The Patient Experience - The Women

The women speak candidly about dealing with their diagnosis of ovarian cancer, their relationships with health care professionals, the side effects of treatment, the multiple ways their lives have been affected by their illness, and the effects of discovering one has a genetically linked disease.

Each woman’s experience provides fertile ground for learning. Discussion questions help you delve more deeply.


Annie

Annie

Annie confronts her ovarian cancer with a great sense of humour and with a great deal of trust in the health care system, having already been treated for breast cancer. Drawing helps her cope and gives her a feeling of support.

Some Discussion Questions Relevant DVD Clips Resources
Annie had been diagnosed with breast cancer 15 years before her diagnosis with ovarian cancer. Does this make the news any easier? Impact of recurrence
When statistics (mortality, success of drugs) are quoted to her Annie takes heart from the possibility that she is on the winning side. Should survival statistics be given to patients? Why or why not? How can statistics be included in an honest discussion and tailored to each patient’s individuality? Coping Seeking information
Often when we think of support, we mean from other people. When Annie talks about support she received she refers to nature as one source and her drawing as another. What is your reaction to this concept of support? Is it something that might be put to use with patients that you have cared for? Support/getting needs met
Annie’s parents were in the medical professions (her father was a physician, her mother was a nurse). She attributes her trust in the health care professionals and the treatment that is offered to her to this fact. How can we respond to patient bias in a respectful, neutral way? Communication with health professionals
She is a confident individual with a well-developed sense of humour. How can we respect and acknowledge equally those patients in our care who are less confident and affable? Coping, Support/getting needs met
Sometimes, because we know little about patients as people, they surprise us with their skills or capabilities. Annie’s health care team may not have known that she is an art professor and draws with a great deal of skill. Can we afford not to see our patients as unique individuals? How can this knowledge be used therapeutically? Can this enrich our clinical experience? Coping, Support/getting needs met
Issues in Communication and Coping Starting Point Resources
Impact of recurrence 00:00
Coping 01:22
Support/getting needs met 03:37
Communication with health professionals 04:36
Seeking information 05:03
Side effects 05:39
Role of hope 06:09
Annie

Cora

Cora, an Argentinean, was told her diagnosis of ovarian cancer over the phone. Cancer has contributed to a great deal of worry and fear to Cora’s life. She comments on the changes in her relationship with her husband and how she deals with periods of dependency as a result of the ovarian cancer.

Some Discussion Questions Relevant DVD Clips Resources
What are some of the implications of giving bad news over the phone? In person? Impact of diagnosis
How does Cora’s illness affect her? In what ways could you help as a professional? Impact of diagnosis, Support services, Coping, Hair loss, Side effects, Support/getting needs met, Inner strength, Stigma of cancer
What are the indications that the family is coping with their circumstances? What resources and supports are available to people less fortunate, in marginalized situations i.e. the elderly, chronically ill, mentally ill, those without financial resources, lack of social supports etc.
Why is it helpful to understand a patient’s daily routine?
Cora has periods during which she is very ill as a result of her cancer treatment. What changes have there been in her role as a mother? What might be going on from the perspective of her children? Coping
Can you empathize with Cora’s concern about her hair loss? How would you manage/approach a discussion about a concern such as this? What services have been helpful for Cora? Hair loss, Inner strength, Stigma of Cancer
Cora seems very familiar about the side effects of treatment that she is receiving and how to deal with them. Has it been your experience that patients are informed about treatment side effects? What do patients need to know and who informs them? Hair loss, Side effects
In what ways does Cora’s illness and treatment make her life more complex? In what ways does she become more dependent/independent? Coping, Support/getting needs met, Inner strength
What are the losses that one sustains as a result of a traumatic diagnosis such as ovarian cancer? List them. How do individuals and their families cope with loss? What can you do to help them? Impact of diagnosis, Coping, Side effects, Hair loss, Inner strength
What have you learned from Cora that you can apply to other patients in your interactions?
What kinds of services are available in the community that could be called upon to assist patients and their families as they cope with a difficult illness?
Issues in Communication and Coping Starting Point Resources
Impact of diagnosis 00:00
Support services 00:59
Coping 2:34
Hair loss 04:19
Side effects 06:04
Support/getting needs met 07:29
Inner strength 10:03
Stigma of cancer 11:50
Annie

Julia

Julia is a violinist who finds the loss of her fertility almost harder to accept than her diagnosis. She has a husband and child and had been hoping to have a larger family. Her great determination to stay strong plays a big role in how she copes with her situation.

Some Discussion Questions Relevant DVD Clips Resources
Why is Julia’s sense of loss over “being female” so important to her? In what way could this affect her decisions regarding treatment? Impact of diagnosis
What are the physical and emotional effects of premature menopause in younger women? What support is available? Who should inform a patient about difficult outcomes and critical treatment, and when? Is “inform” the right word? How should a patient receive information? Impact of diagnosis, Geting back to normal, Coping
What support systems is Julia using for her son while she recovers? Are there other support systems available to individuals who cannot rely on friends or family? Consider how this might be different in a rural setting. Coping, Getting back to normal, Support/getting needs met
How can we facilitate communication between parent and child? What does a parent tell a child about her illness? How might Julia’s baldness affect her young son? Coping, Support/getting needs met, Getting back to normal
How do we prepare a patient for the various reactions that her diagnosis, appearance, or side effects may elicit in her world? Hair loss, Side effects, Illness trajectory
Reflect on your reaction to a patient choosing to participate in a clinical trial for cancer treatment. What information does a patient need and where is it available? What are the advantages/disadvantages of participating in clinical trials? Clinical trials
Julia wants a lot of information about her illness and her treatment. What is your reaction to patients asking questions about their illness and treatment? Many people go to the Internet and bring back to their health care professional information they have obtained from there. What is your reaction to this? What might you tell your patient about seeking and using information on the Internet?
How does medical jargon affect patients? How can you stay connected to your patient and properly explain their illness?
Issues in Communication and Coping Starting Point Resources
Impact of diagnosis 00:00
Getting back to normal 01:24
Coping 1:33
Hair loss 04:07
Support/getting needs met 04:53
Side effects 06:50
Clinical trials 08:20
Seeking information 08:57
Communicating with health professionals 09.36
Annie

Peggy

Peggy is a nurse with many years of experience; nonetheless, she needs information about what she is going through. She meets her diagnosis with a sense of hope and has learned new things as a result of her ovarian cancer.

Some Discussion Questions Relevant DVD Clips Resources
Does having medical knowledge affect someone’s reaction to a serious illness?? Is Peggy’s reaction different from someone outside the medical profession? Would you employ different skills and techniques with a health care professional? Why? Impact of diagnosis, Health professional as patient
Define a traumatic diagnosis. What kind of emotional reactions might someone have to this kind of news? What do people need from us? Impact of diagnosis, Coping, Hair loss
What are the advantages of “staying in the present” to cope? How can we value a patient’s coping strategy when we don’t agree? Coping, Role of hope
Peggy has grown closer to her daughters and believes they have grown as a result of her having ovarian cancer. How can we assist the patient and her/his family in the management of hope in the face of serious or terminal illness? Impact on family, Hope, Coping
Peggy indicates patients don’t always hear what they are told by their doctors. Consider some possible causes. How do we know if or when patients are ready, willing or able to hear information? Impact of diagnosis, Coping, Seeking information
What are the strategies that Peggy recommends to use when communicating with health professionals? Are they useful for all patients? Seeking information, Communicating with health professionals
Peggy believes in the importance of physical activity and takes walks in the park. She takes great solace from nature and considers it healing. How can you support the comfort, needs and wishes of patients dealing with a difficult diagnosis? What kind of communication inspires comfort? Is this part of our role? Coping
Consider the different stages that patients go through as they cope with a traumatic diagnosis and treatment. Is there a pattern? How can you stay connected with the patient throughout acute emotional phases? Impact of diagnosis, Coping, Seeking information
How has Peggy used humour to her advantage? Are there compelling reasons to respect and encourage humour with certain patients? Coping, Hair loss
Peggy refers to hope as being “paramount” in dealing with her diagnosis and the challenges that the illness and treatment bring. She says that “living with cancer” is hopeful. How can we help seriously ill patients manage hope? Coping
Some patients say, as Peggy does, that they learn more about themselves as a result of confronting a difficult diagnosis—they turn a potentially negative experience into a positive one. Can we reinforce these patients and facilitate this discovery in others? How? Coping, Role of hope
Issues in Communication and Coping Starting Point Resources
Impact of diagnosis 00:00
Hair loss 10:10
Coping 4:05
Role of hope 12:15
Impact on family 06:52
Seeking information 07:34
Health professional as patient 02:18
Communicating with health professionals 09:09
Annie

Sharon

Sharon got married in the midst of her treatment for ovarian cancer. She speaks articulately about the losses suffered as a result of her illness and about the support that she receives from other women with ovarian cancer in person and online

Some Discussion Questions Relevant DVD Clips Resources
Sharon discusses the impact that ovarian cancer has had on her life and the efforts that she has made in getting back to who she was before the diagnosis. What are the approaches that she has used? Impact of diagnosis, Getting back to normal, Coping, Seeking information, Support/getting needs met
Throughout her discussion, Sharon refers to the losses that she has suffered as a result of ovarian cancer and the stages of grieving that she has gone through. Consider the losses she has experienced. How has she handled grieving? Consider the complexity of grief and what patients need during this stage of their illness. How can we respond to grief? Getting back to normal, Support/getting needs met
Sharon refers to the support and information she has received from other women and from an ovarian cancer support group. In what ways can we demonstrate that we value a patient’s autonomy? Getting back to normal, Support/getting needs met
It is her belief that her doctor changed in the process of his encounters with her, in recognizing that women need information about ovarian cancer. Do you think a patient can have an effect on the health care professional? Have you had an experience in which a patient has had a profound effect on you? Coping
Sharon says that she felt “like a cancer patient” when she was bald and tired from her treatments. Having an illness like cancer might be experienced as a stigma, a disgrace. What can you as a health professional do to minimize the negative connotation and “normalize” the illness experience? Hair loss
If a patient asked you for help in telling her family or friends about her serious illness, how would you respond?
Denial of illness can be an issue for a patient and those close to her. Perhaps some of Sharon’s friends expressed their denial by offering platitudes such as “You’ll be fine”. Can you be positive and realistic with patients and their loved ones when they are confronted with bad news? Must a patient face reality at any cost? Does denial ever play a positive role in the illness process? Support/geting needs met
Sharon mentions the loss of control she experiences as a result of ovarian cancer. What kind of communication skills would be helpful in this discussion? Coping, Role of hope
Issues in Communication and Coping Starting Point Resources
Impact of diagnosis 00:00
Getting back to normal 00:36
Coping 1:05
Seeking information 06:55
Side effects 08:58
Support/getting needs met 10:48
Hair loss 14:26
Role of hope 16:16
Annie

Teresa

From the Philippines, Teresa has a background in law. Having relatives in the health professions and a matter-of-fact attitude are two of the assets that enable her to confront her diagnosis with ovarian cancer.

Some Discussion Questions Relevant DVD Clips Resources
Teresa seems to take her diagnosis, her treatment, and the side effects in stride. What might be the implications of this stoicism for health care professionals involved in her care? Impact of diagnosis, Coping, Hair loss
In contrast to Teresa there are patients who are quite disturbed by a serious diagnosis. Is there really a normal reaction to a serious diagnosis?
Teresa says she is not religious, but rather spiritual. Is there a difference? How would you approach a discussion about this?
Teresa has relatives who are health professionals—they provide her with information and can interpret reports for her. How can you build an alliance with Teresa and value the contribution of family members?
Are there limits to what a patient should know about his/her disease and its treatment? Can limits be enforced?
Teresa indicates there may be cultural taboos about a serious illness such as ovarian cancer. In some cultures the patient is not told the seriousness of his/her diagnosis, although the family are. What might be the ethical implications of not informing the patient while telling family members or vice versa? Under what circumstances might this be appropriate? How would you handle this?
Instead of talking about herself, Teresa discusses other women. Consider the possible connection between depersonalizing illness and a stoic presentation. How can you help a patient personalize their illness?
Issues in Communication and Coping Starting Point Resources
Impact of diagnosis 00:00
Coping 00:30
Seeking information 01:27
Communicating with health professionals 02:11
Stigma of cancer 02:48
Hair loss 03:10
Role of hope 03:47
Annie

Ying

Ying comes from Mainland China where she worked as a cancer researcher. Adapting to a new country and developing fluency in English have been sources of stress for her and her family. As she copes with ovarian cancer her church community has been an enormous support.

Some Discussion Questions Relevant DVD Clips Resources
Ying is not entirely fluent in English. How might this affect her health care? Does a patient’s lack of fluency affect the health care that you provide? How can a health professional appreciate and recognize the patient who is not fluent in English and facilitate understanding? What skills and resources might you use? Language/cultural issues, Coping
What might be the effect of using a translator when your patient has limited English? Might there be differences if the translator is the patient’s family member as opposed to a translator who is not connected to the patient? Language/cultural issues
Ying has received an enormous amount of support from her church and has, as a result of her ovarian cancer, become quite religious. What is your reaction to this? What skills and techniques might you consider using with a patient whose culture, religion or belief system create a conflict with regard to prescribed treatments? How can religious/spiritual concerns be addressed and valued in a health care setting? Support services, Support/getting needs met
What effect might it have for a patient not to have the support of a community behind her? What are some of the cultural challenges as a result of our health care system?
As a career researcher, Ying has been underemployed in Canada, first as a 7-11 clerk and more recently as a lab technician. Her husband has also experienced frustrations and difficulties in seeking suitable employment, becoming fluent in English, and now coping with his wife’s illness. Consider the psychological effects on family members and what they might require from us. What are some of the community resources that they might be referred to? Support services, Support/getting needs met, Language/cultural issues
Her daughter seemed to experience some difficulties at school during the course of Ying’s illness. How might a teenager react to a parent’s serious illness? If Ying had come to you, asking for help with her daughter, what would you do? Impact on family
It seems the reaction of a number of Ying’s acquaintances was “you are going to die.” Her psychologist helped her understand that her cancer diagnosis is just one part of her life—she still has different roles with family and job. How would you approach the patient whose illness becomes central to his/her identity? Stigma of cancer, Support services
Ying’s employer is quite flexible in accommodating her illness and treatment. Can we help solve job related issues i.e. social resources in the workplace? Is there support we can offer? Coping
Issues in Communication and Coping Starting Point Resources
Impact of diagnosis 00:00
Support services 00:39
Support/getting needs met 01:41
Language/cultural issues 03:37
Hair loss 06:59
Side effects 07:29
Impact on family 08:30
Stigma of cancer 09:30
Coping 10:55