Running head: METASTATIC BREAST CANCER AND SUPPORTIVE CARE 1 What are the Experiences of Supportive Care for Women with Metastatic Breast Cancer? Megan Williams University of New Brunswick
METASTATIC BREAST CANCER AND SUPPORTIVE CARE 2 Abstract Women living with metastatic breast cancer experience high levels of psychosocial distress related to sexuality and intimacy, social support, financial burden, emotional disturbances, disease progression, and survivorship. Psychosocial concerns of women with metastatic breast cancer are not adequately assessed by health care providers which results in under referral to supportive resources. In addition, health care providers have been criticized for disregarding sensitive issues such as sexuality in psychosocial assessment due to personal discomfort and attitudes. Oncology education programs that focus on psychosocial care improve nurses' ability to assess psychosocial needs, navigate women through the health care system, and develop evidence based interventions to improve quality of life in breast cancer patients. Nurse navigators are educators and support patients and their families to improve their cancer experience. They respond to patient care needs, facilitate access to health care services, provide continuous assessment and support breast cancer patients. To enhance survivorship and quality of life, nurses must engage in and maintain effective communication with women living with breast cancer. This engaged relationship encourages open discussion of physical, social, psychological and spiritual needs in all stages of illness. Because each experience of cancer is unique nurses must care for women with breast cancer within the context of their illness state and the meanings they attribute to their experience. Patients and their families have identified deficiencies in psychosocial care. Therefore nurses must examine the effectiveness of current assessment and treatment of psychosocial distress. This paper will seek to answer the question: What are the experiences of supportive care with women living with metastatic breast cancer? Keywords: breast, cancer, women, sexuality, quality of life, nurse
METASTATIC BREAST CANCER AND SUPPORTIVE CARE 3 What are the Experiences of Supportive Care for Women with Metastatic Breast Cancer? Breast cancer is one of the most common cancers occurring among young women and primarily occurs in females aged 50 to 69 (Canadian Cancer Society, 2013). However, in Canada in 2013, 18% of breast cancer cases will occur in females below 50 years of age (Canadian Cancer Society, 2013). Cancer patients have numerous psychosocial needs which change over time as they evolve through complex trajectories and stages of their illness. Surbone et al. (2010) and Watts et al. (2011) describe psychosocial care of cancer patients as being focused on alleviation of psychosocial and psychological distress, delivery of health information and education, maintenance of continuity of care, provision of assistance with financial and child care needs, and support in end of life care. Psychosocial factors that affect quality of life in cancer patients include fear of relapse, assimilation with peers and social networks, and the ability to meet family expectations (Surbone et al.). Bakewell and Volker (2005) noted that women with breast cancer experience additional psychological distress related to body image, sexuality, and infertility. Supportive care of women with metastatic breast cancer is centered on the prevention and management of adverse physical and psychological effects of disease and treatment (Surbone et al., 2010). Specifically, supportive care measures aim to treat psychological and physical symptoms, promote rehabilitation, enhance survivorship, and improve quality of life at all stages of the illness (Surbone et al., 2010). Although health care uses the principle of holistic care to guide clinical practice, elements of holistic care are lost within the health care setting troubled with nursing staff shortages at a time of increasingly complex and acute patient care (Surbone et al., 2010). Patients and their families have identified deficiencies in psychosocial care, therefore
METASTATIC BREAST CANCER AND SUPPORTIVE CARE 4 the effectiveness of current assessment and treatment of psychosocial distress must be examined. This paper will seek to answer the question: What are the experiences of supportive care with women living with metastatic breast cancer? Body Image, Sexuality, Fertility and Emotional Distress Affect Quality of Life Psychosocial care of women living with metastatic breast cancer should address various psychosexual and emotional concerns. Nurses should assess the various element of sexuality, including physical, emotional, and social well-being. Due to continued advances in breast cancer screening and treatment, women with metastatic breast cancer now live much longer after diagnosis (Bakewell & Volker, 2005). However, Bakewell and Volker (2005) and Freysteinson et al. (2012) acknowledge that metastatic breast cancer survivors experience negative side effects of cancer treatment that and have psychosexual needs that affect quality of life. Negative effects of cancer treatment on sexual health include changes in body image and fertility, energy level, discomfort during sexual intimacy and emotional distress (Bakewell & Volker). Through examination of psychosexual health, nurses will discover meanings of sexuality and gain knowledge to inform best care for this population. Nursing care for women with breast cancer should include assessment of the meaning of surgical procedures related to treatment, as surgery to affected breasts and lymph nodes alters body image and results in disfigurement (Bakewell & Volker, 2005; Freysteinson et al., 2012). As nurses assess psychosocial health, they learn the unique meaning of losing a breast, or part of a breast, and the effect that this exerts on women's sexuality. Radiation therapy may temporarily alter body image through producing skin changes such as erythema and burns (Bakewell & Volker, 2005). Bakewell and Volker describe long term physical ailments of radiation therapy to include systemic fatigue and fibrosis of the treated breast and lymph nodes, both of which
METASTATIC BREAST CANCER AND SUPPORTIVE CARE 5 contribute to decreased motility of the arm and limited physical positioning during intimacy. Bakewell and Volker describe side effects from chemotherapy, such as alopecia, pallor, fluctuations in weight, nausea and vomiting, stomatitis, thrush of the mucous membranes, fatique, and vaginal irritation and dryness which alter a woman s sense of attractiveness and energy. In addition, women undergoing chemotherapy are at risk for spontaneous menopause and infertility which may cause significant psychological distress for women of childbearing age (Bakewell & Volker). Lastly, hormonal drug therapy to prevent cancer recurrence such as Tamoxifen has potential side effects that include hot flashes, vaginal discharge, mood swings, weight gain and bone pain, which contribute to a woman s sense of sexual pleasure (Bakewell & Volker). Inadequate assessment of the psychosocial needs of breast cancer patients has been attributed to lack of evidence based interventions and this contributes to the lack of knowledge about the meanings and experiences of women living with metastatic breast cancer (Bakewell and Volker, 2005). Nurses and other health care professionals are reluctant to discuss sexual health issues and women may not address the topic as they feel as though it is not an important aspect of their medical care (Bakewll & Volker, 2005). Freysteinson et al. (2012) describe the benefits for the patient when nurses discuss patients' expectations, fears, and anxieties about treatment outcomes. Bakewell and Volker also identify the essential role nurses play in the delivery of education, support, and encouragement to women who experience body image distress. Communication, Navigation, and Continuity of Care Effective communication is a critical requirement of quality holistic care and necessary to understand the meanings and experiences women living with metastatic breast cancer possess.
METASTATIC BREAST CANCER AND SUPPORTIVE CARE 6 Sheldon et al. (2012) outline the importance of effective communication between patients and nurses to encourage discussion of psychosocial concerns. Korber, Padula, Gray and Powell (2011) describe how differences in physician and patient knowledge, attitudes, beliefs and behaviours act as barriers to the completion of breast cancer treatment courses. Communication skills, income, health insurance, education, competing life demands, transportation, language, literacy, and culture are patient factors that influence treatment completion rates. The nurse navigator role has been introduced into ongology care to facilitate access to supportive resources and provide supportive care to meet the psychosocial needs of the population.(korber et al.; Watts et al., 2011). Nurse navigator programs focus on personalized education, counselling, and assessment of psychosocial needs and physical symptoms for breast cancer clients (Mehta and Hamel, 2011; Korber et al.; Watts et al., 2011). In addition, nurse navigators offer patients the opportunity to explore their concerns and preferences regarding treatment options (Korber et al.). The role of the nurse navigator was designed to maintain communication between the patient and the health care team and provide an avenue to advocate for patient (Korber et al., 2011; Mehta & Hamel, 2011). Effective communication between the patient and the nurse reduces depressive symptoms, anxiety, and risk of suicide in patients who experience psychological distress (Korber et al.; Melchior et al., 2013). Given this, the nurse navigator role plays an essential role in detection of changes in mood and communication of these concerns to the rest of the health care team. Survivorship, Self-efficacy, and End of Life Care In order to assist patients living with metastatic breast cancer to achieve a state of survivorship, health care providers must understand the unique meanings that each patient attributes to their of breast. Survivorship focuses on the patient s health and quality of life post
METASTATIC BREAST CANCER AND SUPPORTIVE CARE 7 treatment until end of life; it is different for every breast cancer patient, is related to individual and societal variables including age, socioeconomic status, family support, community resources, and culture (Surbone et al., 2010). Nurses must seek to understand patients experiences of their illness and survivorship in efforts to match patients' unique psychosocial needs with supportive care interventions (Surbone et al., 2010; Wanchai, Armer and Stewart, 2011). Nurses enhance quality of life and survivorship with both pharmacological and non-pharmacological interventions to address psychosocial needs such as physical symptoms (i.e., nausea, vomiting, decreased appetite) and emotional symptoms such as provision of emotional support and counselling for stress management, teaching relaxation techniques, and facilitating access to supportive services (Wanchai et al., 2011). Phenomenological findings on the meanings of women s lived experiences with metastatic breast cancer note inadequate psychosocial support as a barrier to effective coping and preparation for death (Chunlestskul, Carlson, Baker, Koopmans & Angen, 2008). Women describe the need to be confronted with their feelings about disease progression to prepare for death and to examine their strengths, fears, and available resources for support (Chunlestskul et al., 2008). Chunlestskul et al. (2008) report that high levels of self-efficacy are positively correlated with lower levels of fear about cancer progression and death. Given this, psychosocial assessment of fear of disease progression and death should be implemented at the time of diagnosis to enhance self-efficacy and develop effective coping mechanisms to deal with death (Chunlestskul et al.; Melchior et al., 2013). Supportive care aims to alleviate physical, psychological and spiritual suffering and offers competent, compassionate care during the dying and grieving process (Surbone et al., 2010). However, evidence suggests that women are not
METASTATIC BREAST CANCER AND SUPPORTIVE CARE 8 having their supportive care needs met, as nurses have been described as attempting to console patients and avoiding the topic of death (Surbone et al., 2010). Conclusion Women living with metastatic breast cancer possess unique supportive care needs. However, their psychosocial concerns are not consistently addressed by nurses due to ineffective communication between the patient and the nurse and the lack of knowledge and understanding of the experiences of women living with metastatic disease. In addition, inadequate and incomplete assessment, guidelines, and evidence-based interventions contribute to diminished quality of psychosocial care. In order to meet the needs of this population, psychosocial assessment must be implemented at the time of diagnosis and continued throughout patients' cancer trajectories. The development of psychosocial oncology programs provide education for nurses and health care professionals and increase their skills required to care for oncology patients and enhance quality of life. In addition, the implementation of nurse navigator programs can enhance quality of life in metastatic breast cancer patients as the navigator nurse ensures continuity of care and facilitates access and care throughout the health care system and services, provides education and counselling to clients, and engages in effective communication. For nurses to adequately assess psychosocial needs of breast cancer patients requires reflection on their own biases, values, and attitudes towards uncomfortable topics such as sexuality and death. Lastly, nurses must appreciate that experiences of metastatic breast cancer are unique to patients, as they attribute meanings to their illness states. To adequately address psychosocial concerns nurses must view breast cancer through the lens of the patient. This perspective will assure the nurse provides the highest level of quality supportive care, advocates for their needs, ensures access to supportive resources, and maintains continuity of care.
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