1. Patients' needs at time of diagnosis
2. How nurses assess for distress
3. Expected symptoms of distress and patients at increased risk
4. How nurses can help at the time of diagnosis
5. Guidelines for assessing patients from a cultural perspective
6. Information/ resources for patients after diagnosis
7. Emotional supports for patients after diagnosis
8. Information on practical supports for patients after diagnosis

1. Patients' needs at time of diagnosis

When told their diagnosis, most women experience acute emotional distress, fear and disbelief. How did I get cancer? Will I die from it? How will treatments affect my work and family? Will I lose my breast? Does my diagnosis put my family at increased risk for developing breast or another type of cancer?

Patients quickly move into a series of consultations with healthcare providers and appointments for further testing and are then expected to make important treatment decisions (e.g. type of surgery, adjuvant treatments) about issues they may have very little knowledge and background on. Misinformation and information overload for the patient and family are a major concern at this stage.²

Distress at the time of diagnosis varies from patient to patient, but all experience some level of distress. Failure to recognize and treat distress leads to several problems. Patients in distress may make extra visits to the physician's office and the hospital emergency department. Distressed patients have trouble making decisions about treatment and adhering to treatment; they may also become dissatisfied with their care.¹ Management of the extremely distressed patient (who is anxious, depressed, and angry) adds to time demands as well as stress on busy oncology staff.

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2. How nurses can assess for distress

Distress in the context of cancer can be defined as “a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis.” ¹

When assessing distress in those who are newly diagnosed with breast cancer, it is important to understand the nature of the underlying issues causing distress and that the psychosocial impact on a particular person is influenced by issues that affect a person's coping, quality of life, and well-being. Nurses must ask questions within this context to gain a full picture of the patient's level of distress and to identify ways to help.

Screening Tools for Measuring Distress

There are several types of screening tools available for measuring distress (e.g. Distress Thermometer, QOL Breast Cancer Instrument, Brief Symptom Inventory (BSI))^1,3 that can be used at the beginning of each clinic appointment to help ensure that all potential causes of distress are identified.

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3. Expected symptoms of distress and patients at increased risk

Nurses can discern between normal distress levels and those that exceed normal, indicating that the patient should be referred for supportive care services (BC Cancer Agency Patient and Family Counselling Services, community counsellors, pastoral care, psychiatric care).

Expected symptoms of distress^1:

• Concerns about illness
• Sadness about loss of usual health
• Anger, feeling out of control
• Poor sleep
• Poor appetite
• Poor concentration
• Preoccupation with thoughts of illness and death 
• Disease or treatment side effects

Patients at increased risk for distress¹:

• History of psychiatric disorder/ substance abuse
• History of depression/ suicide attempt
• Cognitive impairment
• Communication barriers
• Severe comorbid illnesses
• Social problems
• Family/ caregiver conflicts
• Inadequate social support
• Living alone
• Financial problems
• Limited access to medical care
• Young or dependent children
• Younger age; woman
• Other stressors

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4. How nurses can help at the time of diagnosis

Because of their constant presence at all patient visits, their concern for the total patient, and their opportunity to ask additional questions and to refer patients to appropriate supports, oncology nurses are in a key position to assist patients to identify and manage distress at the time of diagnosis and through treatment.¹ When communication is effective at diagnosis, the stage is set for future positive trusting encounters.

Nurses can help patients cope with their diagnosis through personal interaction and empathy. Social and emotional support should focus on adjustment to diagnosis, apprehension regarding treatment and existential concerns. It is important to ensure that the patient mentally grasps what has been said, and this may be reinforced with drawings or taping the session and giving the tape to the patient.¹

Nurses can use the following strategies to help individuals cope with expected levels of distress:¹

• Explain what breast cancer is and what it isn't - risk factors, hereditary concerns, myths
• Clarify diagnosis, treatment options and side effects and ensure that the patient understands the disease and treatment options
• Acknowledge that distress is normal and expected and inform patients that points of transition can increase distress
• Build trust
• Involve family and significant others in appointments and learning opportunities
• Inform patients of the usual breast cancer journey (Breast Cancer Navigation Map) and the role of the different team members involved in their care
• Mobilize resources and direct patient to appropriate educational materials and local resources (e.g. Breast Cancer Information Kit, support groups, CancerConnection)
• Ensure that the patient knows they can obtain copies of reports and test results
• Encourage patients to record their appointments, tests and results, and information on their diagnosis and treatments in the “Breast Cancer Companion Guide”
• Consider medication to manage symptoms (e.g., analgesics, hypnotics, anxiolytics, antidepressants) and speak with the patient's physicians about these options 
• Suggest family support and counselling
• Encourage relaxation, meditation, creative therapies (e.g. art, dance, music)
• Encourage exercise
• Continued monitoring and re-evaluation are needed to determine if distress symptoms have exceeded expected levels and if a referral to more specialized psychosocial services is indicated. If a patient is experiencing moderate to severe distress, he/she should be referred to a support service such as a mental health professional, counsellor or spiritual care, depending on the issue.

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5. Guidelines for assessing patients from a cultural perspective

Health care practitioners usually do not think of their day-to-day work in terms of cultural transactions .When working with patients it is important to remember that "health care is a social process to which each party – the professional and the patient – brings a set of beliefs, expectations, and practices. Their common task is to negotiate an understanding of the problem, or diagnosis, and decide what to do about it." ⁴

It is impossible and unnecessary to learn about the specific customs and health care beliefs of every ethnic group because people within each ethnic group differ individually even though they share a culture. The nurse who is "alert to cultural differences will more easily find a mutually satisfactory way to achieve compliance or effective treatment with a patient who is more likely to recover and feel satisfied." ⁵

The following guidelines suggest culturally sensitive ways of obtaining information from patients and their families, of negotiating common understandings, and agreeing upon care plans that are consistent with the cultures of both health care professional and patient. By asking questions and making observations with these issues in mind, the nurse may ask a few more questions, and in time "develop a richer and much more useful understanding of the patient’s situation." ⁶ The process of assessment goes on over time. Patients should not be expected to share sensitive information until trust has been established. The timing of questions can be as important as the wording.

Guidelines for Culturally Sensitive Health Care Assessment ⁵

Language and communication:

• Can the patient communicate in English?
• Does the patient understand what is being communicated?
• Is an interpreter needed?
• Does the patient understand what informed consent means?
• Can the patient give consent?

Perception of health and illness:

• How does the family perceive the illness?
• Are there differences in perceptions?
• What meaning does it have for them?
• Do they understand what is happening?
• How does this diagnosis make them feel?

Family decision making and communication:

• Who are the decision-makers in the family?
• How does the family want to handle news, especially ‘bad news'?
• Are there special roles for certain family members?
• Have they shared the diagnosis with others?
• Do they need guidance on how to tell their children?

Expectations about treatment:

• What are the patient’s expectations from the treatment?
• What are the family’s expectations?
• Are there treatments (complementary and alternative medicine) they think would help and do they wish to use other health systems?
• What are their biggest fears?

Experiences with the health care system/ past history:

• What are the patient’s/ family’s past experiences with the health care system in Canada?
• Have they had a previous experience with cancer generally or breast cancer specifically?
•  How was that experience for them and/or their family?
• If an immigrant person, what are their experiences with the health care system in their home country? Are they new to Canada? From where did they come? (Consider history in country of origin – for example civil war, etc.)

Emotional and Spiritual Support:

• Do they have someone close to them that they can talk with about this?
• What does support mean to the patient/ family?
• How does the partner (or spouse) feel about this?
• Are they able to talk with their partner about it?
• What kind of support systems are available to them?
• What gives them strength?
• Is the spiritual dimension meaningful to the patient/ family
• What is the role of professional staff in facilitating this support?

Transition to home:

• For the hospitalized patient going home, certain questions can help the health professional understand the home situation, for example
• Is there anything that stands in the way of your treatment at home?
• Who will be home to help out upon discharge?
• What is the layout of the home like?
• What do they need at home to be able to manage?
• Do they have family and friends living nearby who can give them a hand if they need it (with getting groceries, driving the patient to doctor’s appointments, laundry, etc.)
• Are there issues related to income, job, housing, living or working conditions that could influence recovery/ health that might need to be addressed by a social worker?

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6. Information/ resources for patients after diagnosis

• Breast Cancer Information Kits - Supplied by the Alliance for Breast Cancer Information & Support (ABCIS), these kits are available free of charge to those who are newly diagnosed with breast cancer in B.C. and the Yukon.  
• Breast Cancer Information Kits are available free of charge to patients from:
• surgeons' offices;
• Cancer Information Service at 1.888.939.3333;
• hospital pre-admission clinics;
• chemotherapy clinics; and
• ambulatory care units in regional cancer centres.
  
• BC Cancer Agency Libraries - check the main library web page for more information.
• Canadian Cancer Society’s Cancer Information Service - This is a national, bilingual, toll-free service available to cancer patients, their families, the general public and healthcare professionals. Trained information specialists offer general information on all types of cancer including cancer treatment and side effects, clinical trials, coping with cancer, emotional support services, prevention, help in the community, and complementary and alternative therapies. The service is available Monday to Friday between 9 am and 6 pm in English and French. For other languages, you can access an interpreter service.
• Inflammatory Breast Cancer Information
  • IBC Support
  • Inflammatory Breast Cancer Research Foundation

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7. Emotional supports for patients after diagnosis

• BC Cancer Agency Patient and Family Counselling Services - Professionally trained counsellors provide counselling to individuals, couples and families and practical assistance related to travel, finances and accommodation. As well, programs such as support groups, art therapy, music therapy, and relaxation programs are available at most regional cancer centres and in some community oncology programs. Patients may contact their local cancer centre to make an appointment or to obtain further information
• Canadian Cancer Society CancerConnection - this program matches people with a trained volunteer who has had a similar cancer experience. CancerConnection matches patients based on what is important to them and helps to develop an appropriate peer support plan. Support groups, one-on-one visits and telephone support are utilized by program volunteers. Patients can call 1.888.939.3333 to arrange a connection

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8. Information on practical support for patients after diagnosis

• Coping with Financial Concerns (B.C. version, 2005) -The Willow Breast Cancer Resource Service has developed this comprehensive booklet to assist people to navigate the financial difficulties associated with a breast cancer  http://www.willow.org/info/05.asp
• Canadian Cancer Society – Information on emergency aid programs, transportation and accommodation can be found by calling 1.888.939.3333 or visiting the website
• BC Cancer Agency Patient and Family Counselling Services - Professionally trained counsellors can provide information on practical assistance related to travel, finances and accommodation. Patients can contact their local cancer centre to make an appointment or to obtain further information.

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References:

1. Distress Management: Practice Guidelines in Oncology Version 1.2007, 08-10-06 © 2006 National Comprehensive Cancer Network, Inc.

2. Hewitt M, Herdman, R, Holland, J, editors. Meeting psychosocial needs of women with breast cancer. Washington, D.C.: The National Academies Press; National Cancer Policy Board; 2004; pg. 24.

3. Hewitt M, Herdman, R, Holland, J, editors. Meeting psychosocial needs of women with breast cancer. Washington, D.C.: The National Academies Press; National Cancer Policy Board; 2004; pg. 38.

4. Waxler-Morrison N, Anderson J. Cross-cultural caring: a handbook for health professionals. 2nd ed. Vancouver, BC: University of British Columbia Press; 2005. Introduction, pg. 3.

5. Anderson J. Culturally responsive health care: learning from patients and their families. Rounds presentation for the BC Cancer Agency. May 31, 2006.

6. Waxler-Morrison N, Anderson J. Cross-cultural caring: a handbook for health professionals. 2nd ed. Vancouver, BC: University of British Columbia Press; 2005. pg. 338.