Dying from distance – Part 2: At the mercy of an unfaithful system

This is Part II of the story of an ailing man who’s struggling to navigate Thailand’s revered healthcare system — one that fails to care for its neediest patients. Today’s story discusses the larger forces that have impacted his fate.

Read “Part I: One Man’s Looming Fate

Guest contributors Praveena Fernes and Abbey Marino report from Suwannakhuha District in Nong Bua Lamphu Province. Additional contribution from Peera Songkünnatham.

Part II: At the mercy of an unfaithful system 

Leaving Dieow’s body, a milky fluid drips out of the tube into a transparent dialysis bag. Dieow’s 58-year-old mother, Sutta Khammuan, clings to this sack of cloudy liquid that swirls with the advanced stages of her son’s illness.

They are tied to a regimen of daily dialysis and trickling hope.

Dieow has chronic kidney disease (CKD) – an illness that is impacted by detrimental social and environmental contributors – an illness with a cure just outside his reach.

The cause might have been the exposure to poisons when he worked as a chemical sprayer. Maybe it was a rare genetic mutation, or even his diet.

At this point, it does not matter.

Dieow has been forced to entrust himself to this unfaithful system – a system that can’t afford to care for people like him.

Universal coverage scheme

Under Thailand’s Universal Coverage Scheme (UCS), Dieow received treatment and remained in stable condition for six years through home dialysis with his aging mother as his caregiver.

Late last year, complications arose, necessitating a change in the treatment regime from home dialysis to a more specialized procedure at a provincial hospital an hour drive away.

Under UCS, every patient receives free care, assuming their treatment is on the pre-approved list of covered procedures. In 2008, just one year before Dieow was diagnosed with CKD, the boundaries of UCS expanded to cover kidney dialysis therapy.

This scheme claims to cover everyone. Unfortunately, “everyone” often refers to the few who are able to afford the extra costs that accompany long commutes and frequent overnight stays. For these reasons, Dieow and many others have slipped through the cracks of Thailand’s acclaimed universal healthcare system.  

A new building at the hospital

Dieow lives in Suwannakhuha District, Nong Bua Lamphu Province. Looking down the main road, the only businesses are restaurants, and every other one of them is closed. Rural Isaan villages like this almost resemble ghost towns – a faltering agriculture scene and lack of local jobs force many to pursue migrant work elsewhere, leaving children and the elderly behind to hold down the household. Unsurprisingly, the overcrowded hospital may be one of the most bustling places in the community.

But there is no dialysis center here for people like Dieow.

Cash-strapped hospitals have to make tough decisions. Local doctors note that such is the case in Suwannakhuha, where 200 people have been diagnosed with CKD. They also say that only ten percent of these patients are receiving dialysis. Doctors visit these patients regularly, overseeing their home dialysis.

The other 90 percent face barriers to dialysis treatment, instead choosing to take medicine to alleviate their symptoms, without really addressing the failing kidney.

The local hospital is in the midst of constructing a new building. Administrators are dedicating this new wing to treating monks and VIP patients who want to purchase a private room.

This decision reflects the common neglect of chronic diseases, such as cancer and CKD; this building could have been a chemotherapy clinic or a dialysis center.

While this plan will be a financial boon for the hospital, building a dialysis clinic would be a money-sucker. It would require additional trained staff and an expensive water purification system.

Perhaps this new building’s profits could be used to fund those clinics in the future. But Dieow will never see a dialysis center in Suwannakhuha.

A hospital official refers to the fundraising efforts for the monks’ wing, “Really, it’s a way for us to get a free building.”

Mr. Sarayut Somsri is a hospital board member and the director of the Primary Care Unit adjacent to the hospital proper. As someone who has overseen the care of Dieow for the past several years, Mr. Sarayut states that he would like for a dialysis center to be built here one day.

But for now, saving this dying man’s life within the given constraints is not a priority.

Rural access

But hope lies within reach. The hemodialysis center at Udon Thani Hospital can restore Dieow’s health and livelihood for free. Unfortunately, UCS does not cover the transportation or overnight housing necessary for people commuting from far away.

Struggling to make ends meet, Dieow’s mother has no feasible way to pay for his treatment. It would require three trips to the hemodialysis center in Udon Thai each week. Her inconsistent income yields around 2,000 baht per month (about $60 US) from selling melons in front of the house. Her son now needs 24-hour care. Sutta has had to quit her job in order to be a full-time caregiver.

Given his condition, the dozen or so trips needed each month for treatment would require a hired car and driver. But that would cost more than three times what his mother previously made per month. Even the unimaginably exhausting and decidedly unsterile, segmented trips by bus are beyond their means.

His only way to get to the hospital is for him to be a breath away from death – and then it’d be too late.

Of the 20 Isaan provinces, 12 have less than one doctor for every 4,000 people, according to a 2015 government survey. Another source states that there is one doctor for every 850 people in Bangkok, while Thailand’s rural northeast provinces has one doctor for every 5,308 people.

The distribution of healthcare personnel in Thailand is uneven, faring the worst in the Northeastern region. Researchers approximate that Thailand would require 9,000 more doctors to meet the current demand.

One study estimates 4.1 million people in Thailand are classified as “pre-CKD” patients. This number is especially noteworthy when placed beside the currently available 450 nephrologists (doctors specializing in kidney care). This gives a nephrologist-to-patient ratio of 1:15,000 in Thailand. This is not sustainable for successful and appropriate care.

Nong Bua Lamphu Province is considered lucky to have one practicing nephrologist. Other provinces in Isaan have none.

Northeasterners are at a disadvantage. Still, a basic health infrastructure exists: there are doctors, hospitals, and medical equipment. Despite the overcrowded facilities and the overburdened medical staff, the biological reality of disease can, at least on paper, – or at least somewhere in Isaan – be medically addressed.

But there’s a host of other factors at play outside of the medical realm. Patients are at the mercy of dynamic systems pressing down on them. Financial barriers, government-level policy, and living circumstances all culminate to create the perfect conditions that push biological sickness into the realm of the social and political.

Dieow’s body should not be blamed. For the mere price of hemodialysis, his body can be fixed, or at least maintained. It’s everything else that’s going to kill him.

Dokmai Thongma smiles while having many neighbors and a team of doctors over. She discusses her kidney disease journey and shows where her new dialysis room will be located in her home.

The pitfalls of poverty

Not all patients are like Dieow. The privileged have at least some chance to overcome these fated barriers.

Dokmai Thongma is a 69-year-old woman living with kidney disease in the same village as Dieow. When compared with him, her age reflects a more typical time for disease contraction.

Dokmai’s family makes a comfortable income. Four years ago, she was diagnosed with CKD and transferred to a provincial hospital to receive emergency dialysis. She didn’t trust the government doctors or accept the diagnosis.

She left the hospital expecting to return to her regular life. Unaware that kidney disease requires intensive treatment many times a week, her condition worsened.

“The only reason I’m up and well today is because I went to the private clinic,” she relates.

Dokmai was unsatisfied with her care at the district government hospital and says, “They just gave me some pills and sent me home.”

A secure financial status allowed her to seek out a renowned doctor in a private clinic in Sawang Daendin District, Sakon Nakhon Province, a two and a half hours’ drive away from Suwannakhuha.

Staying overnight, Dokmai was finally able to grasp the reality of her condition. It was only in the private clinic that she decided to receive dialysis treatment at home.

Dokmai spent over 33,000 baht (about $950 US) on private care.

After spending all of this money, she is being treated under the same regime as Dieow.

Dr. Potsawat Wetpanich, a doctor at Suwannakhuha District Hospital who counsels and treats many CKD patients, understands the need for worrisome diagnoses to be confirmed by a second opinion, but agonizes when patients search for it and delay critical treatment.

But Dokmai does have one thing that could save Dieow’s life: a means of transportation.

While having a weighted wallet can give people peace of mind, in this case it did nothing but delay Dokmai’s care. Here, she sits with the same doctor who would have treated her had she not spent the money seeking a second opinion.

Acceptance

Buddhism feeds Dieow’s daily practice. Without regret or mournfulness, Dieow has come to peace with his fate. For him, death falls into the cycle of rebirth, samsara. Perhaps this ill fate is part of bigger karmic tale – one that reflects his own past actions and present doings. Accepting his fate comes with a grounded temperament, spreading love and gratitude despite difficult circumstances.

He’s been told chronic kidney disease could end his life any day now.

“I used to ask, ‘Why me? Why now?’” says Dieow, “Now, I know it’s more important to be strong than disease free.”

On several of his own hospital visits, Dieow’s most memorable moments are surprisingly not of his own suffering. He recounts seeing and empathizing with many other patients who fare worse, thinking: they may never leave the walls of this sickly room. With this perspective, Dieow describes his impending death as “normal.”

Belief systems and culture affect how one understands and handles hardship. Dieow’s identity as both Thai and Buddhist encourages acceptance as part of life. For many rural Thai people, this attitude actually mitigates mental strife.

In his humble testimony, Dieow shares that he does not want to be pitied.  

Although Dieow is unable to read more than a page or two at a time, his religious books bring him comfort.

Instead, he would like to be known as a man who enjoys visits from friends and doctors. He appreciates the attentive care he has been given and only regrets that he has become too weak to weave nets or read very much.
Though these hobbies are harder to perform with withering flesh, he smiles a wide grin while sharing his favorite pastimes.

Dieow sits on the front porch of his house, happy to be spending time with visitors.

His days dwindle.

His name translates to ‘alone,’ but his story is quite the contrary. His mother and doctors are faithfully by his side.

While he and his support system can only do so much, larger systems will not do enough.

Economic and social systems have been instrumental in the onset of his disease. Still, the Universal Coverage Scheme will not even cover Dieow’s transportation costs.

His life edges to a close, unseen and unremarked, like the lives of the vast majority of the poor. He is a testament to the many others who have stumbled up against similar barriers that determine their fates.

Dieow, like the many others before him, accepts his looming death.

Thailand’s universal health scheme welcomes Dieow with open, loving arms. Standing ever just beyond his reach, it applauds its hero’s fortitude.


“Part I: Ones Man’s Looming Fate” can be read here.

Praveena Fernes is a public health student at Tulane University in New Orleans, LA. Abbey Marino is a sociology and economics student at the University of Tulsa. They have been studying about development and public health issues in Khon Kaen for the last four months.

Photography by Praveena Fernes