A Medical Specialty Yet to Be Formally Recognized in Pakistan
Like many others when I first heard about palliative care, I had no idea what it meant. In Pakistan, the concept of palliative care is yet to be recognized. But soon after researching, I found out that this is an important multidisciplinary approach, which provides specialized care for patients suffering from life-limiting diseases. Palliative care can occur at the same time as curative or disease-modifying therapy.
The World Health Organization (WHO) defines palliative care as an approach that improves the quality of life of patients and their families who are suffering from a life-threatening illness through the prevention and relief of suffering utilizing early identification, assessment and treatment of pain and other problems — physical and psychosocial. According to WHO, every year, an estimated 40 million people require palliative care, 78% of whom live in low and middle-income countries. The global need for palliative care will continue to grow as a result of increasing population and the rising burden of non-communicable diseases and some communicable diseases.
In 2014, WHO adopted Resolution WHA67.19 urging member states to integrate palliative care into their national healthcare system, across all levels, with emphasis on primary, community and home-based care.
The Palliative Care Team
Palliative care requires a multidisciplinary team of doctors, nurses, psychiatrists and therapists, physiotherapists and consultants devoted to improve the quality of life of the patients and their families.
Nurses manage most of the patient’s ongoing care and treatment during palliative care in the hospital and they can also provide care at home. They assess, plan and administer daily treatment to manage the illness. The purpose is to enhance the comfort of the patient by offering pain management, therapy and counselling by specialists.
Diseases Requiring Palliative Care
Palliative care is required for a wide range of diseases. The majority of adults in need of palliative care suffer from chronic diseases. Pain and difficulty in breathing are two of the most frequent and serious symptoms experienced by patients in need of palliative care. 80% of patients with AIDS or cancer and 67% of patients with cardiovascular disease or chronic obstructive pulmonary disease will experience moderate to severe pain at the end of their lives.
According to American Heart Association, integrating palliative care in managing advanced cardiovascular disease may be useful to improve the patient’s understanding of the disease, treatment, prognosis and symptoms. It also helps to improve shared decision-making based on patient values, preferences and goals, enhanced patient-clinician communication, individual advanced care planning based on benefits, risks, improved preparation for end-of-life, associated care and bereavement support.
Pain, nausea, vomiting, fatigue, anxiety, depression, constipation, diarrhea, confusion, and shortness of breath are the most common symptoms associated with cancer and its long-term treatment including surgery, radiation therapy, and chemotherapy. Palliative care not only includes relieving the symptoms and stress, but can also help with other situations, such as feeling overwhelmed by the complicated medical information and important treatment decisions.
Chronic Respiratory Diseases
Palliative care can offer symptom management in patients with chronic respiratory diseases with symptoms of breathlessness, fatigue and anxiety. Coordination of care and advanced care planning is also important at every stage and not just at the end.
According to American Stroke Association, for stroke patients and their family, palliative care collaborates between patients, families, a stroke team, and various healthcare providers, including neurologists, neurosurgeons, primary care providers, nurses and therapists.
Stroke patients suffer from physical distress, i.e., fatigue and restlessness, and emotional distress. Palliative care can help explain whether these symptoms along with memory, speech or visual problems will be permanent. Palliative care specialists can use medicines and other therapies to help patients with depression or anger, which are common after a stroke.
Many other conditions may also require palliative care, such as kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological disease, dementia, congenital anomalies and drug-resistant tuberculosis.
Palliative Care: A New Concept in Pakistan
Dr. Cicely Saunders established the discipline and the culture of palliative care. She first articulated her ideas about modern hospice care in the late 1950s, based on her careful observation of dying patients. She advocated that only an interdisciplinary team could relieve the “total pain” of a dying person.
A major effort to bring palliative care into mainstream medicine was launched with the support of Robert Wood Johnson Foundation and George Soros’ Open Society Foundations. The ratio of palliative services in Pakistan in relation to population is 1:90 million. Furthermore, the burden of chronic illness in Pakistan is very high. According to the Global Burden of Disease Study (GBD) 2010, it is estimated that by 2025, there will be 3.9 million deaths in people aged between 30 to 69 years in Pakistan due to non-communicable diseases including cardiovascular diseases, respiratory diseases, cancer, diabetes mellitus, and mental health illnesses. Furthermore, lack of resources, lack of awareness and other challenges delay the growth of palliative care in Pakistan.
We are well aware of the biggest fact of life that every living being has to die. And looking after people with terminal illness is a challenge for the family and healthcare professionals. In our society, medical decisions are often made by the family and not by the patient.
There are only a few healthcare facilities that are providing palliative care services. Shifa International Hospital has an established palliative care department. According to a palliative care consultant Dr. Aqdas Kazi, palliative care was recognized as a distinct specialty in 1987. To become a palliative specialist a certificate is required from the Membership of the Royal Colleges of Physicians of the United Kingdom (MRCP). She says that training for palliative care is not available in Pakistan because palliative medicine is not a recognized discipline. She also says that there are three domains of palliative care, first hospital-based, second outpatient clinics and third homecare. Good palliative care reduces the duration of a patient’s hospital stay and reduces the number of visits to the Emergency.
According to WHO, chronic diseases are the major cause of death and disability worldwide. In Pakistan, chronic diseases are projected to account for 42% of all deaths. Although family-based culture and a strong religious belief system may be providing psychosocial and spiritual support, yet palliative care services, pain/symptom management and trained healthcare professionals can help terminally ill patients. HH
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