It is a misconception that palliative care deals with death. On the contrary, it deals with ‘Life’. The ‘Journey of life’ passes by many stopovers and stations, with death being the last ultimate destination. Death is no doubt the ultimate truth of our life. But making this journey peaceful and gratifying is an important dimension which a medical care facility should take care of.
Here lies the importance of palliative care. Whenever this journey becomes shaky or turbulent, palliative care comes into the picture. The philosophy of palliative care emerged with Cicely Saunders' vision for ‘a good death’. In essence, palliative care is medical care focused on improving quality of life of patients and their families.
Palliative care also focuses on improving planning and communication among the care team (patient, family, and medical staff), and addressing emotional and spiritual needs.
The emphasis is on managing pain and other symptoms such as nausea, insomnia, fatigue and reduced appetite. Palliative care also focuses on improving planning and communication among the care team (patient, family, and medical staff), and addressing emotional and spiritual needs.
A patient may receive palliative care at any stage of the disease, and continue for many years. Ideally, it should be started when a person is diagnosed with a chronic or terminal illness, and goes beyond the patients’ death, with bereavement care and support for the family. It may also be combined with treatment designed to cure illness or prolong life.
A palliative care consult can be done in the hospital or the outpatient clinic. It is intended to support your care in all areas employing a team-based approach. The team will include the patient and the patient’s family, current doctor and care providers, and specialists in palliative care. Palliative care specialists can address the more complex problems that come with a serious illness. The incidence of cancer and chronic diseases are increasing day by day, and so is the number of terminally ill patients with poor quality of life.
Good quality of life and death with dignity are considered as basic human rights.
Less than 3 per cent of India’s 1.38 billion population has access to palliative care. The Indian Council of Medical Research has recently projected that India is possibly looking at over 17 lakh new cases of cancer and over 8 lakh death related to the disease by the year 2020. Good quality of life and death with dignity are considered as basic human rights. Pain-free end with dignity is a fundamental right of a patient.
Other conditions with palliative care needs are — AIDS, muscular dystrophy, dementia, multi-organ failure, Alzheimer's, Parkinson's disease, end-stage renal disease, heart diseases, those who are permanently bed-ridden and people with neurological problems.
So, providing a good palliative care to all terminally ill and chronic patients is a moral responsibility of medical fraternity. In India, besides increasing the number of trained human resources, awareness level regarding palliative care among general population needs to be improved.
Department of Palliative Medicine at AIIMS, strive to deliver holistic care to patients and their families. AIIMS has started M.D. program for specialisation in Palliative Medicine, with an intake of 6 students per year. Patients attending Pain OPD are screened on each visit about social and psychological factors associated with pain and other symptoms.
If any patient is unable to visit the hospital due to disease or debility, an NGO based ‘home-care’ palliative care team is deployed to visit the patient at home.
A 24-hour helpline number, operated by a senior resident doctor or consultant, is provided to all patients for telemedicine family conference or consultation to contact out-of-hours, particularly during initiation of treatment or for palliative care counselling during the last phase of life. A patient may be admitted for emergent management of acute or severe pain, by titration of opioid therapy using intravenous or immediate-release oral morphine and adjuvant analgesics and adjuvant drugs.
If any patient is unable to visit the hospital due to disease or debility, an NGO based ‘home-care’ palliative care team (including a doctor, a nurse and a social worker) is deployed to visit the patient at home.
Department is a unique example of Integration of Pain and Palliative care services to improve quality of life of patients. Department has dedicated facility to provide neurolytic blocks at any stage of the disease early or late or wherever it is beneficial for the patients.
Apart from Pain management, treatment of other symptoms form an important component of palliative care.
Apart from pain management, treatment of other symptoms form an important component of palliative care. Patients are admitted to ward for ascitic or pleural fluid tapping or pig-tail insertion. Appropriate candidates are offered pleurodesis. Conservative management of intestinal obstruction, dyspnoea, increased ICT, fungating wounds, colostomy care, intractable nausea and vomiting can be a challenging task.
Principles of the end of life care practised extremely well by giving honest information, realistic hope. The patient is given information about futile treatment well in advance. This gives him an opportunity to make informed choices of the treatment.
At AIIMS, palliative care is provided by the multidisciplinary team, where all the oncologist, physiotherapist, dietician come together to make an appropriate treatment plan. Teaching and training department is conducting a basic course in essentials of palliative care twice in a year, in the month of June and November, besides yearly foundation course in palliative care is also provided to observers coming from India and abroad.
Counselling is another crucial aspect of palliative care which should be addressed along with any other form of therapy. We believe that the counselling and empathy delivered by the palliative care physician along with a holistic understanding of each component (physical, psychosocial, emotional and spiritual) of ‘total pain' is unmatchable.
Essentially, the primary aim is to rehabilitate and empower the patient and caregivers to be able to live, or die, peacefully and be cared for at home. In conclusion, palliative care is a form of justice to the patients who are in agony. This justice should be delivered to every patient.