This Too Will Pass

I am waiting for the daily supply boat to arrive at the island and take me back to civilization.  It will arrive in the next few hours, bringing rice and other supplies for the people who live here (the population comprising one indigenous village and a handful of hippy hostels and scuba-diving schools).  I lean back against the tangled roots of a mangrove tree and close my eyes.  The vast majority of Koh Rong Saloem, a small island off the southern coast of Cambodia, is inpenetrable jungle – there are no roads and the electricity is available only when the generator runs, from 6pm to 11pm.  I have spent the last few days of my travels alone in a bamboo hut – meditating, walking through jungle, swimming, reflecting.

As I wait on the wooden pier, signs of an imminent monsoon appear.  There is no particular diurnal rhythm to the monsoons on these islands, but they are usually daily, and are always preceded by a hot, strong breeze, and usually in my case by a peculiar unilateral headache (must be my internal barometer).  As the first drops begin, I lean my head back and let them wash over me.  Then there is a jag of lightening and an extended rumble of thunder.  The wind picks up and the rain begins to drive sideways.  Grabbing my rucksack, I run for one of the makeshift shelters the fisherman have built here – really, nothing more than a tarpaulin draped over a rope strung between two palms.  I sit on the floor with some of the Khmer fisherman and together we watch the rain in silence.

The rain on the corrugated metal roof makes a loud, persistent hammering, melodic, in a death-metal kind of way.  Every now and then it increases in tempo.  The sheer force of it is unnerving.  It feels as though the flimsy shacks will be washed away.  Rivulets of orange brown water snake down to the short and merge with the churning waves.  I feel a little afraid of the power of the storm – particularly as I am about to board a small wooden boat that will take around three hours to cross the stretch of water between Koh Rong Samloen and Sihanoukhville.  The boat arrives and I clamber down the slippery wooden ladder on to the soaked deck.  Alongside sacks of rice and boxes of tobacco, I squat with my back against my rucksack.  The boat heaves its’ way from the island, lurching and leaning as it cuts across the waves, and then returning to equilibrium with a thud.  The rain splatters everything, and the waves, whipped up by the winds, spray salt into my face and hair.  I soon learn not to fear the tilt of the vessel when I see the crew and villagers smile and chatter continuously throughout the journey, laughing loudly when someone slips and falls on the wet decking or tries to light a cigarette, only to have it whipped from his mouth and cast into the whirling storm.  I cannot see further than the edge of the boat for the torrential downpour.

The boat pulls alongside the pier in Sihanoukville and we clamber out, drenched and exhilarated.  The storm continues for most of the day. Seven hours later I am in Phnom Penh.   Many of the streets are flooded, the streets gridlocked and the open drains are almost full with brown water and floating waste.  I am losing my earlier euphoria as exhaustion sets in.  Despite my rain cover the water has penetrated my rucksack and soaked everything.  I do not remember arriving at the homestay or falling on to the bed, fully dressed.  But that is how I find myself when I wake early the next morning with the sound of the waking city.  Outside my door, the sun blazes.  My clothes, laid out on the metal roof of the hut next door, have dried.  The streets are dry, the sky clear, the air alive with the smells of cooking from the street vendors and their open fires.  There is no trace of the monsoon.

The storms in our lives come and they go.  In their grip, we are buffeted and drenched, our vision temporarily obscured.  We have a choice.  We can resist the rain and wind, turn away from it, tighten our grip on our possessions and try to protect them at all costs.  Or we can surrender to the storms, recognize their inevitability, and allow ourselves to experience them fully.  The temporary discomfort becomes a memory.

Nobody really knows the path that a dying person will follow.  For all of our technological magistry, we cannot prognosticate with any accuracy, nor can we anticipate the kinds of emotional trauma and healing that dying catalyses for the person and their family.  The only honest pledge that we can make to a dying person is that we will try to be there for the journey, recognising that the process is a dynamic one.  A persons’ choices and priorities have the potential to evolve continuously as they embark upon this journey.  New realisations and understandings are born, and relationships with people evolve and change.

For example, a person believing they have a curable disease may wish to be in hospital.  Once there is understanding that they are dying, this preference may well change.  Florence Nightingale observed that “hospitals are only an intermediate stage of civilization, never intended … to take in the whole sick population. May we hope that the day will come … when every poor sick person will have the opportunity of a share in a district sick-nurse at home”.  Often in the West this “intermediate” stage is seen as the only option, the final resting place for the dying because there is no other place suitably equipped to manage the complexities of end of life care.  In the US where the chief societal challenges include loneliness and living with chronic comorbidities, hospital offers a confusing array of investigative and curative options, with no clear demarcation of when they become inappropriate.

In Cambodia I learned that dying is not as complex as we might like to imagine in the West, where since the 1980s it has achieved some credibility by being designated a clinical discipline all of its’ own.  Perhaps a specialism relies on complexity in order to justify its’ own existence? Or perhaps specialisms become more complex as their proponents increasingly explore the restricted domain of their own ontology.  Almost all the symptoms I observed could be satisfactorily controlled using a relatively limited formulary of twenty or so medications.

Cambodian people readily told me of their losses – children, brothers, mothers – dead from war, famine or disease.  They explain that Phcum Ben, the festival that I wrote about here, is a source of strength because it is shared with all of the people and stops grief being a lonely event.  Many religious practices can be traced back to some original, pragmatic societal need that becomes embedded in ritual – for example, the Muslim requirement for burial within 24 hours of death is thought to have originated as a result of living in hot countries to avoid the distress and potential hazard of corpse decomposition.  A secular society frequently provides few allowances for what seems to be a universal need for ritual and memorialisation of our loved ones after they die.  In the US where the population is largely secular, there are no accepted traditions that support those who are grieving.  No white robes or shaven head marks out those in ones’ community who may require that little extra bit of love and support during their time of acute loss.  In the UK, the black ribbon campaign seeks to reclaim this.  So too does the “swan” symbol used in Ireland by the Irish Hospice Friendly Hospital initiative.  Perhaps these kinds of idea needs to be more broadly considered.  We need a way of knowing, in an increasingly fragmented society where families are often located in disparate places, who in our community is lonely, who is navigating the depths of grief and loss, and who might need our actions and our kindness on this day.

In Cambodia, the challenge lies not in loneliness but in access to healthcare at even a basic level.  When hospital is the place of death it is never because there is nobody at home to care for the person.  It is almost always because the person is awaiting treatment that they cannot afford or that cannot cure their illness.  Misinformation is rife, and the level of education of the vast majority of the population is poor.  Many cannot read, so education about their illness and their options can only be made verbally.  But once herbal and spiritualist options for cure have been explored and have failed, and people turn to medicine, there is a widespread cultural acceptance that the medical opinion is correct.  A few people I have spoken to have voiced their concerns about the close association between sponsorship, drug companies, and medical practice, but these people have tended to be well-educated and to have spent time outside Cambodia in order to obtain these perspectives.

I came here to learn what nurses might learn from how the end of life is navigated in these different cultural contexts.  Naively I imagined the two locations as being polar opposites – San Francisco representing the high-technology, low-compassion society, and Cambodia the low-technology and high-compassion society.  What I have found is that the story is much more complex than this.  In both places, people places suffer from the effects of common societal ills – social and political inequalities, difficulties in talking about death and dying, political barriers to healthcare.  And in both places there are stories of such resilience and tenacity that the abiding lesson I have learned is that the human spirit is strong beyond measure.  Given the right circumstances, we can endure suffering and pain that we may have never imagined possible.  The suffering that people experience as they approach death is not a symptom that can be alleviated – as the World Health Organisation’s definition might have us believe – but a common and unavoidable human experience.  Suffering arises from fear, isolation, attachment and grief.  It is part of the Western malady that we imagine there to be a cure for all ills, a magic bullet that can palliate against the distress of dying.  Whilst we can palliate against physical pain, we cannot hope to palliate against suffering.  

Suffering is a part of our humanity.  We cannot love without experiencing some kind of loss.  Florence Nightingale recognized early in her career that there was no part of her life that she could look back on without pain.  Her subsequent call for action was that we must “never lose an opportunity of urging a practical beginning, however small, for it is wonderful how often in such matters the mustard-seed germinates and roots itself.”  

Tall billowing grey clouds tower skyward across the Tonle Sap river, casting shadows on the palms, houseboats and stilted huts.  The next monsoon is not far away.  But I will be far away from here by then. This has been a hugely important journey for me.  It has opened my eyes to some of the big issues that face humanity both in life and in death.  It has opened my heart to the experiences of people who have nothing, and the tireless spirit of those who support them – the charity workers, humanitarians, health and social care professionals, friends and spiritual and religious guides.  I am leaving this beautiful country and people behind me, heading Westward to face my own storms – but perhaps now with a little more resilience and a little more hope, and certainly with renewed determination to continue to work towards equality of access to end of life care for those who need it, wherever they live, whoever they are, and however they are dying.

Live life when you have it. Life is a splendid gift – there is nothing small about it” – Florence Nightingale

 

 

With many thanks to the Florence Nightingale Foundation for making this journey possible

 

 

On being happy

“Let’s us rise up and be thankful , for if we didn’t learn a lot today, at least we learned a little, and if we didn’t learn a little, at least we didn’t get sick, and if we got sick, at least we didn’t die; so, let us all be thankful.” Buddha.

I have often heard it said that Khmer people are among the happiest in the world.  Every Khmer person I have met is quick to smile, nodding enthusiastically as we have random conversations that neither of us could understand.  They are universally friendly, approachable, warm and genuine.

Today I visited a hospital in near to Kep, in the South of Cambodia, called the Sonya Kill Memorial Hospital.  Run as an NGO supported by HOPE Worldwide, this hospital was established by a German family in the name of their daughter, who died in an accident.  The aim of the hospital was initially to provide affordable care to the Cambodian people – particularly mothers and children.  Since then it has expanded its’ remit and now has an A&E department, cardiology and various other embryonic services.  Payment is via a sliding scale, with those unable to afford payment being able to receive some healthcare.   As I wait to meet the Chief Medical Officer, I sit in the main waiting area of the Accident & Emergency Department – a bright, sunlit  courtyard, flanked with wooden benches and filled with banana trees. A woman in a wheelchair sends a text.  A girl sleeps, curled up on a bench, her mother stroking her head.  There is an abiding sense of calm and peace, despite the nature of this courtyard.  L, the CMO< tells me that he has plans to expand services to train Cambodian doctors to be family practitioners.  Unlike General Practitioners in the UK, their role would be based within a hospital clinic.  Their remit would be to provide “whole family care” – and they would have the entire family on their caseload.  Currently there is no facility for cancer care, and no capacity for imaging other than a basic X-Ray machine.  People suspected of having cancer must travel to Phnom Penh for radiography services, around a 4 hour journey.

80% of the population live in rural areas, many down tracks such as those in the image on the right above.  During the rainy season these can rapidly turn to deep mud and become inaccessible (the image shows my friendly moto driver, apologising after the bike got stuck in the mud and we had to walk four miles in bare feet…!).

I ask the doctor about domiciliary care for those too unwell to get to hospital, or who cannot afford the journey.  The doctor shrugs.  “Here in the South, there is none.  If you are unwell, you come to hospital or you stay at home to be cared for at home.”  I ask him what happens if a person is too unwell to come to hospital, and he tells me that their relatives may come in their place to tell the story.  As in the other hospitals I have visited, intravenous morphine is available while in the hospital, but once a person goes home they are given tramadol, diclofenac, paracetamol.  There is no oral morphine available for patients living outside the reach of NGOs such as DSF.

He also tells me that he is also concerned to extend and expand mental health services.  He sees a lot of unmet need.  Mental health problems are largely unaddressed with the health systems here.  Anybody born in Cambodia over the age of forty will have lived through the years of the Khmer Rouge regime.  Mental health problems are rife; a 2012 study by the Royal University of Phnom Penh revealed that 27% of 2,600 Khmer people experienced symptoms of acute anxiety, 16.7% suffered from depression and 2.7% exhibited symptoms of post-traumatic stress disorder (PTSD) – prevalence of the latter being seven times higher than the worldwide average.  An earlier study of 2000 Khmer Rouge survivors by the Berlin Centre for the Treatment of Torture Victims identified a prevalence of PTSD at 11.4%, while 30% of participants suffered from depression and 36.8% from anxiety.  Cambodia has only one mental health facility, at the Khmer Soviet hospital, and the lack of availability of psychiatrists (after Khmer Rouge, there were only 10% of the number of doctors compared with before 1975) means that often the staff resort to binding patients to beds to keep them safe.  It is rare to see people with severe mental health problems on the streets, although visibly disabled people – landmine amputees, those with horrific scars – are common around the markets where they beg for food or money.

In an essay entitled “The Difficulty of Imagining Other People”, Scarry writes about the connection between our ability to empathise and our ability to permit pain and suffering – hence the importance for those who inflict pain to have undergone a process of distancing from the victim, often removing any reminders of their personhood and individuality in the process.  Of course, the notion of being someone able to inflict torture is an extreme example, but in a sense there is an important lesson here.  We usually think about person-centred care and dignity as being important for the person we are caring for – but maintaining the human inside the person is also essential in order to access empathic insight into their worlds.

Elaine Scarry suggests that physical pain causes the “unmaking” of the human world – a loss of identity and dignity that strips us of our personhood.  Assessment and management of pain in life-limiting illnesses continue to challenge us.  We try to gain peoples’ own words -“burning? stabbing? aching?” – in an effort to narrow down our differential diagnoses – neuropathic? visceral? somatic? breakthrough?”.  Yet it is difficult whilst directly in the grip of severe pain to find the words.  Even more challenging is the need to make this interpretation across cultural and linguistic boundaries.  Scarry also points out that it is virtually impossible to write reliably about pain in order to convey this adequately to another person, as while a person is experiencing the pain directly, it is often impossible to find words to describe it because of the immediacy of the adversive experience.  She suggests the it is only possible to find words for it once a certain distance has been acquired between oneself and the pain.  Suffering (with its’ connotations of emotional, social and spiritual dis-ease) is different.  Compared to physical pain, it is easy to find literature that describes suffering.  Indeed, in Thomas Mann’s 1924 novel “The Magic Mountain”, the fictional character Settembrini sets about creating an encyclopaedia of literature that relates to suffering.  He is obliged to abandon this idea when he discovers that there is no literature that is not about suffering.

If one cannot imagine pain, one is less likely to be motivated to seek to alleviate it.  Pain is what a person says it is.  Yet, if a person cannot speak, or cannot describe their pain, it is incumbent upon us to first, recreate the human that is experiencing the suffering, and next, use ones’ creativity and imagination to develop an understanding of what that pain might mean.  Only then can it be successfully approached.

Frankl famously wrote that man is not destroyed by suffering, he is destroyed by suffering without meaning.  His book – “Man’s Search for Meaning” –  was based upon his experiences of internment in a concentration camp during the Holocaust.  He noted that some prisoners demonstrated an ability, in the face of extreme adversity, to maintain positive outlooks and hope regarding a future world that is free from suffering.  At the core of his theory is the role of love and compassion.  Many of the people Frankl met talked often of their loved ones, and how they drew strength from the connectedness that they felt.  Also significant, was the extent to which prisoners could envisage a future for themselves and their loved ones.  Frankl believed strongly that love and compassion enables humans to exist and even to thrive in adversity – and that this love can be in the heart even if the object of that love is physically absent, as was usually the case in the Holocaust – “Love goes very far beyond the physical person of the beloved. It finds its deepest meaning in his spiritual being, his inner self. Whether or not he is actually present, whether or not he is still alive at all, ceases somehow to be of importance.”   

It did seem to me, despite the picture painted by many of the professionals I have met, that the majority of older people I have met, including those with visible physical disabilities, have been warm, friendly and happy.  I wonder whether this is because those with less resilience are perhaps less visible in the busy streets, whether they remain out of sight.   Resilience is dynamic process in which there is positive adaptation despite significant adversity.  The literature on resilience is fascinating and the debates are heated.  Some believe that exposure to trauma enables resilience and activates self-protective efforts.  Others argue that resilience is an innate trait.  Another perspective is that resilience constitutes an invulnerability to difficult life events, but this challenged by those who believe that resilience can only arise as a consequence of challenges.  When I tried to put the key into the ignition of the wrong motorbike outside the market today, an old woman nearby started laughing, a surprisingly loud belly laugh for an apparently diminutive woman.  She found it even more hilarious when I asked if I could take her picture, rocking back and forth on her crossed legs.

It is said in Buddhism that the path to happiness is to understand the root causes of suffering.  One of the primary sources of suffering is attachment, particularly to ones’ ego. I have been reflecting a lot on the deep involvement of families in the care of dying people here.  It is not just that extended families tend to live, eat and work together.  There is more to the story than this.  I believe it relates to the fact that the Khmer value highly the family structure – indeed, it is said that the bond between a parent and child is far more important than the marriage bond.  As such, all decisions are taken as a family, all suffering is experienced as a family, all happiness is experienced collectively.  And in this collective, relational way of being, there is less of a place for ego.  To me, it seems that many people here are genuinely grateful to be alive.

 

 

 

 

 

 

 

 

 

 

 

Hungry Ghosts

A cluster of people are sitting on a large mat by the river.  At the centre of the group there is an old woman, her head shaved, wearing white robes.  My companion on this walk is Kim, a smiling Cambodian man who runs a small homestay near the Kampot river.  I ask whether she is a nun and he tells me that a shaved head and white robes are a traditional sign of mourning.  The purpose, he explains, is to show respect for the person who has died, and also to mark the bereaved person out for their community to be able to support them with food and care.  More distant relatives such as cousins may also shave their heads, but more commonly will identify their grieving status through a scrap of black cloth tied to the right arm.  She is smiling, and surrounded by family of all ages, and pots and baskets of fresh food – grilled squid, rice, banana flower salad and plates of durian fruit and custard apples.

When a Cambodian person dies, it is customary to keep the body at home for three days.  If one can afford it, this is extended to seven days.   During this time the person can be visited by any friends and family who wish to pay their respects.  Very occasionally, the body is kept at home for longer, for example if waiting for a person to arrive from far away.  For obvious reasons, this is not ideal – the temperature regularly reaches the 40s here, and very few people have access to air conditioned rooms.

After this, the funeral ceremony takes place.  Usually the person is placed in a coffin and transported to a forest, where a funeral pyre is built.  A monk from the local pagoda will attend and recite Buddhist prayers and blessings, asking for the person to be forgiven any wrongdoing and to be blessed with a reincarnation into a better life.  The corpse is then burned, and the ashes and bones are placed in receptacles to be taken to the Wat, or Buddhist temple.  A further ceremony takes place 100 days after death.  This is a time of celebration as the first ceremony is often a sad occasion.  Again, a monk will attend and the congregation will share their wishes for paradise for the deceased.

Once a year in the lunar month of potrobot, there is a national ceremony for the dead, known as Phcum Ben.  Kim describes this as the “birthday of the dead people”, and he says it is often referred to as the festival of “Hungry Ghosts”.  “If a person has done bad things in lifetime, like killed chickens and dog and doing unkindness, then they have bad karma and will be in hell.  It depends on their mistakes.  If angry person, then also in hell”, Kim explains.  “Also, if people did not have relatives performing well-wishing ceremony at time of death, then person might also be in hell”.  Phcum Ben is for opening the “gates of hell” and allowing people to enter paradise.  During this period it is customary to return to ones’ hometown and prepare offerings of food and drink, and pray for the deceased.  If one does not do this, the consequences are dire.  The dead person will remain angry and may bring bad fortune on their living relatives.  Phcum Ben is one of the most widely observed of all the Cambodian festivals.

It has been suggested that the popularity of the festival is a result of the recent Cambodian experiences of “unnatural” deaths – the 150,000 killed by the American bombing in the East of the country during the Vietnam war, the neglect, torture and systematic killing of around 10 million people during the Khmer Rouge regime in the late 1970s and the widespread starvation of the early 1980s.  All of those who died during these times were unable to have a proper funeral.  Further, one’s state of mind at the moment of death is considered very important – if one does not have a wholesome mind – vinnana (Pali) –  this will influence what happens in the next life and may make the transition to reincarnation difficult.  For this reason, the duty of family members when someone is approaching death is to ensure that they are surrounded by loving-kindness – metta and compassion – karuna – to enable the dying person to achieve this wholesomeness of mind at the moment of death.  It is thought that many of those who died will have been forced through torture to tell lies, to incriminate others, to manifest hatred towards their incarcerators.  There will have been no calm state of mind for at the moment of death.  As a result, it is believed that many will be condemned to remain in a liminal state, in the margins of the world between hell and reincarnation.

Memorial Stupa at Choeung Ek – more commonly known as “The Killing Fields”

There was no way to ritually mark the deaths of these people – many of whose bones have still not been recovered from the extensive mass graves that surround the country – or to wish for them to have peace in their next lives.  For many, the deep wound inflicted on this country’s people led to mental illness, alcoholism and drug addiction, domestic abuse and political corruption.

Drunk man leans, swaying, against statue outside village Wat.  His abdomen and legs are covered in deep scars.

In more recent years, the festival has come to symbolise a time of remembrance and memorialisation for all those who have died, as well as an opportunity for the many people who still do not know the whereabouts of the remains of their deceased loved ones.  As well as offerings of rice, fruit, sugar water and tea, generating a feeling of compassion for the deceased is meritorious: “when the recipient is someone whom one can esteem, the feelings of sraddha, respect, and joy, naturally arise. These are among the most noble feelings one can have, and thus it is perfectly appropriate to value these gifts above others” (Heim 2004, 81–82).

 

Flowers on sale at the market for placing at shrines

 

The ceremony has as much to do with the living as with the dead.  It is a reciprocal event.  The living consider that their ancestors are the guardians, markers or symbols of their own moral bases. – hence the need to appease any ancestors who may have harboured negative emotions.  The tradition of returning to ones’ home town is significant – this is a celebration of sangha, family and community.  According to Kwon (2006)  “home” is the “ideal place for remembering the victims of mass death, if there is such a place, might be home, where they can be remembered as ancestors . . . . It should be a place where kinship, free from traditional ideologies and political control, reconciles with the universal ethic that all human beings have the right to be remembered. The revitalized memory of mass death relies on this universal norm as well as on the morality of local kinship unity”.

Rituals such as Phcum Ben may offer a symbolic means of protecting oneself against death anxiety.  In Cambodia, reminders of death are everywhere – from the memorialisation of the war and genocide, to the many disabled and disfigured beggars that line the cities streets.  Strength is drawn from religion, tradition, and sanctification of the family and the community.  The Phcum Ben festival aims to help these wandering spirits, these hungry ghosts, to be finally put to rest.

 

Incantation for the Hungry Ghosts from the Tirokudda Suta, translated by Davis (2006):- 

They stand at crossroads and outside the walls
Returning to their old homes, they wait at thresholds
Because of karma, no one remembers them
When an abundant feast of food and water is served.

Those who feel pity, therefore, at the right time
Give truly pure food and drink to their relatives, rejoicing
“This is for you; may our relatives be happy.”
Spectral relations gather and assemble.

Thoroughly pleased with the food and water, they reply
“May our relatives who provide for us have long lives.
We are honored; giving is not without benefits.”
There is no plowing in that place, and cow-herding is unknown;

No trading, no buying, no selling with gold;
Dead preta survive there on what is given from here.
Just as water poured on a hill flows down and around it, sustaining the land all around, so a gift from here benefits ghosts in precisely the same way.
“He gave to me, he worked for me, he was my friend, relative and companion.”

Give properly to the ghosts, remembering past deeds.
The weeping, mourning, and laments of relatives are useless
To those who remain in such a way.
But proper gifts dedicated to the sangha become useful to them Immediately and for a long time.

The duties toward relatives have thus been shown:
Veneration for the ghosts,
Strength for the monks
And no small merit for you.

Offering of a cup of Lipton’s tea at a household shrine

 

 

 

 

 

 

Feeling the Love

I have been staying with Hok, and his three siblings and mother.  They are a Cambodian family who run a homestay in the South of Phnom Penh.  I realise that my perspective on palliative care since I have been here has come with directly from the staff at DSF, or through translators who work full-time with the staff.  I am curious to find out more about the end of life as perceived by Cambodian people, and also how and whether Buddhist practices and beliefs help people to prepare for death.

Hok and I go for a walk one humid evening, and sit down to a meal of lotus root stew and banana flower salad.  Hok tells me that his brother died of throat cancer two years ago, at the age of thirty three.  When I explain the work of DSF he is surprised – he had no idea that such a thing existed.  Like many Cambodians who are able to pay, Hok’s brother went to Vietnam for treatment after losing faith in Cambodian doctors.  However despite extensive disfiguring surgery which included resection of his vocal cords, the cancer continued to spread.  He was admitted to the Calmette Hospital and died there, 6 months later, “in much pain”.  When he was dying, only some members of the family talked about it, and they rarely if ever included his brother in these discussions in case he gave up hope and stopped eating and trying to live.  But Hok thinks that this made it more difficult because his brother was not able to say what was important, and could not prepare for his future because he had not been able to discuss what this future might be.  I ask Hok whether his faith helps him and his family with difficult times like this, and am surprised to learn that he is a Christian, although the rest of his family are Theravada Buddhists.  He tells me the story of how this came to be.

When Hok was young, his family had very little money.  They could not afford to send him to school but they were keen for him to learn English as they considered that this was a potential way to secure his future.  A Catholic Charity were running a small English-speaking school in Phnom Penh, near to the Khmer Soviet Hospital, at that time.  In exchange for lessons they wanted no recompense, other than for students to accept the Christian teachings during the time of their schooling.  Hok’s parents were keen for his education to progress and they readily agreed to this.  Bol himself agreed, although at that time he secretly wished to follow in his father’s footsteps and become a bhikku, or monk, and live at one of the Wats surrounding the city.  Accordingly, Hok began his schooling and concurrently learned about the Christian teachings.  One day, one of the priests baked him a cake for his birthday and the teachers and students sang to him.  he can’t recall which birthday it was – maybe 11, maybe 12, he shrugs.

For many Cambodians, birthdays are not recognised.  This was the first time Hok had celebrated a birthday.  He tells me that something happened to him in that moment, that he was looking at the candles on the cake and at the faces of the monks and students and that he felt real love from them, a love that did not demand to be repaid, and a celebration of his life as holy.  He decided in that moment that he would become a Christian and continues to pray at the Church where he was schooled.

During the Khmer Rouge regime, many respected Buddhist teachers and monks were killed.  They were among those targeted as threats to the revolution, and the books and temples of Cambodia were very nearly all destroyed.  Today, the main way for a child to learn Buddhism is to join a pagoda, often as a boy, to live as a monk.  Many boys join the pagoda because their parents cannot afford to raise them.  For women it is not so easy, as to be recognised as a Buddhist one must surrender all worldly goods to live in the pagoda.  Yet with ongoing struggles against poverty and illness, it is rare for a woman under the age of fifty to be able to choose this life.  There are no Buddhist teachings for younger women other than what they receive at school or from their parents.  The Cambodian women that I meet tell me enthusiastically that they are Buddhists.  They practices chanting scripts in Khmer and have shrines in their homes, but rarely meditate, having never been taught to do so, and in any case there is rarely time alongside other responsibilities such as working, preparing food, childcare and tending the sick.  Even though Buddhism remains the faith of the majority of the country, active faith practices in the laity are increasingly less common.  Women who do choose to become nuns in later life are often marginalised by Khmer society.  Many Cambodians I meet are skeptical about the pagodas.  The Wats are often elaborate buildings inlaid with intricate carvings and topped with gold spires.  For some, Buddhism is a serious lifelong practice dedicated to caring for the suffering, but for many, it offers an alternative to the daily struggles faced by the laity.  Suffering is a part of life here, this is rarely questioned.  Indeed, almost all of the Cambodian people I have met so far are curiously calm and smiling.  Unprompted, they tell me stories of their losses with an acceptance and an equanimity that humbles me.  It certainly puts my own recent loss into great perspective.

Hok draws his strength from quiet contemplation.  When he describes this practice to me it sounds remarkably similar to Buddhist meditation.  Hok tells me that there is “pretend love” and “real love”.  What he saw and felt on that birthday has affected him in such a deep way that it will stay in his heart for the rest of his days.  Since my conversation with Hok I have been thinking about the Christian origins of the hospice movement, the close connection of nursing and monastic traditions, the place of suffering in both faiths and in the “scriptures” of palliative care.  Both Christiantiy and Buddhism advocate compassion, or real love, as a way to challenge sin, or egotism.  And both faiths are often associated with palliative care.  Many increasing number of services inspired by Buddhism are diffusing into Western palliative care, as well as Buddhism-influenced practices such as mindfulness, acceptance and commitment therapy and mindfulness-based stress reduction, often interpreted through a Western lens and in a secularised way.  The etymological origin of compassion is “to suffer with” somebody, so as a foundation for compassion it is necessary to be able to sense a person’s suffering.  This requires that we open ourselves to feeling some difficult feelings – there is no avoiding this.  It hurts to sense that another person is suffering if we open our hearts to that reality.

Love is rarely considered to be part of a nurses’ role – indeed, many continue to believe that you can become “too close” to a patient and that this opens you up to suffering, vicarious traumatisation and compassion fatigue.  But one could easily substitute the word “love” for “compassion” in the literature.  It is impossible to make someone love another person.  But the word “love” is used in so many situations – we can love our children, chocolate, our partner, our friends, our gardens – and yet we understand this use of the term because we hear it talked about in context.  The context of love for a patient is one further form of love that we may wish to consider.  The priests felt real unsentimental, open-hearted love as they gave cake and sang songs for the young Cambodian boy who had come to learn in their school.  Many of my heroes describe seminal moments in their lives when they felt unconditionally loved or cared for by another person.  BJ Miller describes his response to the nurse who brought him a snowball from outside the hospital during his prolonged stay following a severe injury.

I am not a religious person but I do think of myself as spiritual.  I would not advocate religion as a means of addressing the so-called “compassion deficit” – there is authenticity and goodness in people of all faiths and none, and the opposite is also true – adopting a religion or being an agnostic or atheist does not itself make a person good – compassion lies in one’s actions and their origins and motivations.

Talking to Hok today I learned an important thing about the nature of authentic love and the profound potential that it has to influence another person.  Compassion does not refer to “idiot kindness” – a response to suffering in which saccharine niceness is considered part of the nurses role (which is more usually a performance, a form of emotion work).  Compassion can only exist as a result of a real connection with a patient and an authentic wish to make life better for them, and to ease their suffering or to help them create meaning out of it.  And this, I believe, can never be taught until one has experienced for oneself the feeling of receiving another person’s unconditional love.

A Word About Waste

Cambodian people know a lot about minimising waste.  When a meal is cooked at one of the street stalls, over small charcoal burners, practically every part of the animal goes into the meal.   The market stalls offer a selection of chickens’ feet, cow intestine, frogs, congealed pig’s blood, embryonic eggs found in the chicken’s womb, fish heads and grasshoppers.  I have long since given up trying to guess what is in tonight’s bowl of steaming food – it is always delicious, and since few people speak English I tend to just point at a pot and get given a bowl of something or other.   The smell of fermented fish sauce hangs in the air.  This is made out of any remaining parts of fish once the edible flesh has been removed, fermented in strong brine for up to a year until it reaches the requisite level of pungency.

When meals are eaten there are rarely any leftovers.  At the Night Market in the North East of the city, barefooted children scurry around the mats on which many people sit and eat together in the evenings.  The children are looking for leftover food; they slurp the remainder from plastic cups and scrape rice grains from plastic trays.

Once the leftovers have been scavenged, staff at the market dispose of the rubbish in piles on the streets.  These are collected by municipal refuse collectors although this is sporadic.  While the piles of rubbish await collection, they are often picked through by local children.

The approach to medications used by the DSF is to dispense precisely the number of tablets required before the next scheduled visit.  This is effective in two additional ways – firstly, non-attendance at clinic is very rare as it would mean people would run out of medicines.  Secondly it enables accurate review of exactly what has been taken – tablets are removed from packs by the nurse and put into small plastic bags labelled in Khmer with instructions.  The monthly medicines budget is around $3000 and there are approximately 50 patients on their books at any one time.

It has been estimated that in the UK over £2 billion a year is spent on unnecessary, expensive or inappropriate treatment.  Furthermore, it is thought that around £300 million is spend by the NHS on wasted medications, as often happens when a person’s medication regime is changed and medicines get stockpiled at home, or when repeat prescriptions are issued without review.  To put this in perspective, the Gross Domestic Product for the whole of Cambodia last year was around $50 billion (approx £37 million).  One of the main ways in which waste can be reduced is through adequate support at the point of prescribing.  It is also essential that the effectiveness of medicines, and any adverse effects, are closely monitored, as people may decide to stop their medicines if unsupported.

In the UK we would do well to learn from Cambodia about making the best use of resources – not just medicines and food, but time – perhaps our most precious of all resources, and often under-appreciated until we realise our moments here are finite.

 

Tik-tik

First, we see a man who has come to the DSF as an emergency.  His pain is poorly controlled.  He was last seen a fortnight ago.  His wife tips out the plastic bags containing his medications.  The nurse and doctor count them carefully – it transpires he has been taking his immediate-release morphine in place of controlled- release.  This is easily rectified.  He also has “coquet” – french for “hiccups”.  Again, a tweak of his antiemetics and he is sorted.  He leaves with his wife, smiling.

Next, I am at the CCCA, the Cambodian Catholic Care Association.  It is a fifteen bedded unit, it was originally established to care for people dying with AIDS.  More recently the incidence of AIDS has begun to reduce (and in response, so too have the NGO support for screening programmes…so this may not be the end of that story).  Now the CCCA cares for people with a range of conditions, both adults and children.  Today we have a full schedule of people to review.  The CCCA clinical team comprises two full time doctors, three nurses and a few student nurses.  The charity are funded by a Catholic society in Italy, and the hospice has an Italian feel to it.  A bright courtyard leads to a veranda, tiled in white, with large wooden doors that open on to a spacious reception room.  The room is filled with patients and relatives waiting to be reviewed.  Some are resident at the home, others have come from the provinces.  Unlike DSF, the CCCA are able to provide domiciliary support to the more rural areas of Cambodia and spend alternate weeks in three different provinces.  This means, however, that patients living in rural areas can only expect a domiciliary visit once a month.  For those with unstable symptoms, this clinic offers an opportunity for symptoms to be reviewed – again, by proxy – by a family member attending if the patient is too unwell.

The first two are new patients in the hospice.  The first is a smiling man who appears to be in his early sixties.  During the consultation we discover he is 82.  The Cambodian nurses laugh and smile a lot at this, and when he tries to remember how many great-grandchildren he has.  He thinks it is around fifty but can’t be sure.  The doctor tells me that is is very unusual to see an elderly Cambodian person but when they do appear, they are usually very, very strong people.  He is no exception.  Diagnosed with inoperable tongue cancer the previous year, he has been in pain for several months, having only been given paracetamol at the hospital.  When asked about the intensity of his pain, he says “tik-tik”.  This means “just a little bit” and I have heard it said a lot by patients.  His wife disagrees and scolds him softly.  Eventually he admits that the pain is bad when he eats, and a discussion ensures about lidocaine, mouth care, morphine.

The next patient has suspected oral cancer as well, but because he cannot open his mouth he has not been able to have a biopsy.  Even if this had been possible, his family would not be able to afford any treatment.  The CCCA are able to offer financial support to three people each month to have surgery, so there are difficult decisions to be made.  He is here at CCCA but does not want to die in Phnom Penh, he wishes to return to Kampot Province to be with his family.  When the French doctor asks the Cambodian doctor whether he is aware that he probably has cancer, she says no, but he does realise the seriousness of his condition.  He is so thin that every rib protrudes, I can see his pulse and his slow, shallow breaths.  He swallows it with some difficulty, wincing.  In Khmer, there are very few words that patients use to describe pain, so often the doctors have to suggest, using similes, what the pain might feel like.  Systematically, an assessment is taken.  Does it feel like insects? Like fire? Like electricity? He taps his outstretched fingers against his head to indicate that it is like electricity.  His hand then moves to point at his cheek, his chin, then down to his stomach, even his legs.  This is “everywhere” pain.  Faustine tells me this is very common, and may be a way to try and convey that the pain is very severe.  His pain is not tik-tik.  His mouth only opens a small amount, and his tongue is coated, cracked and bleeding.  A plan is made, and he is given a morphine tablet to see if this helps while we are here.  Lidocaine, nystatin…the list is drawn up for his son, who listens closely.  Next week his son will return on his behalf to report back on how his father has responded to these new medicines.  It is a great responsibility, as it is unlikely that the doctors can review him directly for another month.

The incidence of head and neck cancer has greatly increased in recent years, as a consequence of smoking, chewing betel nut, and alcohol.  There are also many cancers related to environmental pollution (the link gives an idea of the scale of the problem and its’ impact on public health more broadly).  Two children under the care of CCCA have metastatic osteosarcoma.  One of them, a 12 year old boy, weighs only 22kg but is needing 360mg of morphine per day to control his pain.  Pollution is a significant problem.  Ground deposits of cobalt contribute to background radiation, and the emissions from industry and traffic are big problems in the city.  I have woken every morning coughing and I have only been here for four days.  Further, the groundwater is heavily polluted with pesticides that are often brought in from neighbouring Vietnam – which has the highest incidence of cancer per population of anywhere in the world.  The piles of colourful vegetables that I have been admiring in the old market apparently contain dangerous levels of a range of carcinogenic chemicals, and these are further concentrated in meat and poultry.  I am told that sea fish are the only properly safe food to eat here.

 

The last man we see is lying flat on the bed, one arm folded across his eyes, perspiring.  He smiles weakly at us as we enter, carrying a plastic stall each.  But he is not the patient.  He has arrived here from a province in the West of Cambodia after a long journey and was feeling so unwell on arrival that the nurse has put him to bed.  He is the sole carer for his wife who has metastatic breast cancer, and he is having difficulties balancing work – he is a labourer – and care.  The couple have financial difficulties and his hours are long.  We piece together the history and discover that she is sleeping for most of the time and whenever awake she is in extreme pain.  The team amend her prescription and dispense the medications into small bags labelled with instructions, and discuss with him how he might encourage support from other members of his family to enable him to have some respite.  A domiciliary visit is scheduled for the following week, approximately 3 hours away.

I am humbled by the tireless work of these doctors and nurses.  For all of Cambodia there are just four doctors with palliative care qualifications, and DSF and CCCA are the only palliative care services that exist – both are outside government provision and rely entirely on donations.  There are profound needs here, to increase the accessibility of morphine, to challenge the unregulated prescribing of sub-therapeutic and potentially harmful chemotherapies, and to expand domiciliary provision of basic symptom advice.

The clinical work is not complex here.  The priority for the vast majority of these patients is basic pain control, closely followed by financial concerns.  Some staff believe that until pain is controlled and they feel financially secure, patients and families do not benefit from “talking about feelings.”  Maslow, again.  Faustine puts it like this: “so, we can talk and talk for one hour or maybe more about this and that and how there is no money and no work and the children will have nothing when they die and then what? All that talk, and there will still be no money.”  So, the team do what they can, which is to control the pain.  The rest they know they cannot change, but at least this is something towards easing suffering.

PS. I have never loved the NHS more than now.  Joni Mitchell was right when she observed “don’t it always seem to go, that you don’t know what you’ve got til it’s gone.”

Walking a Mile in Their Shoes

“The very first requirement in a hospital is that it should do the sick no harm.”
― Florence Nightingale, Notes on Nursing: What It Is, and What It Is Not

I have just left the office on foot before the rain begins.  This is not like rain in England. When the first few drops appeared and I saw people don flimsy plastic capes, my immediate response was that they should try living in the Pennines.  Then the real rain began – great splats of water that soon drenched me utterly.  The sound is unlike any rain I have heard – the variety of building materials here mean that there are different tones made as the drops land – a percussive symphony of clangs and tings and slaps.  The mud and rubbish on the streets mingle into large brown puddles – avoided by the moto drivers, splashed in delightedly by the children.  Gritty mud oozes between my toes and I feel vaguely disconcerted by the simultaneous odour of human waste that emanates from the swollen ditch lining the alley.  The monsoon season lasts from May until November.  For the farming communities, the rain is literally the giver of life.  In the city, rain provides a welcome respite from the intense heat of the day and the tuk-tuk drivers tack plastic sheets to the sides of their vehicles and continue to offer their services.

Today it was the palliative care clinic in the DSF office, located near to the Tuol Sleng Genocide Museum.

Before clinic began I visited the museum, and although I had known some of the facts about the Khmer Rouge regime I was unaware of the scale of the atrocities, and the exhibits were both unsettling and desperately sad.  The events of 1975-1979 are still in living memory for many people in Cambodia, and people here are able to readily recount the members of their family who perished under the regime.  Mortality is highly visible here.  The buildings of S21 are in the centre of the city, its’ barbed wire perimeter runs alongside a road of homes, cafes and food stalls.

According to Terror Management Theory, the proximity of death catalyses powerful psychological defence mechanisms such as seeking to enhance ones’ self esteem, or engaging in activities that will secure symbolic immortality.  Yet critics of TMT claim that it has never been studied in a cross-cultural context, and little qualitative work exists on the subject.  A paper written in 2010 found that many Cambodian survivors of the regime  experienced  khyâl attacks, during which there was great fear that death might occur from bodily dysfunction.  It has been suggested that Cambodian people are still experiencing a collective post-traumatic response.  Perhaps this shared cultural memory is one reason that it is culturally much more acceptable for family members to be in charge of decisions and discussions about serious illness and its’ management.  I am told that it is rare for conversations about death and dying to take place, and even more rare for these to include the patients.  Commonly, if the family are able to afford it, treatment with curative intent will be continued until death.  This surprises me in a predominantly Buddhist country and I wonder whether the legacy of Khmer Rouge has altered in some way the attitude of people here towards death.  Death of a quarter of the countries population, accompanied by the systematic dehumanisation, displacement, torture and incarceration of those who remained, is not the kind of “death” one usually imagines when gently instructed by Buddhist scriptures to meditate on impermanence.  So Buddhism has taken on its’ own form here, one in which lay people pay ever-increasing amounts of money to the monks on the streets in the hope that the next life might be easier , more comfortable and more peaceful than this one.  Many offering and prayers are made for the sick person, by their family and friends.  Every home, however small, has a shrine.

The wife and sister of a man recently diagnosed with liver cancer come to the clinic.  They are here for the first time, after the patient was identified whilst in the hospital where he was diagnosed.  They speak animatedly about him and I don’t need to speak Khmer to get the gist of the situation.  They have brought his CT scans and the huge tumour is shockingly evident even for a radiology novice.  They describe a catalogue of problems – he is anxious about the future, experiencing nausea and vomiting, has uncontrolled pain and cannot sleep.  It has been this way for one week.  They have brought his current medicines – two blister packets containing nutritional supplements.  There are no medicines for pain.  A plan to control the symptoms is formed and explained, and medicines counted out and dispensed.  She will be able to come again next week for his care to be reviewed.  It is unlikely that the team will be able to see the patient himself as he lives outside Phnom Penh and at present they have little capacity to provide domiciliary support beyond the city.  They do, however, offer this clinic and telephone support which is highly valued.  They are forging working partnerships with Cambodian Catholic Care, a hospice established for people with HIV/AIDS in Phnom Penh, whose two doctors alternate visiting the provincial areas of Kampot, Mondulkiri and Battambang.  We will be visiting the hospice tomorrow.

The Cambodian doctor who sees them prescribes the medicines without seeing the patient.  Running this clinic means the team can review patients by proxy, and it works well as many relatives prefer to keep discussion of the illness and its’ management out of earshot of the patient, who is often perceived to be to weak to be burdened with such things.  Thus medicines are prescribed based on the reports of the relatives.  Every person who attends the clinic has one thing in common: poverty.  For the wealthy in Cambodia, treatments for cancer are often sought from more medically advanced countries nearby, particularly Singapore.  As a consequence, there is little pressure from the upper echelons of society to improve healthcare systems here, and the population who live in predominantly rural farming communities, are often not empowered to speak out or ask questions about their disease.  Hospital stays, though expensive, are rarely if ever challenged by patients who believe strongly in the authority of the doctors.

One of the doctors tells me that when she began work for DSF she felt frustrated a lot of the time, about all the people who could not be helped.  But then she realised that there is something important about doing “enough”, and giving what you can give.  This sometimes means accepting less than perfect situations or needing to be highly adaptable, but is the only way to sustain ones’ own emotional wellbeing in these challenging situations.

In “To Kill a Mockingbird”, Harper Lee observes that “you never really know a man until you understand things from his point of view, until you climb into his skin and walk around in it”.  This is though to be the origin of the famous saying about walking a mile in another persons’ shoes, used in several papers written about communication skills and empathy.  As I walk through the rain I think about my feet, aware of each cracked paving slab or pudde, the discarded chicken bones and green coconut shells crushed under my toes.  It is easy to feel sympathy here, to join one patient’s husband in his anger and grief as he describes how the hospital has charged £700 for treatment that is not working and he no longer can afford to keep his wife there.  It is also easy to try and seek out solutions which do not exist.

I reach the homestay and let myself in through the padlocked door.  I wash the mud from my feet, and my toes reappear.  The rain hammers on the metal roof and streams in brown rivulets through the courtyard below.  Is it really ever possible to walk in another person’s shoes?  And would one mile necessarily be the same as the next, given the ever-changing nature of experience?  Or is empathy the experience of ones’ own emotions that respond to the other person, a kind of interdependence in which each person’s emotions belong to them alone, although they may be different or similar.

 

 

 

 

 

 

Douleurs Sans Frontieres

“And lo, in that house of misery, a lady with a lamp I see” – from “Santa Filamena”, by Henry Longfellow

For some reason, I woke up this morning thinking about Heidegger.  This doesn’t happen to me very often, I put it down to extreme jet lag.  Cambodia is 14 hours ahead of California, so although my journey here took around 18 hours, I arrived over a day after I left.  I still haven’t worked out the implications of this for my longer-term prognosis.

Anyway, Heidegger was on my mind, and his idea about human becoming.  This notion is a little opaque in Heidegger’s original words, but Rosemarie Parse presented an alternative model of nursing in 1981 which adopted the idea of human-becoming.  The theory centres around three themes: meaning, rhythmicity and transcendence, each of which is permeated by four postulates – illimitability, paradox, freedom and mystery.  Parse’s theories require that nurses focus on quality of life as it is experienced and lived by people and their families.  The goals, according to Parse, are to accompany the person on their journey which is acknowledged to be ever-changing, and in which the person is continually making choices about how to live and how to interpret their living.  In constant interaction with their environment, the person creates meaning through their interaction with others and with the world around them.  This meaning is in a state of flux and the world is created by the person just as the person is created by the world.

I had no time to think further on the matter – I was due to be at the offices of Douleurs Sans Frontieres by 8am.  I arrive very early (I realised yesterday that although some streets and numbered, and some houses, these numbers are not sequential.  Some streets have both a number and a name).  I watch the streets from the third floor as the roads and alleyways gradually fill with sounds and smells.  A woman is sweeping a tiny tiled area at the front of her apartment with a palm brush.  There is a shrine tucked between two small potted trees and a fronted cabinet of dusty cans of drink, a small symmetrical pile of spiky fruit.  Two plastic chairs are placed beside the cabinet.  She will spend today selling her produce from the front of her apartment, as will many others.  There are shrines everywhere, with pots of gravel and clusters of burning incense.  Around 95% of Cambodia’s population are Theravada Buddhists.  Nearly all Cambodian men over the age of sixteen spend some time as bhikku’s; joining and leaving a sangha is a matter of choice and is very easy.  Spending just one year as a bhikku is considered to bring honour to ones’ parents.  Monks provide the lay people with opportunities to gain merit for reincarnation, although in recent years this has been fraught with corruption as this merit has become synonymous with money.  Buddhism exists alongside other belief systems including animism and Brahman practices.

Belief systems strongly influence the experience of dying with cancer.  For example, beef is considered to be a good food for growing strong tissue, but for many Cambodian’s it is presumed that this feeds the tumour as the meaning of tissue and tumour are similar.  It is therefore common to find terminally ill people being fed only on rice soup as it is believed that this is the purest and safest food.  Many also take traditional medications for their cancers.  On the whiteboard in the DSF office there are figures representing monthly activity – some of these are people they strongly suspect will return to hospital with problems, who have perhaps decided to try traditional medicine first.

The hospital is the source of the majority of patients supported by DSF.  They are identified in the Oncology Unit at Calmette and Khmer Soviet hospitals, and once the team have met them, they are followed up when they are home again.  Home is where most people wish to be.  Here, the decision about chemotherapy is rarely questioned by clinicians, patients or families.  There is no free healthcare and families must fund treatments themselves.  This often means that they can only afford a sub-therapeutic dose of chemotherapy, and often they stop treatment when they run out of money.  One patient we saw this morning in the hospital had undergone two cycles of six before having to discontinue her treatment.

For people seen by DSF, there are five categories of payment.  On the first consultation, a social assessment is made.  This includes factors such as income, number of dependents, the type of house, employment status and so on.  The wealthiest are category “A” – these number around 10% of consultations.  Category A patients are charged $40 per week and this includes medication and consultation, regardless of the quantity of medication that is required.  There are a further four categories along a sliding scale.  The vast majority of patients are in the “E” category, and there is no charge for service for them.  The income from patient payment is around $1600 per month.  The budget for drugs alone is twice this, and then there are the costs of staffing the service and other overheads such as the office and the single vehicle used by DSF.  “This revenue covers 15% of budget”.  The system is flexible, and if they cannot pay on one visit that is okay, perhaps next visit they can pay more.  If more people accessed the service who were able to pay, it would help to balance things out, but in general those people who are better able to afford care choose instead to spend their money on curative treatments, hydration and parenteral nutrition.

We visit the hospital first.  The rooms have six beds and an extra camp bed has been put up in the centre of the room for an extra patient.  Family members camp out in the hospital grounds.  There are no healthcare assistants – all “care” such as washing and feeding is done by family members.  I ask what would happen if a person came here with no family, and am told “there is no such thing, everyone has family here”.

DSFs role in the hospital is twofold; firstly, they visit to advise and support the attending clinical team.  Secondly they use this as a means of identifying those patients who require follow-up once they are in the community.  There are no other community services.

In hospital, the medication side of things is relatively straightforward in this resource-poor country.  They have one strength of injectable morphine available – 10mg/1ml – so all prescriptions are written as number of vials rather than dose in milligrams.  They do not have access to transdermal preparations, syringe drivers or sublingual preparations.  When someone becomes to weak to swallow, they will crush sevredol tablets and give them with some fluid.  It is usually very quick from the time that a person becomes this weak and the time that they die – probably as a consequence of dehydration, debility and the extreme heat – but this means that there are rarely any problems with terminal respiratory secretions.  There are different problems with those who are wealthy, who often receive hydration and chemotherapy until death, and arguably have increased suffering as a consequence.

The £1800 I raised will pay for around three weeks of basic medications here – this is the priority.  The aim of the team is to have a totally Cambodian clinical team providing the service – they are well on the way, with Leng, a newly qualified doctor, having just joined the team along with two Cambodian nurses.  There is no formal palliative care content on the medical curriculum, so Leng was taught “on the job” using the World Palliative Care Associations palliative medicine textbook.  After three months of this she was able to consult independently.

We see a man in his forties whose bed is surrounded by family.  A half-full bowl of soup sits on an upturned bucket beside him.  He is hiccupping, his abdomen distended.  He lifts his shirt to show me his surgical scar.  He had a pelvic tumour, diagnosed when he came to the hospital in severe pain.  He also has multiple vertebral metastases, lymphedema in his legs and worrying signs of spinal cord compression.  There is little  radiotherapy that is given with an explicitly palliative intent – although the majority of patients are palliative at diagnosis.  A conservative estimate is 60%, although in reality one doctor told me that her colleague had only ever had two patients who he considered to be in remission.

In the afternoon, we set off in the DSF car to visit a patient at home – Faustine, on the left, is a French palliative care doctor.  Neath is a Khmer translator and Lida is a nurse.

Driving is .. erm …interesting here…Faustine tells me that the team decided against using mopeds for visits despite their affordability – because of the significant dangers posed by the busy streets and lack of traffic rules.

We arrive eventually at a village nestled between the Mekong and the Tonlesap rivers.  The house is hard to find, mainly because it has no address.  We telephone her daughter when we are nearby and she comes to meet us on a scooter to guide us to the home.  It is a two-floor wooden construction, open to the air.  The family are outside on a wooden platform; one grandchild sleeps on the platform, a toddler rests in a hammock suspended from the ceiling.

The patient, a woman in her fifties, has been referred by “word of mouth” to the team.  Diagnosed two years ago with uterine cancer, she now has metastases to her clavicle and significant problems with pain.  As with many patients, she stopped chemotherapy because the family could no longer afford it and was discharged from oncology services.  Currently, a minority of patients are referred in this way, but Faustine is hopeful that this can increase as it provides another means of picking up patients in need who may not attend hospital or be lost to follow up.  She has a large swelling on her clavicle – a metastasis from a uterine primary cancer.  It is affecting her voice and her breathing, and she has developed numbness in her right arm.  There is no option for palliative radiotherapy.   She says she feels breathless all of the time.  Sometimes the swelling obstructs her swallowing as well.  Faustine explains that she can use the sevredol for her breathlessness as well.   She is tachycardic and tachypnoeic.

The team carry a bag of medications.  Supplies are scarce and sometimes decisions need to be made based more on practicalities and cost than clinical evidence.  For example, I am told about a patient with cranial metastases who needed to take twelve prednisolone tablets because that was the cheapest way to provide the therapeutic dose of corticosteroid.  Medications are purchased from overseas as this is around ten times cheaper than buying from local pharmacists.  There are also significant problems in regulation and quality of local drugs, and particular concerns about opioids.

Faustine is hopeful that next year DSF will be able to access transdermal preparations of opioids – they see patients around once a week and it is very rare for them to be managed with subcutaneous medications.  On her wish list is the availability of affordable sublingual preparations – at present they crush sevredol.  Diazepam is the only anxiolytic used, and only orally.  The rectal route is rarely used due to cultural barriers.  They do not use midazlolam although they have it in the emergency box.  There would be little purpose in administering it in the community on account of its’ rapid half-life.

When the visit is finished, her family thank the team and we are all given a bottle of water.  She is smiling.  As we leave, four children are playing in the mud by the river.  They shout “hello! hello!” loudly as we pass, and jump up and down, grinning.  The patient and her family are waving goodbye, smiling broadly.  They are so grateful for the visit, and for the advice – there was no complex palliative care here, but potentially an enormous difference made by a single intervention.

We bump and shake our way back to the office, and I leave to find a cafe to write my blog and digest some of what I have observed today.   I am conscious that today has sparked in me an understanding of global palliative care that I had never grasped before, other than by proxy through marking assignments by staff at Nairobi Hospice.  Here, all “care” is provided by the family and what is lacking is the technology and pharmacological interventions to manage even fairly simple pain.  Yet nobody dies alone.  And across the pond in the United States, the situation is in some ways the reverse.  The priorities there in palliative care are to tackle social isolation and psychological distress, whilst infusions of expensive opioids are titrated milligram by milligram to achieve optimal comfort.  I am too energised to sleep.  I’m off to walk the crazy streets of Phnom Penh.

Read more about the work of DSF in a recent e-hospice article by Axelle Coumert, Head of Project

No One Dies Alone

“You call this progress, because you have motor cars and telephones and flying machines and a thousand potions to make you smell better? And people sleeping on the streets?”
― Howard Zinn, Marx in Soho: A Play on History

Approaching the Laguna Honda hospital and “rehabilitation centre” facility in the heart of San Francisco one evening, I transition from the bustle of the municipal bus station to an almost-empty car park.  The only signs of humanity in the vast parking lot are a cluster of people in wheelchairs on the broad bricked path to the entrance lobby.  As I get nearer, I see that one of these people is a bilateral amputee, one leg taken off below the knee and the other above.  He manoeuvres his wheelchair deftly, expertly.  He’s getting used to it, even though the bandages on his stumps suggest this is a recent event.  An elderly woman with wide eyes calls out, holds a craggy finger up to me, mutters something incoherent.  I smile at her and ask if I can help.  “She’s crazy”, says one of the others.  “She just wants you to take her home but she ain’t got no home ‘cept here.”

I hurry onward to the sparkling lobby of the facility, sit and wait to meet Anne Hughes, the Clinical Nurse Specialist on the 60-bedded “palliative care” programme here.  Since the changes to Medicaid have opened up the palliative care available to those with disabilities or low income, the palliative care community here rarely has vacancies, such is the demand.  Unlike many British hospices, the criteria for admission do not specify prognosis – one resident with a disabling neurological condition has lived here for over eight years.  People can be admitted as long as they are deemed to have “skilled nursing needs” – Laguna Honda is not registered to provide hospice services as such.  Around a third of residents have cancer, and the others a combination of neurological conditions and organ failure.  Around a quarter of residents do not speak English, coming from either Chinese or Spanish-speaking communities.  Around a quarter of the beds are made available for people who are “close to death”, meaning that they are thought to be in the last weeks of life.

There is one attending physician, a specialist in palliative medicine, and he is supported by Anne Hughes, an experienced palliative care nurse and a large nursing team trained to provide expertise in end of life care.  Residents are admitted from a range of places but admissions from home or from the “safety net” Zuckerberg Hospital are prioritised as these tend to be those patients who are most in need.  Anne offers outreach support for palliative care needs for the 60-bedded AIDS unit located in another part of the facility, and to any other areas in Laguna requiring palliative care input.

On my way through the unit, a man waves cheerfully at me.  He has an oxygen tank tucked down the side of his lap and a blood pressure cuff protruding from his sleeve.  I introduce myself and he does the same, smiling broadly.  I am struck by the sense of community here – people here are referred to as residents, not patients, and they often eat together or sit together.  For those who have come here from the streets, this place becomes the home they have not had, and they can stay here until they die.  Most residents remain here until they die – again, this differs from many hospices in the UK where admissions tend to be relatively short, and around half of hospice patients are discharged or transferred elsewhere.  Laguna Honda has a “N.O.D.A” policy – “no-one dies alone”.  A network of volunteers are available to sit vigil with any residents who are spending their last hours without family or friends by the bedside.  This is a relatively common event, particularly for residents who have been homeless, have experienced problems with drugs or alcohol, or who have mental health problems – or (as commonly happens) all three.  A framed Zen quote on the wall of the volunteers’ room reads “a life of one day is enough to rejoice”.

Anne speaks often about palliative care for people who are homeless.  She did her doctoral project on nursing and palliative care in the urban poor.  She was curious to know what dignity meant to people with advanced illnesses, and interviewed 31 people living with cancer, AIDS, or both.  Around two thirds of her participants had histories of homelessness or substance abuse, and around 75% were non-white.  Her literature review identified that in 2003, around a quarter of San Francisco’s families were considered to be below the poverty threshold.  There are numerous issues that impact on the quality of palliative care, such as late diagnosis (around a quarter of cancer diagnoses at UCSF are made during a hospital admission, suggesting poor access to screening programmes, high prevalence of lifestyle cancers not screened for such as lung and liver cancer, and presentation through the Emergency Room with acute symptoms).  San Francisco’s neighbourhoods are sharply demarcated, and those districts in which many of the poorest live tend to have greater pressures on services.  Furthermore, a study by Morrison et al in 2000 found that pharmacies in poor urban areas characterised by a high proportion of non-white residents were less likely to stock controlled drugs such as morphine.  An exception to this is the Castro, which features two hospice services – Coming Home and Maitri, that were established during the AIDS epidemic of the 1980s, and which continue to provide support although now predominantly to people with illnesses other than AIDS.

Anne and I talk about vicarious traumatisation and compassion fatigue, and the urgent need to address this in those working with people approaching death.  Many nurses here are from the Philippines, and this has created an informal network of support which is also a valued community of learning and practice.  I reflect on recent changes in the UK that saw some community palliative care teams transitioning to “agile working”, and I wonder what the longer term consequences of this might be in terms of unquantifiable aspects of peer support – sharing a cup of tea after a difficult visit.  In dispersed teams where this visible team dynamic is reduced or absent, the importance of other means of support become particularly valuable – such as the literature produced for staff by the Irish Hospice Foundation.

The staff at Laguna are trying hard to create an environment in which the homeless can have a home, and the suffering can be comforted.  Both the paid and the volunteer workers confront challenges daily and continue to strive towards creating a compassionate community in the face of inequality and injustice.  Many of the volunteers are allied to the Zen Hospice, and as such undergo training and support in how to support a dying person, and how to look after oneself.  Frank Ostaseski, founder of the Zen Hospice, suggests five precepts for cultivating presence at the bedside of the dying:

1. Welcome everything. Push nothing away
2. Bring your whole self to the bedside
3. Don’t wait
4. Find a place of rest in the middle of things
5. Cultivate “don’t know” mind

As I leave Laguna Honda, the sun is setting over the misty skyline of San Francisco.  There are still a cluster of people in wheelchairs.  One man has positioned his chair beside a large, sleek black car with a personalised license plate.  The driver of the car hands him a small package which he swiftly pockets, and wheels himself back to the foyer.  The diverse problems Anne identified do not disappear when a person comes under the care of the services, and the nurses on the unit often struggle with issues such as drug use, particularly on the AIDS unit.  I walk back to the Muni, past the shadowy occupied doorways, the shouting shuffling people huddling their clothes tightly against the evening chill.  I wonder to what extent we can call ourselves a civilised society when even in the last weeks of life there are people with nowhere to call home.  The French have a saying, one of my favourites, of being “bien dans la peau” – it means to be “good in your skin”, or as I see it, comfortable wherever you are.  Palliative care here seems to be about much more than controlling symptoms.  It is viewed as an opportunity and a means of offering dignity and respect to the dying, of preserving and sustaining personhood, and of staying close and doing nothing.

Amidst the wealth

“Of all the forms of inequality, injustice in health care is the most shocking and inhumane.” Martin Luther King Jr

San Francisco is a city of contrasts.  In the misty shadows of the high-rise monoliths of the financial district there is a scattering of human debris, the homeless population of the city.  They are everywhere – south of Market Street are rows of tents and temporary structures.  With estimates ranging from 2-5% of the population, the number of people living on the streets here exceeds that of most cities in the so-called developed world.  Each year, hundreds of people die on the streets of San Francisco.  Life expectancy for the homeless here is between 42 and 52, compared to 78 for the general population.  It has been estimated that around a third of homeless people in the Bay area are over the age of 50.  When medical problems arise, homeless people tend to go to the emergency room at the nearest hospital as many do not have a primary care physician.  Further, these visits are usually followed by a rapid discharge and the majority of follow-up appointments are not attended.

San Francisco is also one of the world’s most expensive cities, although I am told that this is not the sole reason for the scale of the homelessness problem.  It has resulted from a combination of radical health policy changes in the eighties, for example the widespread closure of state-run psychiatric institutions closed down with few plans for integration or ongoing support for the residents.  The temperate climate of the West Coast is another reason for people to move here to live on the streets – although chilly at times, it is generally dry, as attested to be the cardboard dwellings that line many of the streets south of Market.  Many of those living on the streets have mental health and/or addiction problems – both issues which are known to lead to inequalities of access to supportive care.

Medicare hospice benefit is provided for those who have a prognosis of six months or less – but this requires that the person has seen a physician and received such a prognosis, and it is known that many people do not access healthcare at all.  For those without health insurance, dying can be a very different experience.  The Although free services do exist, such as the San Francisco VA Health Care System (which offers a free geriatric clinic for war veterans), the majority of the homeless do not access regular healthcare and there is an unmet need for those who are homeless who are not veterans.  Zen Hospice do not turn away anybody on the basis of limited finances as long as they have space, and care for around 300 patients annually.  However the number of those who are in need to palliative care is far higher.  The legacy of AIDS, although considered to be more of a chronic condition than a terminal illness, remains, concentrated in areas with high rates of homelessness such as the Tenderloin District.

One doctor told me about some time that she had spent volunteering at a Greek refugee camp.  She felt that the homeless of San Francisco are worse off, in many ways, than some of those who she attended to, despite their history of escaping from unspeakably traumatising experiences in their countries of origin.  “At least many refugees are getting input from NGOs and from a range of services – health, advocacy, social care, political support.  Back home in California, in the midst of all this wealth there are so many people dying alone and unsupported.   They are largely rejected from our society that prides itself on democracy, freedom and justice.”  Although Medicaid exists to provide support for those on low incomes and does cover some palliative care interventions, it does not recognise the term “palliative” so the conditions of reimbursement are the same as for other health interventions.  Often, palliative care services require that the patient shares the costs of the intervention, which can be prohibitive.

The hospitals I have visited so far are high-tech sparkling institutions, testament to progress and medical advancement.  In one of the dedicated palliative care “comfort suite” rooms, ceiling-height windows offer a panorama of the cityscape and the large room includes comfortable bedding for family members wishing to remain by the side of their dying loved one.  Those patients receiving palliative care are reviewed regularly by the expanding team – opioids are titrated and rotated, intravenous fentanyl, oral methadone, there are long debates about conversion factors, half-lives and tolerance.  For those patients lucky enough to have health insurance, this setting offers a high level of symptom management and rapid access to a range of professionals, from spiritual care coordinators to social workers.  There are also a range of outpatient clinics and in-home palliative care service providers such as Bridges, provided by UCSF’s palliative care team.

The situation has improved since the United States passed the Affordable Care Act in 2010, but many inequalities in access remain, coupled with a lack of consensus as to what palliative and hospice care mean, and wide variation in the nature of services across settings.  For those people in the Bay area without health insurance, Medicaid has been fundamental in improving access to palliative care for people with recognised disabilities, as Medicare has been for those over the age of 65. The majority of palliative care is delivered in the hospital in-patient setting, where cost benefits can be proven.  As yet there is no coordinated palliative care service provision for people who are homeless, although respite programmes and key worker programmes do exist to support the most frequent Emergency Room attenders.

Last year, the San Francisco Palliative Care Task Force    reported on current service provision in the Bay Area, which appears to reflect wide choice in providers for palliative care across a range of settings.  The variety of providers reflects some lack of clarity in definitions of what constitutes palliative care, and whether for example a person might be able to receive palliative interventions alongside curative treatment if there are significant problems with symptoms or psychosocial concerns.  Medicare and Medicaid do not clarify what is meant by palliative care and so there are frequent disputes about what is covered for older people approaching the end of life.  Care at home is not covered by these schemes, and nursing facilities are expensive, so the vast majority of people dying at home usually rely on informal care.  It seems to be an ill-conceived notion that Medicare and insurance will pay for expensive chemotherapeutic regimens but not for care that enables people to remain at home to die, or to provide access to comfortable and dry surroundings for a homeless person to spend their last days in safety.