Psychosocial issues faced by women with incurable cervical cancer in India - how can we help?
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0973-1075.19185
Source of Support: None, Conflict of Interest: None
Keywords: cervical cancer, psychosocial, counselling, gender issues
Patients with cervical cancer grapple with difficult psychosocial and sexual concerns. In a Nigerian study Ohaeri et al found that cervical cancer patients had significantly higher scores for psychosocial concerns than patients with breast cancer. Capelli et al measured Health Related Quality of Life in patients attending a gynaecology oncology clinic. Patients with recurrent cervical cancer had worse scores than patients with all other gynaecologic cancers. Jensen et al reported that despite curative treatment the majority of patients with carcinoma cervix experienced persistent sexual dysfunction.
Over the past nine years we have seen 2134 patients with advanced cervical cancer in the palliative care clinic of the Tata Memorial Hospital. The most commonly encountered physical symptoms are pain, bleeding and vaginal discharge.
The majority of patients had already received oncologic treatment. The rest have presented in a very poor general condition. Effective palliation is often provided by a single fraction of radiotherapy delivered usually on a Saturday in a busy radiation facility. A study conducted at the Tata Memorial Hospital showed an average of 51% relief of symptoms for a mean duration of 9 months. A second and even third fraction has been delivered with after an interval of one month with negligible side effects.
Three quarters of all our patients, and half of our ca cervix patients are from out of the city. The remaining are from Mumbai and are placed onto the Home Care Service. In the year 2003, 20% of our home care patients had a diagnosis of carcinoma cervix. [Table - 1]
Home care allows us to assess the environmental, social and economic factors. Caregivers can be trained and empowered to support the patient, promoting compliance. It reduces the need for travel and fosters a close link between the family and the palliative care team. Bereavement follow up and social work can be appropriately used.
Wholistic care mandates the care of psychological suffering and social concerns, which is the focus of this paper. All patients are evaluated for psycho-social suffering with the help of a standard questionnaire. (Appendix 1). The team includes trained volunteers, nurses, doctors, social workers, a stoma therapist, a clinical psychologist and has links to NGOs and voluntary organizations. The trained volunteers enable the patient and family to talk about and think through their situation. Social and financial aid is provided, coupled with an effort to encourage self help to protect the dignity of the family.
Mrs. K. S. a 54 year old lady presented with complaints of profuse bleeding and pelvic pain due to recurrent cervical cancer.
Widowed early, she lived in a slum, along with her two grand daughters, aged ten and twelve. She stubbornly refused to provide her address. We discovered later that she also begged on the footpath, which made her ashamed to reveal her whereabouts. She had felt the need to protect her means of livelihood from the the team.
Her only daughter had an alcohol problem had run away. The patient was very protective of her two grand daughters, keeping them away from their mother fearing the mother would sell them to the flesh trade. Yet at the same time she got them to beg at the Railway platforms and lived off them.
When symptoms became uncontrollable, she finally agreed for inpatient hospice care. This was only on the condition the girls were rehabilitated, with the help of the social worker.
Mrs. P. aged 35, had 5 daughters, the eldest being 13. Her husband had deserted them and remarried. The family was was very poor and was supported by her aged and partially blind father-in-law.
She did not opt for hospice care, as she would be separated from her children. The home care service provided symptom control drugs at home. She accepted her prognosis stoically despite knowing she was dying leaving five young daughters. She felt there was no point blaming her husband.
These case studies highlight common issues faced by our patients- poverty, young children, abandonment by husbands, and the absence of social security. They also illustrate the courage, the resilience and the acceptance with which many such women face distressing situations.
Patients with Ca cervix have specific psychosocial concerns related to sexuality and stigma. They also share the emotional and social issues common to all cancers.
The most common feelings we have heard expressed are:
Anxiety and sadness in 80% at presentation, with the occasional expression of suicidal ideation; guilt and regret for not going to the doctor earlier; Anger directed at doctors for mismanaging their treatment and fear of the future.
Many patients express sorrow and helplessness, at not being able to fulfill their family role. They feel a drain on their meagre family resources. We have been able to rehabilitate some of these families by providing financial help and training with tools for a small trade.
Anxiety about the children's future is often the most overwhelming concern. For younger families we have been able to suggest temporary and permanent shelters, educational aid, job openings or vocational training. With older children guidance for employment is adequate. Trained counselors work with younger patients on a regular basis. Through story telling, art, outings, etc children come to trust the team and gradually express their grief and concerns. Our experience has been that the children of ill people are wise beyond their age and sometimes giving them permission to be children again has really helped. Sibling availability has also been a tremendous help as often there are many children who are close in age.
Family collusion is very strong. Relatives want to protect their loved ones. Two thirds of women have the diagnosis hidden by the family. The husband or elders of the family often assume the woman is incapable of coping with bad news or making decisions. The nurse clarifies the prognosis gradually as she works with patients and families at home.Towards the end of life the prevalence of collusion comes down to about 15%.
The embarrassment and malodour associated with vaginal discharge or urinary incontinence is extremely distressing. Some women express intense worthlessness and helplessness, associated with depression and suicidal ideation. Others are more resilient and accept this as their karma .
Sexual difficulties and fear of being deserted by the husband are important, but often unexpressed concerns. Jensen et al 2003 reported on the prevalence of sexual difficulties in cervix patients treated curatively. Approximately 85% had low or no sexual interest, 35% had moderate to severe lack of lubrication, 55% had mild to severe dyspareunia, and 30% were dissatisfied with their sexual life. A reduced vaginal dimension was reported by 50% of the patients, and 45% were never, or only occasionally, able to complete sexual intercourse. We have come across many women deserted by their husbands because of the illness and sexual difficulties. Other husbands have been supportive and helpful, and the team has tried to help through providing information, practical help and coping strategies
This disease with its associated gynaecologic symptoms is humiliating, and thus not something easily spoken about. In a study from Thailand common psychosocial problems identified were stigmatization from the family and community members, problems with sexuality, and varied belief in meaning and causation of the disease. Conversely, it was possible to cope with many difficulties because of support from husbands, family, and the community.
While working with these patients and their families, we also need to be aware of macro level issues such as poverty, inadequacy of health care services and gender issues such as patriarchy; which contribute to the oppression, submission and exploitation of Indian women.
In our interaction we strive to understand patients through their world view and their interpretation of their situation. We try to make life easier and more meaningful, both psychologically and socially. This can only be made possible if we have adequate time to work with these families. As professionals we need to encourage our colleagues to refer patients sooner rather than later. With the time that is gained, effective palliative care can become a reality.
[Table - 1]