August 2016 Newsletter
“In India, the poor die in agony in neglect, the middle-class die in agony in ignorance and the rich die in agony on a ventilator. No one gets a dignified and pain-free death”,
Dr Sankha Mitra is thus quoted in the article titled “Saying good-bye with dignity” published in The Hindu dated July 5, 2016.
The article describes the path of palliative care development in India, the involvement of the community and the role played by the central and state governments. Despite creation of a national program for palliative care, progress has been slow due to lack of budget allocation and professional education. Hospitals still do not stock and dispense morphine, and the basic principles of modern pain management are not being taught to medical and nursing students.
Read the complete article here: Saying good-bye with dignity
Death is the inevitable consequence of life. It will happen to you and to me – regardless of who we are, where we are and how we live.
This petition is applicable to each one of us. Act before it is too late.
Over 500 people have already signed this petition. If you haven’t done so already, please sign now!
This petition will be submitted to the Ministry of Health and Family Welfare, Government of India, to protect our end of life wishes.
Please read the petition and sign (by entering your name and email) to show your support. Pallium India will collect all the responses and forward it to the Ministry of Health and Family Welfare, Government of India.
“Despite its limitations, the 2015 Quality of Death index is an insightful and credible effort that laudably calls attention to the woefully inadequate care for some of the neediest and most vulnerable patients across the world, those nearing the end of life,” say Dr Eric Krakauer (Harvard Medical School) and Dr M R Rajagopal (Pallium India), evaluating the Economist Intelligence Unit’s 2015 report in the Lancet (Volume 388, 30 July 2016).
The report in the Lancet points out that though the top 27 overall scorers are high income countries, low middle income Mongolia (No.28) and low income Uganda (No. 35) are doing much better than the high income Russia (No.48) and Saudi Arabia (No.60). Much too often, lack of finances is pointed out as an excuse for not offering palliative care as in India (No. 67) and hence the authors have done well to point out the inequity.
The report points out the several limitations of the study. Yet that is the best index we have so far and as the authors exhort, “Public Health organizations, global health funders and political, economic and health care leaders should attend carefully to it.”
Read the article in the Lancet: End-of-life care across the world: a global moral failing
Please listen to what Dr Jochen Beker-Ebel has to say. In Germany, access to palliative care, a human right, has been assured by law as far back as twenty years ago. Let us remember his statement, “Implementation of a palliative care policy would reduce their desire for an early death.”
Read the news in the Times of India.
Ganga Prem Hospice, Rishikesh, Uttarakhand, invites applications from trained palliative care professionals to join its team as a full time Palliative Care Doctor.
Ganga Prem Hospice is a spiritually oriented, non-profit hospice for terminally ill cancer patients which currently offers home care to the districts of Rishikesh, Haridwar and Dehradun in Uttarakhand, North India.
The Hospice provides medical, social, emotional and spiritual support for individuals and their loved ones facing life threatening diseases.
A new inpatient unit at Ganga Prem Hospice is due to open by the end of 2016.
For more details on the hospice and the vacancy, please click here.
Contact: firstname.lastname@example.org / 91-9810931743
For more openings, visit our Careers page.
An opioid workshop was organised in Nagpur by NKPSIMS & RH & Lata Mangeshakar Hospital, Digdoh on 8th July 2016. It was attended by about 70 delegates including doctors, nurses administrators and medical social workers.
The purpose of the workshop was to highlight the vital role and safety of opioids – chiefly Injection and Tablets Morphine in managing pain and palliative care – as well as to make the delegates aware of the NDPS (Narcotic Drugs and Psychotropic Substances) Act of India and its recent Amendment.
The speakers included Dr Nandini Vallath, consultant of Pallium India, Dr Chandrashekhar Cham, well known senior anaesthesiologist and pain management consultant of Nagpur, Mr M. G. Kekatpure, the Joint commissioner of the department of FDA (Food and Drug Administration) Nagpur and Mr V.R. Ravi, drug inspector, FDA Nagpur. The event was also graced by the presence of Honourable Secretary VSPM Academy of Health and Education, Nagpur, Dr Amol Deshmukh, the Dean of NKPSIMS & LMH, Dr Kajal Mitra, Medical Superintendent, Dr Milind Bhrushundi and Professor and H.O.D. Forensic Medicine LMH, Dr Kanade, Professor and H.O.D. of Surgery, Dr Murtaza Akhtar, and many others.
The legal issues and commonly unknown facts concerning opioids, such as their cultivation, transport, formulations and the provisions and punishments mentioned in the NDPS act were discussed, as well as the NDPS amendment of 2014 which has made the process of procuring, storing and using the opioids, notably Morphine, simple and uniform for all states of India.
Read the complete report of the workshop, prepared by Dr Ravindra Kshirsagar, Lecturer in Medicine and palliative care physician of LMH.
“Law is codified common sense.” This is the sentence that remains uppermost in my mind when I think of the meeting on end of life care and law, held at the Taj Vivanta in Dwarka, Delhi, on the 10th of July 2016. The meeting was organised through the collaborative efforts of three professional bodies – Indian Association of Neurology, Indian Association of Palliative Care and the Indian Association of Critical Care Medicine.
In an event beautifully conducted by Dr Roop Gursahani, attendees including medical professionals, lawyers, media and the public discussed the draft law brought up by the government of India. The discussions were grouped under the following themes:
- Panel 1 – discussed ‘Patient perspectives’
Panelists: Harmala Gupta, Priya Jain, Nagesh Simha, Ajit Mansingh
The certainty of death and the importance of anticipating it were discussed by this panel. Several members of the audience shared personal stories that revealed the gaps and questioned the humane factor of care that is missing in the hospital culture.
- Panel 2 – The Doctor’s perspectives
Panelists: Raj Mani, Shivakumar Iyer, Sushma Bhatnagar, Sanjay Nagral
This panel discussed the relevance of the law within the current context of inappropriate and disproportionate interventions using biomedical technology. The alarming concerns on distressful, terrifying deaths were brought out and the audience contributed actively through sharing of personal experiences.
- Panel 3 – Importance of social mobilization
Nandini Vallath, Anita Anand, Apoorva Pauranik, Vinita Singh
The Kerala experience of community mobilization was shared along with lessons from the campaign on constitutional rights. The idea of organizing a public campaign for living will was discussed with strategies to develop awareness amongst the masses from all walks of life in India.
- Panel 3 – The related legal angles
Girish Gokhale, Vivek Diwan, Nausher Kohli
Eminent lawyers emphasized the relevance of the law as the right of every citizen of India for regulating her/his own treatment and choose to ensure a dignified exit from life. Legalities of traditional practices such as Sallekhana too, came up in the discussions.
“It is precisely because we are a poor country that we cannot afford not to do research,” said Jawaharlal Nehru. So meaningful. Do we really know what exactly are the issues adversely affecting the quality of life of the villager from U.P admitted to the Sufderjung hospital in Delhi with advanced cancer? And of his family? And do we really know what interventions are the best for them?
But in the context of medicine, research is a bad word in India now. Human beings were subjected to such unethical experimentation that the Supreme Court asked, “Are Indians all Guinea pigs?” There has been a backlash.
On 15 July 2015, ethicists and researchers got together with clinicians in Pallium India’s Trivandrum Institute of Palliative Sciences (TIPS) for a day of learning on ethics of research. We thank the faculty members, Dr Mala Ramanathan and Dr Anoop Kumar Thekkuveettil, and the Institutional ethics committee of TIPS led by its chairman Justice M. R. Hariharan Nair.
Pallium India’s half-way home for people with spinal cord injury helps in physical, social and psychological rehabilitation. One of our aims is to help them to be as independent as possible and to contribute to society.
Thanks to Institute of Hotel Management and Catering (IHMCT), Kovalam, they got a free catering course over several weeks. They have just graduated as chefs!
We shall come back to you with more news when they actually start working.
Best Wishes, Sameer, Shiju, Gopika and Priya!
NEW DELHI: Health may soon be declared a fundamental right of every individual, similar to education, if the draft National Health Policy proposed by the ministry goes through. Pending for nearly two years, the draft is expected to be sent to the Cabinet early next month, official sources said.
“We have already circulated a Cabinet note. It should be placed before the Cabinet in another week or 10 days,” a senior health ministry official told TOI. The ministry had held several rounds of discussions with stakeholders, including states and other government departments, and consensus had been built on its proposals, he added.
Among various proposals, the draft policy advocates a National Health Rights Act, which will make “denial of health” an offence.
Bengaluru: While the nation debates the right to passive euthanasia, Karnataka is all set to get its first palliative care policy in about two weeks. The policy will ensure terminally ill patients in the state mandatorily get all-round care. Teams of dedicated doctors and volunteers will ensure such patients have access to complete care — physical, psychological, social and spiritual — in the last days of their lives.
Karnataka will be the third state in the country, after Maharashtra and Kerala, to get a palliative care policy of its own. Experts say this is a better alternative to euthanasia, whether passive or active.
Bengaluru: Karnataka is all set to get its first MD course in palliative care from the next academic year following the introduction of the state’s palliative care policy in a few days. The three-year course at the Rajiv Gandhi University of Health Sciences (RGUHS) will run at the Kidwai Memorial Institute of Oncology here.
After Tata Memorial Centre, Mumbai and All-India Institute of Medical Sciences, Delhi, Kidwai hospital will be the third institution to offer MD in palliative medicine.
One of my favourite aunts passed away very recently. She had lived a long and gratifying life. In her early eighties, she was diagnosed with dementia. Fortunately, her children, grandchildren and long-term maid took loving care of her in her last decade. By the time she passed away in her home, she could recognise only the few people who were closest to her. The last years of her life were not only filled with attention and love but also with the deep and frustrating challenges of not being able to care for herself.
My aunt was lucky. Most people in their twilight years would consider themselves blessed to not have to worry about the financial costs of end-of-life care, to have a family that could access health information on the Internet or from medical journals to manage their condition, and access to treatment by the best doctors. They would be fortunate to not be on expensive medical equipment and drugs that lower their quality of life, and to die without significant pain.
Palliative care: do we need more specialist clinicians, or more generalist staff better trained in it? My answer is both.
About 500 000 people die each year in England and Wales. Yet the United Kingdom has only an estimated 519 specialist palliative medicine consultants and fewer than 5000 crucial specialist palliative care nurses. A national audit of end of life care in hospital by the Royal College of Physicians found a median of one palliative medicine consultant and five nurse specialists for every 1000 adult hospital beds.
Some of us will die suddenly. Others may have only weeks to prepare after an unexpected terminal diagnosis, but most will die with or from long term conditions. Multiple contacts with health and care practitioners give us many opportunities to discuss and plan for our deaths.
When pharmacologist Ravindra Ghooi learned in 1996 that his mother had terminal breast cancer, he began to investigate whether he could obtain morphine, in case she needed pain relief at the end of her life. But a morphine prescription in India at that time, even for the dying, was a rare thing: most states required four or five different licences to buy painkillers such as morphine, and there were harsh penalties for minor administrative errors. Few pharmacies stocked opioids and it was a rare doctor who held the necessary paperwork to prescribe them. Ghooi, who is now a consultant at Cipla Palliative Care and Training Centre in Pune, used his connections to ask government and industry officials if there was a straightforward way of obtaining morphine for his mother. “Everybody agreed to give me morphine,” he recalls, “but they said they’d give it to me illegally.”
Jim Cleary, an oncologist and palliative-care specialist at the University of Wisconsin–Madison, has heard similar stories. “Patients with pain have been unwitting victims of the war on drugs,” he says. Opioids have been a hot potato since the 1961 United Nations Single Convention on Narcotic Drugs. The US-led war on drugs that followed resulted in widespread reluctance to prescribe and supply opioids for fear that patients would become addicted or overdose, or that drug cartels would divert opioids to the black market. Cleary says that countries such as the United States have an “unbalanced” opioid situation, and that abuse in these countries has distorted policies elsewhere, restricting legitimate access.
Heather Meyerend is a hospice nurse who works in several neighborhoods in South Brooklyn—Sheepshead Bay, Mill Basin, Marine Park, Bensonhurst, Bay Ridge. She usually has between sixteen and twenty patients, and visits each at home once a week, sometimes more. Some patients die within days of her meeting them, but others she gets to know well, over many months. She sees her work as preparing a patient for the voyage he is about to take, and accompanying him partway down the road. She, like most hospice workers, feels that it is a privilege to spend time with the dying, to be allowed into a person’s life and a family’s life when they are at their rawest and most vulnerable, and when they most need help. Some hospice workers believe that working with the dying is the closest you can get on earth to the presence of God.
Heather is not brisk or efficient, as nurses in hospitals are. She is purposely inefficient, in fact. Most of the time when she visits patients, she doesn’t have much to do: she takes vital signs, she checks that there are enough supplies and medications in the house, she asks if old symptoms have gone away or new ones developed. If she were rushing, she could do all that in about five minutes, but her visits usually last an hour or more. Sometimes there is a complicated medical situation to take care of. Sometimes she does something non-medical that needs to be done, which is the hospice way—she might sweep a floor, she might heat up dinner.
The woman came into the office with her husband, looking totally out of place amid the frail geriatric patients at my palliative care clinic. Elegant, slender, with a gorgeous head of curly blond hair, she was nothing like what I expected when she had called a couple of weeks earlier, asking for a consultation.
Her cancer story, too, was atypical.
The woman, a 50-something practicing clinical psychologist, had been diagnosed with stage 4 non-small-cell lung cancer six years earlier, after experiencing a persistent cough. By the time her tumor was removed surgically, the disease had already spread outside the lung, so the patient received chemotherapy and radiation treatments. With each recurrence or progression of disease, the patient’s oncologist thought of a new approach, and each one worked. The patient was able to maintain her busy practice and travel. She hoped she might turn this cancer into a chronic disease instead of a death sentence.
Given how well she appeared to be doing, I wondered why she was in my office. We typically see patients with pain, fatigue or shortness of breath. The woman had none of these symptoms.
We welcome international visitors at Pallium India and appreciate the support from our colleagues around the world. We request that you contact us at least 2 weeks prior to your visit so that we can make the necessary arrangements. Sorry; we would discourage “drop-ins” for fear of the impact on patient care.
Contact Pallium India’s Information Centre (9 am to 12 noon) for information related to palliative care and about establishments where such facilities are available in India.
Telephone: +91-9746745497 or E-mail: email@example.com
Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum
For more details, please visit: http://palliumindia.org/info-centre/
“You don’t need a law to provide palliative care”, says Lawyer Girish Gokhale.
Hey, medical system, sit up and listen.
Mr Gokhale, your question shames us. We are prepared to discuss endlessly about artificial ventilation of dying people. We have been discussing that for 20-odd years of course; but that does not deter us; we go on and on.
But we are reluctant to make palliative care part of health care delivery. Maybe it is too inexpensive to be attractive to us!
Read the report in Times of India dated 11 July, 2016: Doctor group seeks law to spare patients needless med spend
posted by palliumindia in Newsletter