Situated on Hali Road the peaceful backwater of Karachi is Rahatkada, Pakistan’s first hospice established in September 1991 by the Medical Aid Foundation (MAF). Since its inception, the 25 bedded center has provided refuge to hundreds of terminally ill patients. Focusing on palliative care as it does, Rahatkada’s raison is to relieve the suffering of patients who have life-limiting diseases, especially cancer.
Dr. Saira Khan, MAFs founder-director who had been a regular visitor to the oncology wards of government hospitals was appalled by the conditions of patients with advanced stage cancer. Most of them came from lower-income groups and their families did not have the means to provide for their needs as they thus conceptualized a palliative care centre that would help improve the physical and psychological well-being of dying patients.
To being with, one found it difficult to come to terms with the very idea of establishing separate centers for dying patients (hospices). One entered Rahatkada with painfully disturbing thoughts: why can’t we integrate palliative care into public health care system? Imagine the psychological distress of a patient who knows that doctors have given up all hope on him and he is being transferred to a home for the dying. Wouldn’t he be better off (at least emotionally) in a normal hospital?
Dr. Khan listens patiently to these reservation and replies: “My initial suggestion was setting up of early detection, treatment and palliative care units in government hospital but it could not materialize due to scanty budgets ear-marked for health.” Moreover, Dr. Saira goes on to add, cancer has not even been included in primary health problems. “We can’t leave the dying patients to fend for themselves as they writhe and suffer.”
Dr. Saira doesn’t believe in discussing death with the patients. Instead she and her colleagues try to cheer them up and boost their will to live. Additionally, a majority of the patients are illiterate and do not know what advanced stage cancer entails and what it means to be in a hospice.
Abdullah, a 27-year-old Afghan national, is suffering from thyroid cancer and stands a very slim chance of survival. He was referred to Rahatkada from Civil Hospital where he had been operated upon with out any improvement in his condition. While his distressed brother stands by his side, Abdullah lies contently in his bed with a broad smile on his face as if he were dreaming of another life. In another ward there are women as young as 30 suffering from oral, cervical and breast cancers.
“You never know how long a patient is going to live, reminisces Dr. Khan “We had this throat cancer patient Suriya Begum, who we all thought would die in a month’s time but she went on to live for six year.”
The Cornerstone of Rahatkada’s services is controlling pain and other symptoms associated with advanced stage cancers. Some patients have excessive bleeding while others have festering wounds that need regular dressings. All of them need proper diet, a clean environment and constant medical attention.
“Once a patient’s condition stabilizes he is sent home if he so desires,” informs Dr. Khan. “In such cases, we make sure that the patient continues to make a proper diet and necessary medication; for this Rahatkada provides financial assistance to needy families.”
Although Rahatkada is primarily a hospice, it also offers chemotherapy to out-patients. All resident patients are given pain-alleviating chemotherapy. Doctors, nurses and a team of dedicated volunteers work scrupulously round the clock to attend to the needs of the patients and maintain a home-like environment.
“Husbands often abandon their wires when they are diagnosed for cancer,” says Dr. Khan adding that people often leave their parents at Rahatkada because they can not take time out of their busy life-styles to look after them. “Of course not all families behave like this,” Dr. Khan hastens to add, “We had a woman patient whose son stood by her side till the end and made it a point to do her dressings himself.”
Rahatkada is run on donations that come in the form of Zakat and proceeds from fund-rasing activities. Sadly, however, the centre has not sometimes a patient may be the sole-earner of a family and in such cases Rahatkada takes it upon itself to provide financial support to he dependents.
“We do not lose contact with the families after the death of a cancer patient,” says Dr. Khan adding that Rahatkada establishes a relationship with patient’s families that lasts forever.
The potential sources of suffering for patients with advanced disease are not limited to pain and physical symptoms. Rahatkada’s staff concern themselves with the question as to how psychological and psychiatric symptoms as well as existential distress, also can result in suffering. Anxiety, depressing and cognitive impairment are common characteristics among patients with advanced cancers but can be difficult to recognize and manage without specialized knowledge. The problem is addressed through a multidisciplinary approach to patient care that incorporates mental health and pastoral care interventions.
Sometimes, in the face of callous attitude shown by the families towards patients, Rahatkada has the added responsibility to provide much needed emotional support received and support, financial or otherwise from the government. The ever-increasing costs of chemotherapy call for a constant inflow of funds which are not easy to come by:
Dr. Khan believe that Rahatkada has also made space in government hospitals for taking in patients who stand a better chance of living by timely treatment and radiotherapy courses.
While Medical Aid Foundation plans to establish a new 100 bedded palliative care unit on the lines of Rahatkada, it has intensified its activities to create awareness about cancer and provide early detection methods. Many patients end up at Rahatkada because they report to hospitals too late in the day, when cancer has spread to the whole body and treatment is no longer possible. With increased awareness and easy access to diagnosis facilities, the majority of cancer patients could be effectively treated.
Medical Aid Foundation had taken a much-needed initiative but it needs solid public and institutional backing to sustain its services. Confined to out little cocoons as we are, the problem may seem too remote to us. But we would do well to remember that cancer can strike. Anyone at any age. |
