of discrimination can act together • All forms of inequality can have an impact on a person’s immediate coping abilities and needs

39. Main points 1. People begin from different and unequal starting points; they are not on a level playing field. 2. People are often dealing with larger psychosocial factors that are beyond their control.

40. Unequal Access • Families of colour are from 2 to 4 times more likely than white families to fall below the low income cut-off (LICO). • Between 1980 and 2000 in Toronto, the poverty rate for the non-racialized population fell by 28%, but poverty among families of colour rose by 361%. • The highest unemployment rates can be found among Canadian-born men of colour (11.5%) and immigrant women of colour (10%). • 32% of children in families of colour, and 47% of children in recent immigrant families in Ontario live in poverty.

41. Women from lower income groups and women of colour are less likely to have clinical breast exams, mammograms, and PAP tests. Immigrants must wait three months after arrival in Canada before they are eligible to apply for health coverage. Refugees and people without legal status often have difficulty accessing care because they cannot obtain coverage at all. Unequal Access • People from homes with incomes of less than $20,000 are almost 3 times more likely to see a decline in their health than people with the highest incomes.

42. Groups at higher risk of poverty Racially marginalized groups Recent immigrants Refugees Aboriginals Lower and working class earners Seniors Women Single parents Those with disabilities/other illness

43. Socio-Economic Status “I mean they make an effort to show women of color, but it’s also… I work with low-income communities. And it’s [not] even middle-class women, OK - with jobs, with cells, with bicycles [laughter] ... And I’m not saying that you have to portray misery. [But] the reality is that a lot of women are (not) going to identify ... with this picture.” [immigrant woman, about cancer information] Not only about finances, but class differences & perceptions Status, “respectability” Assumptions about lifestyle “choices”

44. “There were times (during my cancer treatment) that I was (at work) that I shouldn’t have been here…times that I couldn’t even walk from my desk to the computer which was about three feet.” [Q: Did you have a choice not to work?] “Financially, no.” [survivor on low income] “I went to [a support organization] and they kept on telling me things that I couldn’t afford… [They] kept on mentioning things like, oh, you went through chemotherapy, you must take those energy drinks and all… I couldn’t afford to take them…” [recent immigrant, single mother]

45. Race and Culture • Concerns not reflected in cancer literature and information • Feeling unwelcome or uncomfortable in mainstream support groups • Discrimination in the healthcare system • Fear of encountering racism impeding ability to access treatment and support services • Less information/awareness in some communities • Lack of race- and culture-specific information and services

46. “The information that was out there seemed to always focus on white women, to the extent that you would almost think that breast cancer is a white disease…” “I didn’t go back. I was the only black person there really. They were more friends with themselves – like, among themselves…” [speaking of a support group] “nobody comes to openly saying ‘we don’t want you here’, it’s just the way they treat you… Nobody is listening to anything you have to say… [so] the normal reaction is ‘what I have to say is not important to them’.” [speaking of a support group]

47. Aboriginal Status: disparities United Nations Human Development Index (Beavon and Cooke, 2003)

48. Aboriginal Status • Historical and ongoing oppression = • poorer health, less access to resources • Under-screening and later diagnoses • Poverty and financial barriers • Lack of information/education about cancer • Discrimination within white society • Lack of culturally-specific resources and • community peer support • Geographic disparity

49. Language • Lack of translation services • Children translating • Low literacy • Medical terminology “The first generations... they tend to depend on the second generation, which are their children, who speak English and have gone through the English system here, to provide that information, but it becomes threatening for a child to translate it to the mother.”

50. Language “C’est gênant des fois de devoir présenter des excuses aux patients en disant, ‘Pardonnez-moi, et vous savez, je vais faire mon possible pour trouver des renseignements en français ou du soutien pour vous, mais très souvent [ce n’est juste pas disponible]. [“I feel very embarrassed sometimes about apologizing to patients in saying, ‘I’m really sorry, and you know, I’ll do my best to find some French information or support for you, but very often [it just isn’t available].”]