Healthcare is now the context in which many encounter death and as families and communities have been pushed to the margins, their familiarity and confidence in supporting death, dying, and grieving has diminished. Relationships and networks are being replaced by professionals and protocols.
Let’s bring death back to life
Death and dying have become unfamiliar and skills to the humans, says a new Lancet Commission Report on the Value of Death. And, ironically, our own death is perhaps the only other compulsory life event we must participate.
The report titled ‘Value of Death – Rebalancing and revaluing death and dying: bringing death back into life’ discusses how humans have so fatefully moved away from the skills required to dealing with death and dying, the event and the process. It also puts forth suggestions for communities and governments to reclaim dying from the hands of healthcare systems.
“The role of families and communities has receded as death and dying have become unfamiliar and skills, traditions, and knowledge lost. Death and dying have become unbalanced in high-income countries and increasingly in low- and middle-income countries,” notes the commission.
Healthcare is now the context in which many encounter death and as families and communities have been pushed to the margins, their familiarity and confidence in supporting death, dying, and grieving has diminished. Relationships and networks are being replaced by professionals and protocols.
The report states that only the Kerala model is closest to the ideal palliative care service capable of effectively easing the suffering of terminally ill patients, and their caregivers.
Something very close to the Commission’s proposed realistic utopia has been achieved in Kerala over the past three decades. Death and dying have been reclaimed as a social concern and responsibility through a broad social movement comprised of tens of thousands of volunteers complemented by changes to political, legal, and health systems.
“Some readers might view as unrealistic… (the ideal dying scenario suggested in the report), but there is already a death system that is moving towards to the Commission’s realistic utopia—in Kerala in South India,” says the report. The changes seen in care for people at the end of life in Kerala over the past three decades presents “a complete system change”.
India comprises over one sixth of the world’s population and has around 60 million deaths each year, where basic healthcare is out of reach for millions and many go bankrupt through catastrophic out of pocket spending on healthcare, says the report. It is in here that Kerala has emerged as “a beacon for low cost, equitable, and participatory palliative care”. “The success of this model rests on a series of paradigm shifts relating to how illness, dying, caring, and grieving are viewed within the state.”
The report has dedicated an entire section to describe the growth of a community-driven, home-based palliative care in the state, starting at the very beginning. The model was launched in 1993 as a civil society organisation by two doctors, the present Pallium India Chairman Padma shri M.R. Rajagopal and Suresh Kumar, and a volunteer Asoka Kumar, in order to manage the pain and other symptoms of people with serious illness. The service was based in an outpatient clinic in Kozhikode medical college. Two years later, the team realised the need and started home visits to help bed-bound patients.
The team grew slowly and, in the year 2000, held discussions with local communities through religious organisations, activists, and local businesses, seeking support to help the chronically ill. Communities responded well and initiated their own local networks to identify and support those who were dying or had a chronic illness. This followed formation of Neighbourhood Network in Palliative Care in 2001 to train volunteers, provide access to medical staff, and pool funds for the work. Doctors and nurses undertook the clinical roles, while community volunteers led the service. There were close to 100 autonomous centres running throughout the state by 2007 with a network of thousands of volunteers and donations coming from the local community.
People with incurable illnesses now had people coming to visit them at home, supporting their families with care giving, mobilising community resources and raising funds to keep children in school, provide food for the family, and helping bereaved spouses find work to support their families. Medical and nursing care was provided free of charge, and honest conversations about prognosis were held.
In 2008 the Government of Kerala declared a state palliative care policy, stating that palliative care should be participatory and work closely with community actors, with tertiary, secondary and primary healthcare units providing service in collaboration with local volunteer units. The idea was to embed this home-based, volunteer-led care model at the end of life throughout all primary healthcare centres. At the same time, a media campaign spoke to the public about the needs of those dying or living with chronic illness and role societies play in supporting them.
There are two WHO collaborating centres in Kerala, The Trivandrum Institute of Palliative Sciences for training and policy on access to pain relief and the Calicut based the WHO Collaborating Centre for Community Participation in Palliative Care and Long Term Care.
So, what exactly is the Kerala model (henceforth mentioned as K-model)of palliative care the world so in awe to suggest it as the only definite solution for the traumatic event that the medical community have made out of death, something that used to be so natural in the past? The K-model is a home based palliative care for the bed bound patients or those with life limiting illnesses, or patients for whom care has to replace cure due to the advanced stage of illness, or age. The model provides compassionate care with participation of the community around the patient. The patients continue to live in their own homes and palliative care teams visit them on a regular basis, provide support, medication, resources or reassurance as required, giving equitable care to the family caregivers. When a patient is no longer able to independently function, a whole network falls into shape, which includes family caregiver, paid caregiver, relatives, neighbours, local palliative care teams, local self governments, to name a few.
How practical is this model, and how easy?
The government and community based palliative care efforts in Kerala are designed to work in harmony. The model is easy to follow and inexpensive, with compassionate communities and government policies as the key investments, and caring for the most fragile population the sole aim. The model can easily be replicated in any other part of the world with slight modifications. “Death and dying have moved from a family and community setting to become primarily the concern of health systems.” This had led to futile or potentially inappropriate treatment can continue into the last hours, according to the report,
“Care in the last months of life is costly and a cause of families falling into poverty in countries without universal health coverage. In high-income countries between 8% and 11.2% of annual health expenditure for the entire population is spent on the less than 1% who die in that year.
The report points out that dying is a process, with no set time frame. People may be dying for years, months, days, hours, minutes, or seconds. We understand death as an event but with recent changes in technology, failing organs that previously heralded death can be replaced, making it even more complex.
The dying are whisked away to hospitals or hospices, and whereas two generations ago most children would have seen a dead body people may now be in their 40s or 50s without ever seeing a dead person. The language, knowledge, and confidence to support and manage dying are being lost, further fuelling a dependence on healthcare services.
Deaths from chronic disease have come to predominate with the consequence that dying takes weeks, months, or years. As the familiarity with death and dying has diminished, countries have witnessed a growth in movements aiming to increase awareness or control over the dying process.
The increased number of deaths in hospital means that ever fewer people have witnessed or managed a death at home. This lack of experience and confidence causes a positive feedback loop which reinforces a dependence on institutional care of the dying. Medical culture, fear of litigation, and financial incentives contribute to overtreatment at the end of life, further fueling institutional deaths and the sense that professionals must manage death.
The quality of relationships between healthcare professionals and patients has to shift from the transactional to those based on connection and compassion.
Compassionate communities now exist in 19 countries, including India, Australia, Canada and the US and countries in Europe and Latin America. Networks of care lead support for people dying, caring, and grieving. Such networks are composed of family and wider community members alongside professionals. These networks of people at the end of life, families, doctors, nurses, paid and unpaid carers, and community members challenge traditional power differences, allowing people to participate as equals.
Are there deficiencies in the K-model? Yes, indeed. Funds for example, and need for more trained manpower for instance.
“Engage your brains and your hearts, read and implement evidence-based guidelines, and that is what will improve care,” says the commission. And this is where the world famous Kerala model comes in, to inspire and role model.
On Hero Worship
I am APOLITICAL.
I was born a Hindu. I love being one, not the “My Gods need me to protect them” kind. My religious outlook is pretty simple and straightforward, practical if you must: Respect life.
I am very much a Buddhist, the philosophical outlook that is. I love some aspects of Christianity and Islam. I have spent 10 of my childhood years in a missionary-run boarding school in India. No one tried to convert me.
I spent my last ten years in an Islamic nation, worked in an office surrounded by Arab colleagues. No one wanted to convert me.
I felt safe in both scenarios.
But not anymore. Back in India, reconnecting with old friends, I seriously feel insecure, unsafe, scared for my life, in my own country! So much hatred among communities, many think they are safeguarding a culture that is based on tolerance by being senselessly intolerant to anyone who doesn’t adore the politicians they worship! Hero worship has acquired a new meaning, and post-truth the new religion.
Increasingly, I realise our world is going downhill, culturally, spiritually and emotionally. Harmless conversations, even in the social media and private groups , are impossible. This is no way to live.
One of my old classmates even told me today that half of my name is in Pakistan (Sindh-u). What was that? I asked him if he wanted me to send half of me across the border?
Seriously, is this a progressive nation?
And by the way, I WILL NOT HATE anyone, based on religion, politics, gender or whatever else fancies anyone. YOU SHALL NOT CORRUPT MY MIND. GET LOST, hate-mongers…
There’s a Cat in Our Class! by Jeanie Franz Ransom — Children’s Books Heal
There’s a Cat in Our Class!: A Tale About Getting Along Jeanie Franz Ransom, Author Bryan Langdo, Illustrator Magination Press, Fiction, Aug. 15, 2016 Suitable for Ages: 5-8 Themes: Animals, Dogs, Cats, Diversity, Embracing differences, Tolerance Opening: “There were eighteen students in Miss Biscuit’s class. Until…” Synopsis: Just before lunch, Miss Biscuit shared the exciting […]
via There’s a Cat in Our Class! by Jeanie Franz Ransom — Children’s Books Heal
How life ends a must matter of choice
Just finished reading Paul Kalanithi’s ‘When Breath Becomes AIR’, a well said story of making the right choice at the very end of life. Paul lived a meaningful life, and died in the best possible way he could. Salute his decision to die peacefully, in comfort, surrounded by his loved ones, choosing palliative care right to the very end.
A very emotional story, the life story of Dr. Kalanithi, who died fighting cancer at the age of 36, while on the verge of completing a decade’s worth of training as a neurosurgeon, when he was diagnosed with Stage IV lung cancer. The journey then on narrated with brutal honesty and surgeon-like clarity and precision, this story gives readers an insider view of life and death, from a doctor’s point of view, a patient’s perspective and a philosopher’s sense of exactness.
A must read for anyone interested in life or death or the brief moment that connects and separates both, when breath becomes air, slowly, yet swiftly, with the haste of a breeze.
Do read.
Indeed, April is the cruelest month
Two years and tonnes of tears later, my eyes fill up with hot tears every time I remember my father’s last days. Around this time in 2015 my father was rolled into an intensive care unit and subjected to unpardonable torture they called medical treatment until his soul left his body. I still remember the shock on his face immediately after he passed away. Do everyone who dies have that ‘shocked’ face, or was it only people like him who find it impossible to believe people can be subjected to torture, crucified, inside a hospital by doctors who are supposed to provide pain relief.
My eyes refuse to stop tearing up this month, hope I will recover soon, by the end of April, if not by my father’s death anniversary, April 12.
All I want to say to whoever reads this is, when you know that your loved ones are dying, bring them home, hold hands, talk even when they appear not to hear you, wipe their face with soft wet cloth, hug them and repeatedly tell them how much you love them.
I wish I had done these. I was so stupid not to know wh
at to do when it mattered. It will remain the biggest regret of my life.
Dad, I love you and miss you so very much.
SORRY, a million times…
Want to die better?
Ever since I had the misfortune of watching helplessly my father being tortured to death in a hospital ICU in India, I have not had a single day of peace, for the past 22 months. I started feeling useful only after I got associated with Pallium India, a non profit organisation based in Kerala, which is making painstaking efforts to help patients with life limiting illnesses get basic pain relief. 
A day spent with the medical staff and volunteers of Pallium in January was a beautiful experience, more so since we had the company of Dr. Rajagopal, the founder of Pallium and a couple of guests from the UK, among them senior journalist Jeremy Laurance, who was working on a feature story on palliative care in India.
The link here is the article Jeremy wrote, published on Mosaic, and republished by prominent publishers such as the Independent.
This article was first published by Wellcome on Mosaic and is republished here under a Creative Commons license.
Finding ME
Doors…
DOORS, wooden, old style, great storytellers them all. Love them.
Why did it take me 30 years to appreciate Shakespeare’s Greatness!
It was 30 years ago that I read multiple works of Shakespeare as part of my university course, among them King Lear, which I thought was the most boring. I was only twenty years of age, but was it okay for a literature student to not appreciate a great work by one of the greatest literary figures ever!
And suddenly this morning it all clicked into place, the essence and truth of the theme of King Lear. IT IS AN AGELESS PLOT, but you can only comprehend it fully when you get to live it, in life!
This morning, at 4am,as I reread the scenes, I can’t stop my tears from streaming down , for in this now, the scenes unfold with such clarity and meaning it hurts me real painful.
The story briefly:
The story opens in ancient Britain, where the elderly King Lear decides to give up his power and divide his realm amongst his three daughters, Cordelia, Regan, and Goneril, intending to give the largest piece of his kingdom to the child who professes to love him the most, certain that his favorite daughter, Cordelia, will win the challenge. Goneril and Regan, corrupt and deceitful, lie to their father with sappy and excessive declarations of affection. Cordelia, however, refuses to engage in Lear’s game, and replies simply that she loves him as a daughter should.
KING LEAR: Now, our joy,
Although the last, not least; to whose young love
The vines of France and milk of Burgundy
Strive to be interess’d; what can you say to draw
A third more opulent than your sisters? Speak.
CORDELIA Nothing, my lord.
KING LEAR Nothing!
CORDELIA Nothing.
KING LEAR Nothing will come of nothing: speak again.
CORDELIA Unhappy that I am, I cannot heave
My heart into my mouth: I love your majesty
According to my bond; nor more nor less.
KING LEAR How, how, Cordelia! Mend your speech a little,
Lest it may mar your fortunes.
CORDELIA Good my lord,
You have begot me, bred me, loved me: I
Return those duties back as are right fit,
Obey you, love you, and most honour you.
KING LEAR But goes thy heart with this?
CORDELIA Ay, good my lord.
KING LEAR So young, and so untender?
CORDELIA So young, my lord, and true.
Her lackluster retort, despite its sincerity, enrages Lear, and he disowns Cordelia completely.
Meanwhile, the King of France, present at court and overwhelmed by Cordelia’s honesty, asks for her hand in marriage, despite her loss of a sizable dowry. Cordelia accepts the King of France’s proposal, and reluctantly leaves Lear with her two cunning sisters. Now that Lear has turned over all his wealth and land to Regan and Goneril, their true natures surface. Lear goes to live with Goneril, but she reveals that she plans to treat him like the old man he is while he is under her roof. So Lear decides to stay instead with his other daughter, but soon realizes that Regan is conspiring with her sister against him.
News arrives that Cordelia has raised an army of French troops that have landed.
Tired from his ordeal, Lear sleeps through the battle between Cordelia and her sisters. When Lear awakes he is told that Cordelia has been defeated. Lear takes the news well, thinking that he will be jailed with his beloved Cordelia – away from his evil offspring. However, the orders have come, not for Cordelia’s imprisonment, but for her death.
Despite their victory, the evil natures of Goneril and Regan soon destroy them. Both in love with Edmund (who gave the order for Cordelia to be executed), Goneril poisons Regan. But when Goneril discovers that Edmund has been fatally wounded, Goneril kills herself as well.
As Edmund takes his last breath he repents and the order to execute Cordelia is reversed. But the reversal comes too late and Cordelia is hanged. Lear appears, carrying the body of Cordelia in his arms.
KING LEAR: “Howl, howl, howl, howl! O, you are men of stones:
Had I your tongues and eyes, I’ld use them so
That heaven’s vault should crack. She’s gone for ever!
Mad with grief, Lear bends over Cordelia’s body, looking for a sign of life. The strain overcomes Lear and he falls dead on top of his daughter.
sindhuspace 