A Guide to Palliative Care

Palliative Care is a much needed option when it comes to severe pain management. Silver Talkies brings you a small guide.

Inside Karunashraya

Walking around Karunashraya in Whitefield, Bangalore, is a humbling experience. Quietly dignified in its calmness, Karunashraya, a Palliative Care Centre run by The Bangalore Hospice Trust, is truly an abode of peace and dignity for many terminally ill cancer patients. “Our ultimate daim is to help patients live without pain and in dignity and peace until the end,” says Dr Nagesh Simha, Medical Director and Chairperson of Bangalore Hospice Trust. In fact, as you listen to him, you realize the importance of palliative care in making extreme pain bearable. Silver Talkies spoke to Dr Simha, Harmala Gupta of CanSupport, Delhi, Dr Abhijit Dam of Koshish Hospice, Jharkhand, Dr Edassery Divakaran of Pain and Palliative Care Society, Thrissur and other professionals working in the field, to offer you some insights on this noble form of care.

What is Palliative Care?

Harmala Gupta, a cancer survivor and founder of CanSupport, Delhi, says, “palliative care focuses on the ‘total’ needs of a patient with a life limiting disease or condition such as cancer. It includes good symptom control, skilled nursing and psycho-social support. It should ideally start from the time of diagnosis onwards and is best delivered by a trained team.” Often, it may also include providing patients with free medicines and equipment, rations and a livelihood. “We have on occasion facilitated the adoption of young children. Spiritual support also becomes important at the end of life as people wrestle with questions related to their mortality and reflect on their lives and relationships,” Ms Gupta adds.

Palliative care originated in UK with the founding of the St. Christopher’s Hospice in 1967 by Dame Cicely Saunders. Simply put, its goal is to relieve suffering (pain management) and improve the quality of life for the patients. “It should not be dependent on prognosis and should be offered along with all other forms of medical treatment,” Dr Simha adds.

“Palliative care produces symptom relief. The mainstream medicine with its focus on ‘cure’ generally ignores the distressing symptoms of the disease. As palliative care address the total illness experience of the patient, symptom relief is a major component of any palliative care service. Another one is emotional and social support. Patients realize that that are not alone in their illness journey. This gives them the strength to face the inevitable reality with calm,” adds Dr Divakaran mentioning why it is advisable.

In other words, palliative care is multi-disciplinary care that involves family members, volunteers and professionals.

When does a patient need palliative care?

Statistics show that about 3.5 lakh people die of cancer each year in India (Source: Kidwai Memorial Inst. Of Onclogy). Very few of these patients get the opportunity to receive palliative care, as most cases are diagnosed at an advanced stage.

Dr Divakaran says, “We offer palliative care from the day one of diagnosing a life limiting disease. Initially the palliative care component is very little. As the disease progresses, the curative prospect diminishes and the palliative care component proportionately increases.”

According to the experts we spoke to, ideally, palliative care should start from the time of diagnosis.

Why don’t we know more about Palliative Care in India?

In India, there’s a huge need to spread awareness about palliative care and remove the social stigma that some associate with it, likening it to a death sentence. A negative attitude towards oral morphine and misconception that it will lead to addiction also adds to the ignorance. In fact, according to experts, the World Health Organisation has a ‘three step ladder’ for the management of pain and oral morphine is one of the drugs used. Most professionals specializing in Palliative Care also mentioned that the concept and awareness of palliative care among the medical community itself is low.

Dr Simha points out the difficulty in procuring oral morphine in India and doctors who are not trained in pain management as one of the factors. Dr Abhijit Dam says it’s also because doctors do not often refer patients for palliative care. “There are varied reasons, some of which may border on self-interest on part of the doctors. Patients often see palliative care as a last option and are not comfortable with the option till late in the course of the disease, when they realize that they are dying,” he adds.

The situation is slowly changing. There is a M.D. (Palliative Medicine) course that is now offered at Tata Memorial Centre, Mumbai that is hopefully going to create better awareness about its holistic nature. The All India Institute of Medical Science is starting an MD in Palliative Care.

Is it provided free of cost?

In several cases, Palliative Care is provided free of cost. Karunashraya provides all its services completely free and in recent years, patients have come from all strata of society. Dr Dam mentions that their services are absolutely free as well. “In fact our team members pool in our personal resources to ensure delivery of services.”

The Pain and Palliative Care Society, Thrissur also provides free services. “Our service is open to all sections of the society,” says Dr Divakaran, adding that apart from patients from the poorer sections of society, they also have lots of patients from the urban educated classes. “The one factor which qualifies a patient for registering under our care is not class but suffering.”

The Ganga Prem Hospice team at Rishikesh has been running its Outpatient and Home Care service in Palliative Care since 2007. It is a free service.

How does the process work?

Palliative care is not just taking care of the symptoms. It also follows the total care concept, which includes counseling, psycho-social and spiritual needs. Several organizations offer Palliative Care services both at hospice and home. Karunashraya is the first hospice in India to offer terminally ill cancer patients the choice to alternate their stay at the hospice and home, depending on their state of health. Apart from their in-patient facility, they also have Home Care services, where a nurse goes to the homes of patients and attends to their dressings and counsel them apart from teaching the family how to give medications for pain management, when needed.

At Karunashraya, the patient’s smallest wishes are paid attention to as it may be their last. Special meals are procured if a patient wishes as it may be their last. There is a restful waterbody inside the facility to create a calm and serene atmosphere.

At Thrissur, a patient is first seen by a volunteer, who explores the psychosocial aspect of the patient’s illness experience and documents them in the case sheet. The patient is further seen by the palliative care physician. He explores the clinical aspects of the patient’s condition, documents it in the case sheet and prescribes appropriate medicines. The medicines are provided free of cost and home visits are planned according to the severity of the condition.

The Ganga Prem Hospice home care team includes nurses trained in palliative care, palliative care specialists and counselors. The team ensure that the terminally ill receive proper pain relief, check medications and dosage, dress tumour and bed sores and provide other services to make the patient comfortable.

At CanSupport, home care is provided to patients with advanced cancer and their families. Multi-disciplinary teams of qualified doctors, nurses and counselors routinely visit patients registered with them at their homes, offering information about the illness to facilitate informed choices and decisions about their care. Medications for pain and symptom management are also given along with comprehensive nursing care. The family is taught hands-on skills to take care of their dear one effectively at home. CanSupport also provides psychological, emotional and spiritual support and guidance to patients and families in bereavement care and counseling, says founder Harmala Gupta. CanSupport also runs a daily Pain & Palliative Care Outpatient Clinic in East Delhi, where they offer pain and symptom management, especially managing side effects of curative therapies and keeping the patient comfortable and motivated during the therapy as well as performing minor procedures.

Is it only for cancer patients?

Largely, most palliative care services are offered for cancer patients. But the definition is slowly expanding to include other ailments that would require pain management. It can apply to any disease that causes poor quality of life and needs long term care. As Dr Divakaran puts it, “any illness which takes a steady downhill course creating much suffering will be taken by our Society for care. Thus we take care of cancer patients, patients with end stage kidney disease, end stage cardio vascular disease, end stage respiratory disease, patients with incurable neurological problems like hemiplegia, paraplegia, motor neuron disease, parkinsonism and dementia.”

Dr Aditi Chaturvedi who is associated with Ganga Prem Hospice adds that Palliative care is now growing bigger and will soon encompass all branches of medicine.

What are the hurdles in its path?

One of the biggest hurdles has been the procurement of oral morphine. Dr Simha says that not even one per cent of those who need palliative care are attended to in India due to the bureaucratic red tape in the procurement of morphine. An archaic law earlier ruled that palliative care centres had to obtain several licenses from different government agencies to procure oral morphine. In February 2014, the Rajya Sabha approved amendments to the Narcotic Drugs and Psychotropic Substances Act. The amendment may now bring relief to thousands of patients in the country and make morphine more easily accessible.

“It is anticipated that with the passage of the amended NDPS Bill it will be easier for those delivering palliative care to have easier access to it as the multiple licensing procedure has been simplified greatly all over the country. We also hope that with easier access, more and more doctors will have an opportunity to use opioids like oral morphine and this will remove misconceptions regarding addiction, etc. The training of general practitioners in good pain control will hopefully follow and this will lead to the growth of palliative care services at all levels of the health system,” says Ms Gupta.

MR Rajagopal, chairman of Pallium India, adds that along with the amendment, awareness also needs to grow. “The NDPS amendment will make a difference only if concurrent education of professionals is in place. We worked with dept of Health of Govt of India and created a “National Program for Palliative Care” in 2012; but unfortunately they failed to make budget allocation for this. Pallium India is trying hard to raise resources for an educational initiative covering four states per year. There is hard work ahead. The NDPS amendment will have the short term benefit for many places where there are trained professionals struggling to access morphine.”

Institutes offering Palliative Care:

Sparsh Hospice

Hyderabad, Andhra Pradesh

Phone: +91-40-23384039

Mobile: +91-9490448222

www.sparshhospice.org

Karunashraya

Bangalore

Karnataka

Phone: (91) 80 42685666

Fax: (91) 80 28476201

www.karunashraya.org