With Brazilian soccer icon Pele being recommended palliative, end-of-life care, to help him deal with his pain and shortness of breath as chemotherapy and invasive treatments are not positively affecting his colon cancer anymore, concerns have arisen as to what it means. Often patients feel better as their symptomatic conditions are addressed and as Pele himself posted on Instagram, he is feeling “strong.”
There is a misconception that palliative care means the patient will die soon. But it is not care only for bed-ridden patients. It is an important protocol that is included along with treatments to slow, stop or cure cancer or chronic infections (HIV, drug-resistant TB and leprosy), chronic cardiac ailments, renal and liver failure and neurological conditions (stroke, sclerosis). The therapies and care are focussed on providing relief from the symptoms and stress of the illness. The goal is to improve the quality of life for both the patient and the family.
Says Dr Jayarajan Ponissery, Palliative Care Consultant at PD Hinduja Hospital and Medical Research Centre, Mumbai, “Palliative care is provided by specially-trained medical personnel, including doctors, nurses and other specialists who work together with a patient’s regular doctors to provide an additional support mechanism. It is based on the immediate needs of the patient and does not depend on prognosis. It is aimed at improving the quality of your life and that of your family members as well and make the condition as painless as possible. It can be provided to patients at any stage during their illness. In fact, many patients, on learning they have cancer, sign up for this kind of care through treatment and recovery. For example, cancer survivors, who have ongoing or new symptoms or side effects after treatment is completed, may receive palliative care. But it is mostly given to patients as end of life care. Their physicians refer to us when they start showing associated symptoms like excruciating pain, breathlessness and vomitting among others.”
WHAT CARE SERVICES MEAN?
The care involves focussing on providing relief from symptoms and stress of the illness. Symptoms may include pain, depression, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping and anxiety.
For the last 22 years, Dr Minni Arora, a palliative care physician in the Chandigarh Hospice and Palliative Care Services, Sector 43 A, has been working with a team of doctors and community workers to provide services to terminally ill cancer patients, who needed pain management and supportive care. Since 1998, the Palliative Outpatient Clinic functions in the Radiotherapy Department, PGI from Monday to Friday, with the UT Red Cross deputing a specially trained doctor and a nurse. A psychologist has also volunteered services. “It is paramount that we provide quality of life, care and comfort to patients and understand their physical, emotional, psychological and spiritual needs. So palliative care stresses on holistic management of the condition,” explains Dr Arora, who works closely with Dr Neeru Anand, in charge of the Chandigarh Hospice.
“We need to understand why a patient is having a problem which can also be related to his psychology,” adds Dr Ponissery.
WHY COUNSELLING IS IMPORTANT FOR CAREGIVERS TOO?
More importantly, caregivers in the family of these patients, who are in agony and distress, also need understanding and empowerment. “A patient and a caregiver are a unit. We listen to the caregivers, address their concerns and fears about the disease, and assure them that we are there for them,” adds Dr Arora.
Many caregivers, especially from rural areas, explains Dr Anand, are unaware of how to take care of a patient at home. “So the focus is to help them understand how to do basic dressing, change the airway tube, and take care of the pain and emotional needs of the patient.”
When terminally ill patients are in pain, agony and unable to attend the hospital, it is important for the medical team to visit their homes to take care of them, so that the family doesn’t feel abandoned by the health system. “Continuity of care is an integral element in palliative care as nuclear families are the norm and the support system of the joint family is on the decline,” says Dr Arora.
Besides, there are case-specific scenarios that demand customised attention. “Many terminally ill patients are sole bread-winners and the resultant worries further compound their crisis. Patients get agitated and even aggressive, so the families have to be trained to deal with them. Palliative care doesn’t end with patients but to their families, even in their absence,” says Dr Ponissery.
THE COST OF CARE
As most patients are given palliative care at home, in 90 per cent of the cases, their expenses aren’t covered under medical insurance. “But the treatment cost is much lesser than chemotherapy and/or neurological treatments. We keep the treatment simple and provide symptom-based medications,” says Dr Ponissery. Services provided are pain relief therapy, post- chemotherapy management, post-radiotherapy management, surgery care and wound management, psychiatric counselling and physiotherapy among others.
“We make an effort to provide financial and educational support to families, who have exhausted their means in treatment. The aim is to empower caregivers and to let the patients be in comfort and pain-free in the last days of their lives. Palliative care not only provides medical and nursing care to patients in a homely atmosphere but also saves acute bed occupancy in active treating hospitals,” says Dr Arora.
WHY PALLIATIVE CARE WORKS BEST FOR CANCER?
Some cancer patients, feels Dr Arora, may need institutional care at the end stage of their illness and instead of admitting them to busy, acute care hospitals, they require a care unit that combines the skills of a hospital with the hospitality and warmth of a home. This system, she adds, needs to adjust to the needs of the patients and their caregivers. “The patient receives the care of the oncologist, radiotherapist and palliative care therapists. This team effort gives the patient confidence, peace and hope,” shares Dr Arora.