Palliative care in advanced gynecological cancers: Institute of palliative medicine experience
Aim: To study the epidemiological profile, clinical symptoms and referral patterns of patients with gynecological malignancy. To evaluate pain symptoms, response to treatment and factors affecting management in patients with advanced gynecological malignancies.
Keywords: Gynecological cancers, palliative care, pain management, pathways to care, symptoms
Gynecological malignancies are of concern for several reasons. Foremost among them is the very high incidence of these neoplasms in developing countries. Patients with advanced, recurrent and metastatic gynecological malignancy constitute a diverse population with varied symptoms. Aggressive curative intervention in these patient groups is not always possible.
The referral for gynecological cases requires awareness, a common philosophy, effective communication and the combined observation of a gynecologist, surgical oncologist, medical oncologist, radiation oncologist, palliative care specialist, psychiatrist, physiotherapist and a nurse. In addition to this, community support and coordination with the home care team are essential for the complete care of such patients. Inadequate symptom control and failure to address issues have been identified as shortcomings in the care of the dying. , Individualized palliative care that balances benefits, expected duration of palliation and probable toxicities related to treatment is essential.
Despite a steady improvement in the management of pain in patients with terminal disease, a vast majority still suffer a painful death. Patients with advanced gynecological cancer have difficult psychosocial and psychosexual concerns. Ohaeri et al.  found that cervical cancer patients had significantly higher scores for psychosocial concerns, suggesting the greater need for supportive intervention in these patients. Paucity of Indian data regarding such important issues prompted the conduct of this study.
Aims and objectives
To study the epidemiological profile and clinical symptoms of patients with gynecological malignancies presenting to the Palliative Care Clinic and analyzing the referral pattern of patients with gynecological malignancies to the Palliative Care Clinic. To evaluate the pain, its response to treatment and factors affecting management in patients with advanced gynecological malignancies.
The study was conducted in the Pain and Palliative Care Clinic, Medical College, Kozhikode, between January 2006 and December 2006. One thousand eight hundred thirteen patients attended the Pain and Palliative Care Clinic, of whom 64 were diagnosed with advanced gynecological cancer and referred for pain and other symptom control.
A retrospective analysis of 64 patients of gynecological malignancies registered in the Pain and Palliative Care Clinic during the period January-December 2006 was carried out. The patient profile, clinical symptoms, referral pattern, treatment and response to pain and factors affecting the response were studied in detail.
Pain management was performed according to the WHO analgesic ladder and assessed for response by clinical assessment. All patients who did not have complete pain relief were categorized as partial response to therapy. The various factors for partial pain control were studied. Appropriate symptomatic treatment was offered along with supportive palliative interventional techniques.
A total of 1813 patients attended the Pain and Palliative Clinic, of which only 64 patients had gynecological cancer. Nearly half of the patients (30/64) were in the fifth and sixth decade of life. Of the 64 cases, 32 were carcinoma of the cervix, 27 were carcinoma of the ovary, four were carcinoma of the endometrium and there was one case of carcinoma of the vagina [Table 1]. More than half (59%) were from a lower socioeconomic background.
Patients were frequently referred from oncology services (41/64 patients). Others came referred in by the community workers (16/64 patients). Hardly any of the patients came referred from gynecology (2/64 patients).
Ninety-five percent of the patients had experienced some form of oncological treatment in the form of surgery, radiotherapy, chemotherapy or a combination of these.
Fifty-five percent of the patients were unaware of the diagnosis at presentation as families had withheld this information from the patient fearing an inability to cope with the news. Financial problems necessitating support was evidenced in 42% of the patients.
A psychosocial problem in the form of anxiety about the illness or lack of family support was seen in 48% of the patients. Inpatient care was offered to 39% of the patients (25/64) at the Institute of Palliative Medicine, Calicut.
Ninety-five percent of the patients (61/64) presented with pain. The remainder (3/64) had mild pain. Pain was mostly in the lower abdomen and lumbar region. Twenty-six had moderate pain and 22 patients had severe pain at presentation. Nausea, vomiting and loss of appetite were reported by 80% (51/64) of the patients. Constipation was observed in 51% and all responded well to laxatives. Insomnia was observed in 52% of the cases.
Three-quarters of the patients presented with bleeding per vaginum (PV) and foul-smelling vaginal discharge. Of these, two had vesicovaginal fistulae and one patient had a rectovaginal fistula. Unilateral lower limb swelling was seen in 10% of the patients who presented to our clinic. Urinary symptoms were noted in 35% (23/64) of the patients due to extension of the tumor to the bladder. The most common symptoms reported were frequency of micturition, dysuria and hematuria.
Abdominal distension was observed in 18 patients, of whom 15 had marked ascitis requiring peritoneal tapping. Adequate pain relief was obtained in only 22/64 patients. Because this was a retrospective study, the rest were considered to have had partial pain control.
Partial response was observed in 39 patients. Of these, 14 patients were referred to a link center after initial assessment and analgesic prescription for ongoing management, two patients refused morphine secondary to anxieties related to the fear of addiction, six patients continued to be on step-2 analgesics despite inadequate pain control, four patients had poor drug compliance and did not take the medication in the prescribed dosage, six patients had irregular follow-up and did not turn up for review for reassessment and seven patients were lost to follow-up after the initial visit.
Thirteen patients suffered a terminal event. Of the 10 patients of carcinoma of the ovary who died of metastatic disease, five patients died of lung secondaries or pleural effusion, four patients had progressive ascitis and resulting intestinal obstruction and one patient died of brain metastasis. Death due to obstructive uropathy and renal failure was observed in two patients of carcinoma of the cervix and one patient died of carcinoma of the vagina without a diagnosed cause of death.
Our patient population was mostly in the fifth and sixth decades of life from a lower socioeconomic status. Collusion by the family appeared to a significant finding in our study, as 55% were not aware of the disease at presentation. This is in keeping with similar findings elsewhere within a similar culture where Muckaden et al. affirm that two-thirds of the women had the diagnosis hidden by the family. The caregivers often assume that the woman is incapable of coping with bad news or making decisions. 
The stress associated with advancing and incurable illness inevitably causes distress to patients, families and caregivers. A palliative approach to care aims to improve the quality of life for patients with a life-limiting illness by reducing suffering through early identification, assessment and optimal management of pain, physical, cultural, psychological, social and spiritual needs.
Forty-eight percent of our patients experienced psychosocial problems in the form of anxiety about their illness and lack of adequate family support thus emphasizing the need for addressing these issues. Ratnasirif et al. have already commented on the difficulties in providing support for the dying patient with gynecological symptoms. 
Insomnia was seen in a significant proportion of patients (52%). This finding confirms the observation reported earlier by Roth et al ., which concluded that the most common causes of insomnia in terminally ill patients are depression, anxiety, pain, nausea, vomiting and fatigue. 
The nature of sleep disturbances in palliative cancer patients has not been studied carefully or clearly understood due to limited clinical information. Sela et al. studied sleep disturbances in palliative care patients attending a pain and symptom control clinic and concluded that routine clinical evaluation and assessment need to be carried out to detect sleep disorders prevalent among terminally ill patients. This could then guide efforts to provide appropriate intervention and improve sleep quality. 
Pain was the most common symptom at presentation. Our study noted 48/64 patients presenting with moderate and severe pain. However, only 22 patients achieved complete pain relief. The rest (39 /64 patients) were categorized to have partial pain relief. Fourteen patients who had partial pain relief were referred to other palliative care clinics for follow-up before achieving adequate control of pain. We observed that the most common problems affecting effective pain relief involved irregular follow-up (six patients), poor drug compliance (four patients), inadequate pain assessment (six patients), lack of awareness about morphine therapy and fear of addiction in a small number of patients (two patients).
Lack of awareness among women, especially those belonging to disadvantaged sections of society, contribute to the poor attendance at palliative care clinics. They are often dependent on the male members of the family for transportation and communication and the men folk are not always available.
Financial dependence for treatment, hospitalization, investigation and management could be another reason for poor attendance.
Our study concludes that there is a great clinical need for palliative care for patients with late presentation or recurrent disease because of the myriad problems faced by patients suffering from gynecological cancers. The number of patients attending pain and palliative care clinics is significantly low as compared with cancers at other sites. Awareness among the community workers and health care professionals working in medical colleges about palliative care facilities should be raised so as to make the services prescribable to a larger group of patients in our clinical practice.
Pain is the most common and often most distressing symptom. A large number of patients got only partial relief. The causes were poor drug compliance, irregular follow-up, incomplete pain assessment or optimization of analgesics and low awareness of morphine therapy. These are all issues that are amenable to correction with resulting good outcomes with regard to pain control.
Psychosexual aspects have largely been overlooked and not assessed in patients presenting with advanced gynecological cancer. This issue needs to be addressed.
Our data has several limitations. The small number of patients and a limited time period renders the interpretation difficult. Well-designed, prospective clinical trials are required to further increase knowledge in this area.