In a few years, those aged above 65 years would soon outnumber children under the age of 5; by 2030, their population would touch a billion… a burgeoning section of society whose demands on health care, and specially palliative care, threaten to topple the existing frail systems.

Is it a surprise that in a nation where three-fourths of the population survive a daily existence, unaware how to “live” a life, there isn’t much thought given to how we die? [..] dignity in death is a pipe dream for those who have to fight for dignity in life…

So writes Ameet Bhuvan from Bhubaneswar, India, in response to a Healthcare Report “How We Are Dying?”, featured in the Outlook magazine, which has picked up on the report from the Economist’s Report and Index on Quality of Death and Dying.

But, Kerala stands as a “beacon of hope”. With only 3% of the country’s population, Kerala is not only the lone state to have a formal palliative care policy in place; it also provides 2/3 of the care services available in India, with the government providing funding for community based care programmes.

It is also one of the first of Indian states to relax narcotics regulation to permit use of morphine by palliative care providers.

More interesting insights into this issue are available at Outlook Magazine: How We Are Dying?.

She investigates how this has come about, and what steps are being taken to stop patients living and dying in extreme pain.

Here is part of what she says about India in the article:

India may be one of the world’s largest legitimate opium growers, but only about 0.4% of the population in need of opioids for pain relief get them, according to figures from 2007.

Restrictions result from an attempt to tackle the growing drugs trade. In 1985 the government passed a law that required pharmacies to have multiple licences from different agencies before they could stock and dispense morphine. The drug then disappeared from the shelves and doctors stopped prescribing it.

Realising the inadvertent consequences of its law, the government then allowed India’s states to amend rules to allow hospices to stock and dispense morphine without complex licensing. The problem is, only a few states have chosen to do so. And the new rules do not affect the onerous pharmacy licensing system, which still applies.

Full text is available if you have access to BMJ here…

EIU/Lien White Paper

The Economist Intelligence Unit of the Economist and Lien Foundation in Singapore joined hands to produce a white paper on Quality of Death (pdf) that was published on 14 July 2010.

A poor quality of death means intense suffering for the dying person and his family and the situation can improve only with improved access to palliative care services.

The white paper lists 40 countries and ranks them according to Quality of Death. UK ranks first, and sadly, India comes at the very bottom as the 40th, next to Uganda. As a redeeming feature, the exceptional performance of Kerala in this field is highlighted in the paper.

Grim reapings: An attempt to rank end-of-life care in different countries

Quality of Death Ranking

CUSTOMER-SATISFACTION surveys are commonly used to improve the service in hotels and shops. Alas, they are unsuitable for rating the quality of death. So the Lien Foundation, a charity, commissioned the Economist Intelligence Unit, our sister company, to devise a ranking of end-of-life care. The report, published on July 14th, rates 40 mostly rich countries by how well they care for the dying.

Britain tops the table. For all the health-care system’s faults, British doctors tend to be honest about prognoses. The mortally ill get plentiful pain killers. A well-established hospice movement cares for people near death, although only 4% of deaths occur in them. For similar reasons, Australia and New Zealand rank highly too.

Some countries, such as Denmark and Finland, that normally score higher than Britain on human-development indices rank lower on the quality-of-death index. They concentrate more on preventing death (which they see as a medical failure) rather than on helping people die without suffering pain, discomfort and distress. America scores poorly because of the health insurers’ rule that they pay for palliative care only if a patient relinquishes curative treatments.

The report combines hard statistics such as life expectancy and health-care spending as a share of GDP with weighted assessments of other indicators. One is the public awareness of the availability of hospices. Another is whether a country has a formal policy or legislation on treating the terminally ill (only seven of the 40 do).

Brazil, China, India and Russia, the four largest emerging economies, cluster at the bottom of the table. Their health-care systems still take little account of dignity in death (a sprinkling of hospices in places such as St Petersburg in Russia, or Kerala in India, are honourable exceptions). The report’s authors blame cultural factors as well as bureaucratic resistance. In China, for example, a strong taboo hangs over discussing death. The ranking may spur improvement. But for those who mind most, complaining about poor deathbed treatment is unusually difficult.

Index Methodology

The Index scores 40 countries (30 OECD nations and 10 select others) using data and interviews with a variety of doctors, specialists and other experts across four categories: Basic End-of-Life Healthcare Environment; Availability of End-of-Life Care; Cost of End-of-Life Care; and Quality of End-of-Life Care. 27 main indicators fall into three broad categories:

• Quantitative indicators: Eleven of the Index’s 27 indicators are based on quantitative data, such as life expectancy and healthcare spending as a percentage of GDP.
• Qualitative indicators: Ten of the indicators are qualitative assessments of end-of-life care in individual countries, for example “Public awareness of end-of-life care”, which is assessed on a scale of 1-5 where 1=little or no awareness and 5=high awareness.
• Status indicators: Three of the indicators describe whether something is or is not the case, for example, “Existence of a government-led national palliative care strategy or agenda”, for which the available answers are Yes, No or In Progress.

Palliative care features strongly in the key findings:

The full report can be downloaded here in PDF format…

& visit the Lien Foundation’s interactive website: Life Before Death

Dr Leng shares her new and exciting experiences in Mizoram:

Dr Mhoira Leng (r)

This was my third visit to Mizoram building on the project supported by Pallium India that led to the first Palliative Care Service in the state in Government Civil Hospital in the capital Aizawl. I was joined by Dr Grahame and Cheryl Tosh from the UK and the Rev Hamilton who was until recently, Chaplain and Education Officer at CMC Vellore Palliative Care Department.

As ever, this remote part of India presents many travel and communication challenges. Monsoon is not the easiest time to visit, with grounded flights in one of India’s smallest state capital airports, which nestles in the midst of jungle-covered mountains and then the landslides and mud baths on the roads.

Palliative Care Toolkit Training

Last year’s visit focused around the Civil Hospital and the delivery of a 5 day training, using the Palliative Care Toolkit. We also spent a week meeting and making contacts in government, other hospitals, community leaders, the Regional Theological College, and those involved in health and social care training. Following on from these contacts, there were 2 hospitals that seemed to have a real vision for palliative care developments and asked that any future visits include them.

So we arrived for a short 1 week visit with the aim of offering mentorship and support to Durtlang and Serkawn Hospitals. Durtlang Presbyterian Hospital is a 300 bed general hospital in Aizawl that has extensive community outreach and also a ward for those affected by substance misuse and HIV/AIDS. The Medical Director, Dr Lalremthanga was very welcoming, arranging for us to address a group of his staff and spend time with Dr Sanga who leads the 2 mentioned services.

Dr Sanga

Grace Home is about to be rebuilt and provides treatment support for patients with HIV/AIDS and also palliative care, especially for those destitute or without community support. The new unit will be ready next year and has room for running education programmes. They are keen to explore how to fully integrate palliative care into their programmes and Dr Sanga hopes to undertake further training, to be able to give leadership.

There are also 3 nurses who completed the Toolkit course last year. We also followed up a lecture given at the Regional Theological College with a seminar led by Rev Hamilton on pastoral care at the end of life. Given the prominent role church leaders have in all aspects of community life, this was a significant development.

Dr Leng, Dr Sanga, Dr Grahame Cheryl Tosh & the Team

5 to 7 hours away, by a winding mountainous road, in the south of the state, is the second city of Lunglei. It is here that Serkawn Baptist Hospital runs its inpatient service (100 beds) and also an extensive community outreach and second clinical base in Lawngtlai. An impressive and gentle leader, Dr Lalramzauva, completed the Toolkit training last year along with the senior nurse tutor from the nursing college. He committed at that time to integrating palliative care in Serkawn and we wanted to visit to offer support and explore how they were progressing. The palliative care team consists of 2 nurses, a social worker and medical leadership and is beginning by offering sensitisation and clinical review in the hospital itself.

We discussed 2 recent challenging cases and met both patients and their families. They have registered to obtain oral morphine tablets and are optimistic about this being successful.

We also discussed integrating palliative care into their community health training programmes. It is early days for this service and they will need to have some of the clinical staff access some hands-on training and we also discussed options for this.

As ever, there were many other contacts we could not follow up in the time allowed but it aptly demonstrates the benefits of a more long term approach to mentoring and training support.

- Dr Mhoira Leng, July 2010.

Don’t forget to visit Mhoira’s blog for more trip reports from around the World, accompanied by wonderful photographs!: mhoiraleng.blogspot.com

(Pallium India is mentioned a number of times…)

Titan Pharmaceuticals is the assignee of this patent which claims a method for treating opiate addiction with a subcutaneously implanted device comprising buprenorphine and ethylene vinyl acetate, a biocompatible copolymer that releases buprenorphine continuously.

Probuphine is designed to deliver six months of continuous, therapeutic levels of buprenorphine following a single treatment.

The arrival of every new therapeutic modality should make us happy.

But we in developing countries are afraid!

Is this another expensive agent that will replace less expensive options and make life more difficult for our people?

“Train me well”, insisted Sicily Sebastian, when she joined TIPS for the six week Certificate Course in Palliative Nursing (CCPN)

“I have important work to do when I get back to Rishikesh”

We were touched by her commitment and enthusiasm.

GPH ambulance on home visit in Laxman Jhoola

Sicily Sebastian comes from Rishikesh in Uttarakhand, a state having very little palliative care. Ganga Prem Hospice, a new venture, promises some hope of solace to the suffering.

Currently, the Medical Director Dr A.K.Dewan, an oncologist from the Rajiv Gandhi Cancer Institute in New Delhi, travels to Rishikesh, 227 kms away, every month, to help with the efforts. Indian American Cancer Association (IACA) is supporting this venture – one of the several projects that IACA is undertaking in India.

Best wishes, Sicily, Dr Dewan, every one at Ganga Prem Hospice and IACA. Pallium India is proud to be associated with you!

You can find out about our Certificate Course in Palliative Nursing (CCPN) and other courses here…

… see palliative care practised at the highest level with limited resources was inspirational.

The April issue of Australia Palliative Link International newsletter features mostly India.

Several authors write about their experiences in Trivandrum, Trichy and Delhi. In the issue:

• Developing collaborations with Pallium India and APLI – Dr Odette Spruyt
• Palliative Study Tour – Dr Anil Tandon
• Reflections on Trichy Palcon 2010 – Dr Sok Hui GOH
• Impressions of TIPS at Trivandrum – Dr Judith McEniery
• A student visit to TIPS – Teresa McEniery
• Mapping the CanSupport Journey – Harmala Gupta
• Palliative Care Snapshot – Dr Naveen Salin

If you are an Indian, it helps to see how others view this country.

If you are not, well, this may prepare you to understand our problems on the palliative care front a bit better.

Click here to download APLI’s April Newsletter…

President Pratibha Patil (r) with Delhi Chief Minister Sheila Diskhit.

Mrs Pratibha Patil, President of India, inaugurating the new Manav Sevarth Trust Action Cancer Hospital in West Delhi on March 2, highlighted the need for palliative care.

We believe this is the first time someone high up in the Central Government Machinery has acknowledged the need for palliative care, quote from Yahoo! News the President’s full speech:

Cancer patients require proper care. To lessen their unbearable pain, palliative centres should be established. Along with it, training programmes should be conducted for doctors and nurses. Their skills should be developed in such a way, that proper attention can be given to cancer patients, as they require considerable support and care. I hope the doctors, paramedical personnel and management of this hospital will fulfill their responsibilities with full commitment and dedication.

Unfortunately, late past presidents of India did not have access to palliative care and have indeed died in greater suffering than their fellow-Indians.

Pallcare India is a Pallium India project supported by:

• Savitri Waney Trust
• Farida and Yusuf Hamied Foundation
• Bruce Davis Trust

APPLICATION DEADLINE: 15 30 MARCH 2010

Read the proposal & apply online…