January 2012 Newsletter
Is There a Caste System Among Diseases?
Power groups achieve a lot by advocacy and by collective bargaining. There are any number of organizations fighting for people with cancer or with HIV. Government programs in many countries support their treatment.
But if you have the bad luck to have an uncommon disease? Like Rahmath with systemic sclerosis, whom we blogged about a while back, no one wants you!
The USA’s National Institutes of Health (NIH) lists more than 6000 such uncommon diseases, and there are millions of people with such diseases.
At least that used to be the case… We are very very happy indeed to hear about the National Organization for Rare Diseases (NORD) in USA. Pallium India’s friend Dianne Gray, who lost her son to such a disease, is involved with this organization. A report from thesurvivorsclub.org, below.
May NORD lead to global action!
Dianne Gray’ son Austin was 4 years old when he lost his vision and started falling. He was subsequently diagnosed with neurodegenerative brain iron accumulation, a rare disease which eventually killed him at the age of 14. However, the family’s often frustrating struggle to provide him with comfort and relief has spurred Gray to help other families dealing with un-researched conditions, according to ABC News.
Recalling the obstacles she and Austin faced in order to obtain the right diagnosis, treatment and support, Gray told the news provider about the helplessness she felt when doctors were not able to treat her son, or even alleviate his pain.
That is what inspired her to become involved with the National Organization for Rare Diseases (NORD), which sponsored the second annual National Rare Disease Day last Sunday.
NORD serves as a liaison for researchers and families coping with rare diseases, offering patient assistance programs and networking opportunities. It also collects donations as funding is among the most important obstacles to fighting these types of disorders.
According to the National Institutes of Health, there are more than 6,000 rare diseases affecting approximately 25 million Americans.
How many million stories of suffering would that work out to?
It is sad to see that there is often discrimination in the name of a diagnosis even in palliative care!
The clinical services of Trivandrum Institute of Palliative Sciences (TIPS), the outpatient and inpatient clinics and headquarters of the home visit program, have just moved from S.U.T. Specialty Hospital (Pattom) to:
Phone: +91 9387296889
The move was unavoidable. Any inconvenience caused to our patients, families and visitors is sincerely regretted.
Our office and training center continue to be in the old location namely, S-10, Vrindavan Gardens, Pattom, Trivandrum 695004.
We are glad to report that a volunteer-trustee of Pallium India, V Jayaprakasan has taken over as the Chief Executive Officer of Pallium India.
Dr V Jayaprakasan (right) is a retired Professor and Dean of Veterinary Sciences of the Kerala Agricultural University.
He came across palliative care when his dear wife Sushama got cancer of the pancreas. She is no more now, and his work in Palliative Care is the Taj Mahal that Jayaprakasan (JP as he is fondly called by the team) has built for the departed Sushama.
Welcome, JP, and thank you for all that you are doing for people in pain and suffering.
We bring you good news!
Palliative care reaches yet another virgin state in India.
It is one of the eight palliative care centers that Pallium India has had the privilege of catalyzing in the last few years in eight different North and North-East Indian states.
A doctor-nurse team, Ms Rita Saha (nurse) and Dr Batan Janapathy underwent Six Weeks’ Certificate Course at TIPS, Trivandrum. Within one month of finishing the training program, they have already started home visits!
Congratulations, Dr Majumdar, Dr Janapthy and Ms Saha.
In these days of discussion about improving access to pain relief and palliative care in India, and in all developing countries, it is important to understand the background reality that most health care costs need to be out-of-pocket (OOP): there is no social security system or insurance system paying for health care.
In a Times of India Special Report, On Life Support, Subodh Varma brings up some important facts about out of pocket (OOP) expenses:
Economic theory would dictate that people would not buy goods or services that are too costly for them.
This may apply to chocolates and deodorants but healthcare cannot be dealt with in this way.
When somebody falls sick, the family will be forced to seek medical attention even if it means destroying their meagre budget.
along with some jaw-dropping statistics. In India:
- personal expenditure on health care is 75%, vs. 12-13% in UK & USA.
- public expenditure on health care stagnated at around 1% of GDP.
- catastrophic OOP spending pushed 39–million people into poverty.
- 20% of sicknesses go untreated due to lack of money to see a doctor.
- there are 5,583 persons per rural hospital bed (Ministry of Health’s Central Bureau of Health Intelligence (CBHI))
What the article does not say is how inappropriately much of the money is spent, and how palliative care could ensure that the meagre resources are spent appropriately and that suffering is mitigated at low cost!
Read the full article: On Life Support
An article in the Los Angeles Times, “Having to think about the unthinkable“, discussing advance healthcare directives assumes greater significance since we recently blogged about “inappropriate care“.
An advance healthcare directive allows someone to: “authorise a loved one or someone else to have power of attorney — or serve as your agent — to make healthcare decisions for you if you’re unable.”
The article begins with a quote from Dr. Neil S. Wenger, Director of UCLA’s Health System Ethics Center:
“I could show you case after case, I could bet you million-to-1 odds these patients would not want to be in this situation.”
He was talking about patients in critical condition who are “attached to machines, being kept alive” in hospitals, many of them suffering.
The answer, the author goes on to say, lies in people leaving advance directives.
It is not too soon for us to start doing it in India!
Thanks to Ms Sunshine Mugrabi for bringing this to our attention.
LA Times columnist, Steve Lopez, has many more interesting columns in his “Matters of life & death” series.
What a divine way to celebrate Christmas!
The Senior Citizens Association of Thiruvananthapuram celebrated Christmas by giving – to “Buds“, a school at Venganoor for mentally challenged children, to a home for destitute women and so on.
They gave their annual PMCMM Award to Pallium India – a Certificate of Honour and a cash award.
Senior Citizens Association, all of us at Pallium India are immensely grateful to you for this recognition and encouragement.
Thank you very much, and a very Happy New Year to all of you!
Dr Supten Sarbadhikari invites your attention to a study conducted in Tamil Nadu and Kerala about the problems of the elderly. Reported in The Hindu, New Delhi edition:
AARTI DHAR – THE HINDU – NEW DELHI, December 29, 2011
The commonest self-reported morbidity among the elderly in Tamil Nadu is chronic joint pain, while in neighbouring Kerala hypertension is highly prevalent, according to a new study conducted in the two States.
Over 57 per cent of senior citizens in Kerala suffer from hypertension and 32 from diabetes. The figures for Tamil Nadu are 20 and 14 per cent.
“The elderly are an important segment of our population. They have played a key role in shaping the future of the young India. Their share is expected to be at 12.4 per cent by 2026 [as per the Central Statistical Organisation’s Situation analysis of the Elderly in India, 2011].” Therefore, it is essential “to make special provisions for the health care of the elderly and, in particular, offer treatment and diagnostic services for the management of non-communicable diseases. Also, it is essential to immediately initiate screening of people over 50 for key non-communicable diseases and simultaneously start health education for the ageing population,” says K. P. Rajendran, team leader of the research study.
The study was undertaken to validate the improvement brought about by projects run by HelpAge India and Cordaid (Catholic Organisation for Relief and Development Aid). It was done by the capacity-building organisation Four X 4 Consulting with support from the Institute of Palliative Medicine, Kozhikode, Kerala, and the Manakula Vinayagar Medical College and Hospital, Puducherry, covering 1,800 families in Tamil Nadu and 450 families in Kerala by random sampling.
In Tamil Nadu, the commonest self-reported chronic morbidities among the elderly were joint pain (61.3 per cent), eye and ear problems (38.4 per cent), hypertension (20.7 per cent), diabetes (13.9 per cent), heart diseases (4.4 per cent), respiratory illness (2.9 per cent), stroke (1.2 per cent) and mental illness (0.6 per cent).
In Kerala, 71.6 per cent of the elderly had at least one of the chronic morbidities at the time of survey with hypertension topping the list (57.3 per cent), followed by joint pain ( 37.5 per cent), diabetes and ear/eye problems (32 per cent each), heart disease (17.1 per cent) and asthma (11.4 per cent).
In Tamil Nadu, most of the chronically-ill elderly people (46.5 per cent) accessed government health care services and 31.4 per cent went to private hospitals. Five per cent accessed health care offered by village-based clinics of the HelpAge programme, while 15.2 per cent took no treatment. Utilisation of the Indian systems of medicine was less than 1.5 per cent on average.
In Kerala surprisingly most of the elderly received treatment from private hospitals (55.8 per cent) and 34.6 per cent from government hospitals. Five per cent adopted the Indian systems and 2.4 per cent did not take any treatment.
The study covered four domains of quality of life — physical health, psychological health, social relationships and environment.
Interesting that in Tamil Nadu, the majority of the elderly sought help from the Government agencies while Keralites seemed to seek private hospitals?
Why? Do Keralites have more money? Or is the Government’s health system better in Tamil Nadu than in Kerala?
From the Hyderabad, Andhra Pradesh edition of The Hindu, 6 January 2012:
Roughly, there are two lakh cancer patients needing palliative care in State
There are countless number of patients, suffering from incurable ailments, in the capital and elsewhere who endure pain in silence. Such patients and their families are not aware of the applications of palliative care in controlling the pain and in the process lead a quality life, until it lasts.
Families also struggle to accept the fact that the terminally ill patients do not need a ‘cure’ but instead need palliative care to heal the pain. “There is a need for specialised palliative care departments in hospitals. It is not just cancer, patients due to other ailments like HIV, muscular dystrophy, dementia, end-stage and heart problems need pain relief. We are unnecessarily allowing them to endure pain in silence,” says executive member, Pain Relief and Palliative Care Society (PRPCS), Dr. Rohina R. Gupta.To drive home the virtues of palliative care and also to highlight the plight of terminally ill patients, the society is screening a documentary ‘Life Before Death’. The screening of the documentary will coincide with World Cancer Day, which is in the first week of February.
Palliative care is aimed at providing the patients with pain and symptom relief, spiritual and social support till the end of life. “Roughly, there are two lakh cancer patients needing palliative care in the State. This is in addition to patients suffering from other incurable diseases. Of them, only one per cent have access to morphine, which is a pain reliever and the rest just suffer in silence,” Dr. Rohina said.
Like many cancer hospitals, community cancer centres for HIV positive persons, secondary and primary health centres do not have palliative care departments. Such facilities do not have the necessary medications, including morphine, or trained health care workers.
“There is a need for develop State and national-level palliative care policies and strategies. Community-based and institution-based palliative cure is the need of the hour,” Dr. Rohina pointed out.The movie ‘Life Before Death’ is a multi-award winning documentary series that showcases the journey of health care professionals in 11 countries and their attempts to help terminal patients who desperately need palliative care. The documentary ‘Life Before Death’ comprises a feature film, 50 short films and a television documentary.Persons interested in contributing to palliative care can contact: 94916-66688
“Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop”
Says Atul Gawande in the New Yorker of August 2, 2010.
But do not think that this is one of those articles that blindly advises against aggressive curative treatment. It is not.
Atul Gawande argues forcibly for a balance. And for the evidence in favor of combining life-prolonging treatment with palliative care.
“A two-year study of this “concurrent care” program found that enrolled patients were much more likely to use hospice: the figure leaped from twenty-six per cent to seventy per cent.
That was no surprise, since they weren’t forced to give up anything.
The surprising result was that they did give up things. They visited the emergency room almost half as often as the control patients did. Their use of hospitals and I.C.U.s dropped by more than two-thirds. Over-all costs fell by almost a quarter.”
“For many years I worked in palliative care. My patients were those who had gone home to die.
Some incredibly special times were shared. I was with them for the last three to twelve weeks of their lives. People grow a lot when they are faced with their own mortality.
I learnt never to underestimate someone’s capacity for growth. Some changes were phenomenal. Each experienced a variety of emotions, as expected, denial, fear, anger, remorse, more denial and eventually acceptance.
Every single patient found their peace before they departed though, every one of them.
When questioned about any regrets they had or anything they would do differently, common themes surfaced again and again.
Here are the most common five:
- I wish I’d had the courage to live a life true to myself, not the life others expected of me.
This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.It is very important to try and honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.
- I wish I didn’t work so hard.
This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.
- I wish I’d had the courage to express my feelings.
Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.
- I wish I had stayed in touch with my friends.
Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.
- I wish that I had let myself be happier.
This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.
When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying”.
Dr Eva Duarte MD, Chief of Palliative Medicine and Symptom Control Department at National Cancer Institute of Guatemala, writes to share a piece of good news for all those interested in palliative care in developing countries:
The Guatemalan Government published yesterday in the official newspaper Diario de Centroamerica the Agreement of Constitution of the National Commission of Palliative Care of Guatemala, with a wide representative body of institutions.
For us, it is definitely the best gift to start the year!
Our Government will change on January 14th, and we are so glad that they decided establish this Ministry Agreement so we can continue to work with the new team.
Have you missed normal weekly short films from the “LIFE Before Death” series over Christmas and New Year?
Don’t worry, you haven’t missed a thing!
The team behind the series have paused the release schedule to focus on the upcoming premiere of the “LIFE Before Death” feature film’s official release on 01 February 2012.
Pallium India hears excellent reports about it from those who saw a preview at the Leadership Development Initiative at San Diego.
The man behind this advocacy initiative, Mike HIll, requests you to consider
- Hosting a Screening – over 100 screenings in over 30 countries have now been confirmed. Pallium India will be screening the film on Feb 3 in Trivandrum.
- Issuing a Press Release linking your activities with the release of the film (templates available)
- Encouraging others to host or attend a screening
- Providing him with Calls-To-Action that can be included on the project website that allow individuals to Do Something about the issue (ie Donate, Volunteer, Advocate etc)
- Posting the Trailer to your website or Facebook page with an announcement about the upcoming release
As a pointer, please see the report in The Hindu: Need for palliative care stressed
The word “palliative” seems to be taboo all over the world! For a long time, no one knew what the word “palliative” meant. When finally people start hearing about it, yet it is so misunderstood.
Read the following by Dr Kohar Jones… The man was a fighter, but that does not mean that he needed to be persuaded to fight against a windmill! His doctor realises with some regret that he should have encouraged the patient to take on a worthwhile fight:
The positive effects of palliative care on quality of life
“I’ve been a fighter all my life,” said my new patient, a middle aged man with thinning hair, a worried wife, and a dismal prognosis. He had worked all his life as a plumber with no health insurance. When he was healthy, it was okay. But now he was sick.
I was meeting him for the first time in the community health center where I work as a family physician, tending to all the health needs of a community, from birth to grave. One week earlier, he had gone to the local community hospital when he could no longer swallow. The emergency room doctors admitted him for a complete workup. Inside the hospital they found a tumor in his esophagus, and two in his lungs, one in each lobe of his liver, as well as in his adrenal glands.
Metastatic cancer, spread throughout his body.
The private oncologist who covered the for-profit community hospital where he had received his diagnosis would not see a man in his office who had no insurance. The oncologist directed the patient to me, expecting me to make urgent appointments with the oncologists at Cook County Hospital, Chicago’s county-financed public safety net system for the uninsured. They would provide top quality care, but it takes months for appointments to make it through the referral system, even when they are marked urgent.
“The oncologist told me you would help me,” he said.
An article in “Mid-Day” highlights the need for improved palliative care facilities in the state of Maharashtra and brings to attention the contrast between Kerala which has more than 170 palliative centers and Maharashtra which has only three!
The article, “Till the end…”, describes the efforts that the palliative care leaders, Dr M.A Muckaden, Dr Manjhiri Dighe and others are making to bring in a palliative care policy in the state and also to improve palliative care education to professionals.
The Maharashtra Health Minister, Suresh Shetty, responds:
As far as making palliative care a compulsory part of the medical curriculum is concerned, we have forwarded it to the Directorate of Medical Education in Nashik.
The decision has to come from there.
A lot more advocacy is needed, obviously!
The Union Cabinet on Thursday approved the National Policy on Narcotic Drugs and Psychotropic Substances (NDPS) drafted by the Ministry of Finance, Department of Revenue.
We are glad to note that the policy specifically mentions the need for making opioids available for palliative care.
It is also learnt that the cabinet has also decided to go ahead with privatization of manufacture of poppy concentrate from poppy straw. This has so far been the monopoly of the Government.
New Delhi, Jan 12 (ANI): The Union Cabinet on Thursday approved the National Policy on Narcotic Drugs and Psychotropic Substances (NDPS) drafted by the Ministry of Finance, Department of Revenue, in consultation with the concerned Ministries and Agencies of Government of India and the State Governments.
The salient features of the policy are as follows:
- The policy recommends production of Concentrate of Poppy Straw (CPS) in India by a company or body corporate. This would enable India to retain its status of a traditional supplier of Opiate Raw Material (ORM) to the rest of world, while remaining competitive.
- The consumption of poppy straw by addicts will be gradually reduced and finally stopped in a time frame decided by the States.
- On the illicit cultivation of poppy and cannabis, the policy emphasizes use of satellite imageries for detection of illicit crop and its subsequent eradication and development of alternate means of livelihood in respect of cultivators in pockets of traditional illicit cultivation.
- The private sector may be allowed production of alkaloids from opium. At present alkaloids from opium are produced only in Government Opium and Alkaloid Factories (GOAFs).
- Non-intrusive methods of regulating the manufacture, trade and use of such psychotropic substances will be introduced,
- Emphasis will be laid on adequate access to morphine and other opioids necessary for palliative care, a strategy to address street peddlers of drugs, periodic surveys of drug abuse to gauge the extent, pattern and nature of drug abuse in the country, recognition of de-addiction centers.
- There will be a time bound plan of action, detailing the steps to be taken by different Ministries/ Departments/ agencies, in response to the recommendations of the International Narcotics Control Board.
The policy attempts to curb the menace of drug abuse and contains provisions for treatment, rehabilitation and social re-integration of victims of drug abuse. Implementation of the provisions of the policy will lead to reduction of crime, improvement in public health and uplifting of the social milieu.
The NDPS Policy will serve as a guide to various Ministries and organizations and re-assert India’s commitment to combat the drug menace in a holistic manner.
There are four broad aspects of narcotic drugs and psychotropic substances:
- administration of the NDPS Act and Rules framed there under
- legal production, manufacturing, trade and use of narcotic drugs and psychotropic substances for medical and scientific uses
- drug (Illicit) supply reduction
- drug (Illicit) demand reduction
Previous winners of the award include,
- Mr. S.R. Rao, former Commissioner of Surat
for his contribution to the cleaning of the town in the aftermath of plague in 1990s and for setting up systems which will keep the town clean.
- Justice K. Narayana Kurup, Former Acting Chief Justice and Judge, High Court of Madras
in recognition of his outstanding contributions on wide ranging issues of societal concern and especially his relentless crusade against tobacco.
- Prof. K. Srinath Reddy, President, Public Health Foundation of India
in recognition of his contribution towards promotion of health, prevention of cardiovascular and other chronic diseases and for his role in championing tobacco control.
The Award Presentation Ceremony will be on February 27, 2012 at the Jawaharlal Auditorium, All India Institute of Medical Sciences, New Delhi.
The MBBS will be replaced by a 3-1/2 year course leading to a BSc in Community Health Care.
The graduates are expected to serve at the sub-centres as a link between the nursing auxiliaries/public health nurses and the doctor at the Primary Health Center.
On the 13th of January 2012, India completes one year without a single report of wild poliomyelitis!
Tremendous achievement indeed!
Apologies for bringing in unpleasant thoughts to celebration time. But do let us spend a moment to think how India will treat the survivors from previous years!
Dr. Sanghamitra Bora from Cancer Centre Welfare Home & Research Institute, Kolkata has sent us a detailed programme for the Preconference CME to be held at IAPCON 2012.
Alpha Pain Clinic, founded by Mr K.M. Noordeen, is to be this year’s recipient of the “Chirayinkeezh Ansar Memorial Award“.
Chosen by Abu Dhabi Malayali Samajam, the award is in recognition of Alpha Pain Clinic’s social work among people in pain and suffering.
The award scroll and the purse of Rs. 100,000 will be received by Mr Noordeen in Abu Dhabi.
Dr. Sanghamitra Bora from Thakurpukur Cancer Center and Research Institute, Kolkata, writes to say,
I was one of the panelists in “Meet the Scientist” program in Eastern India Science Fair at Kolkata.
It was good to be with young students of 4th to 12th. There were about 250 young children and you won’t believe, they came up with such beautiful questions.
One sixth standard student asked me: “Is there a relation between science and religion? And what is it?”.
Another question was: “Do you mean to say that you have been defeated by cancer once it has been declared incurable?”
Many of them took my number and shared their experiences while dealing with cancer patients who were their relatives.
Congratulations, Dr Sanghamitra.
No doubt, advocacy would be most worthwhile when we work with young minds.
Sometimes even to become part of the problem.
Intensive care in the context of incurable diseases is a case in point.
What is the purpose of intensive care?
It is aimed at Intensive monitoring and Intensive therapy so that individual organ dysfunctions are identified early and corrected and lives are saved. Which is a great thing to achieve when the life is indeed salvageable and when the salvaged life is of reasonable quality.
Unfortunately, medical science, by and large, seems to have failed to restrain this facility with the result that even people who are obviously dying of incurable diseases are subjected to isolation in intensive care units where there is no difference between day and night, where they are imprisoned by monitors and devices with a tube in every orifice, where they die after prolonged suffering, devoid of human contact.
A study published by Ruth D Piers and colleagues in the Journal of American Medical Association (JAMA. 2011;306:2694-2703, 2725-2726) found that 27% of respondents (doctors and nurses working in intensive care units) perceived inappropriate care happening in at least one patient under their care on a particular day.
And in 89% of such cases, patients received inappropriately “too much” care.
But the system goes on, regardless.
Better protect yourself with “advanced care directives”!
posted by palliumindia in Newsletter