No support, so no dialysis

Some kidney patients refuse treatment and choose to die

By Salma Khalik and Lee Jian Xuan, The Straits Times, 24 Feb 2014

EVERY year, some people choose death over dialysis when their kidneys fail.

Without dialysis to clear toxins in their body, they are unlikely to survive long.

But there are others who are forced to forgo dialysis because they cannot afford it, or because their families said no.

At the Khoo Teck Puat Hospital (KTPH), 24 patients suitable for dialysis declined the procedure in 2011.

Instead, they were placed under palliative care to ease their suffering as they died.

Out of this group, 10 turned down dialysis because they did not have anyone to take them for the treatment or help them with home dialysis.

Two among them wanted the treatment, but their families refused.

Another four turned down the procedure because they did not want to be a burden to their families as they were "old already".

Six rejected dialysis because it was too expensive.

The rest of the KTPH patients declined for various personal reasons, including fear of pain.

In Singapore, dialysis centres are run either by for-profit private companies, where it costs $2,500 to more than $4,000 a month, or by voluntary welfare organisations which charge highly subsidised rates.

But patients have to be means-tested to qualify for the subsidy.

Medical insurance coverage ranges from a third to full reimbursement.

Professor A. Vathsala, head of nephrology at the National University Hospital (NUH), said patients who do not undergo dialysis have a median survival of six months.

These findings appeared in the December edition of the Annals, a publication of the Academy of Medicine.

The median age of the 24 patients was 71, with the youngest at 45 years old.

A check by The Straits Times found that most hospitals, including KTPH where the study was done, do not keep track of the number of patients who decline dialysis, although all the hospitals say they do have such cases.

At Singapore General Hospital (SGH), which treats about 400 end-stage kidney patients a year, about 30 patients a year choose not to do dialysis, though some change their minds later when they start feeling unwell, said Associate Professor Lina Choong, a senior renal consultant.

Prof Vathsala said that about two NUH patients a year would reject dialysis "for their own reasons rather than due to issues such as family support or lack of funding for transport to dialysis centres".

She said that the low numbers are the result of painstaking counselling when patients initially refuse.

"All patients who refuse treatment are referred to a medical social worker to ensure that they have no financial reasons to reject the treatment.

"For patients who lack family support, we apply for residential homes for the patients. Further, the decision for a patient not to be dialysed is reviewed at every opportunity as an inpatient or outpatient, so as to give the patient every opportunity to change his mind about refusing treatment."

Dr Laurence Tan, a geriatric doctor at KTPH, and his team who did the study concluded: "More must be done to improve social structures which help support patients and their families who desire treatment, particularly if it is a means of prolonging life meaningfully at this stage."

Mr Gan Ah Soy, 68, had turned down dialysis when his kidney failed because "it's very troublesome, you have to waste so much time and money".

But he listened to friends who told him that dialysis would let him live 20 to 30 years more. Now, he helps persuade other patients at SGH who decline the treatment.

Recently, he talked to a 77-year-old patient who has five children and 10 grandchildren.

But the man was adamant about not wanting to spend the money on dialysis or trouble his family.

He told Mr Gan: "I'm 77, I'm old, I've lived enough."

High kidney failure rate
By Salma Khalik, The Straits Times, 24 Feb 2014

SINGAPORE has the fifth highest rate of kidney failure in the world, with 279 people per million of population facing this life-threatening situation in 2012.

The top four, according to the United States Renal Data System, are Mexico (527), the United States (362), Taiwan (361) and Japan (295).

However, the seemingly high figure may not be cause to press the panic button.

Dr Terence Kee, director of the renal transplant programme at the Singapore General Hospital, cautioned that the ranking depends on the accuracy of the territories' reporting systems. Some might under-report, he said.

Patients with kidney failure require either a transplant or dialysis for the rest of their lives. At the end of 2012, there were 5,237 people here on dialysis.

In terms of transplants, Singapore does not make it to the list of top 30 places with the most transplants per million population, which include Hong Kong, Malaysia and the Philippines.

In 2012, a total of 51 people received a kidney transplant, of whom 28 received one from a living relative. The remainder received their kidney from a dead donor.

Last year, 68 people received a transplant - 34 each from living and dead donors. By the end of last year, there were 424 people waiting for a transplant.

Uncontrolled diabetes is the main cause of kidney failure in Singapore, accounting for three in five cases.

Other causes include glomerulonephritis - a group of kidney diseases that cause inflammation and damage to the kidneys - as well as diseases that affect the body's immune system, such as lupus.

Time for awareness campaign on kidney failure*

AFTER reading the reports ("No support, so no dialysis", Monday; and "Lofty sentiments are fine, but they won't save lives", last Friday), I would like to relate my own experience.

My nephew, who is in his early 40s, has kidney failure (both kidneys) and goes for dialysis every other day, with each session lasting four to five hours. After each session, I can see how exhausted he is.

It is the same with my colleague, a woman in her early 30s.

Both of them have family commitments and need to work to support their families.

Many people think kidney failure occurs only in the later stages of life. This is not true; there are many who suffer while in the prime of their lives.

If there is no living donor with a compatible kidney from his immediate family, a patient may have to wait for about seven to eight years for a cadaveric transplant - if he is lucky. Some do not make it past three to four years.

During the waiting period, the patient has to tolerate the pain and the drain on both his money and time.

Currently, there is no public awareness campaign on kidney failure and organ donation. I hope the relevant authorities can showcase the suffering a kidney failure patient has to go through, and appeal to the public to come forward to help.

Singapore has the fifth-highest rate of kidney failure in the world: There were 5,237 people here on dialysis at the end of 2012 ("High kidney failure rate"; Monday).

Each person has two kidneys but can survive on one. I appeal to all readers to consider donating a kidney to kidney failure patients.

Richard Chin Koon Fong

ST Forum, 26 Feb 2014

* Reducing kidney failure cases: MOH replies

LIKE Mr Richard Chin Koon Fong ("Time for awareness campaign on kidney failure"; Feb 26), we empathise with the plight of patients with kidney failure and their family members.

We agree that greater effort can be made to raise public awareness of end-stage renal diseases, and are heartened that voluntary welfare organisations, such as the National Kidney Foundation, have been engaging the public actively through preventive health programmes.

Diabetes mellitus and hypertension are the leading preventable causes of end-stage renal diseases in Singapore.

As such, the prevention, early detection and good management of these conditions are important to reduce the prevalence of kidney failure.

The Health Promotion Board (HPB) encourages people to live healthier lifestyles through regular physical activities, a balanced diet and staying smoke-free, which reduce the risk factors for diabetes and hypertension.

For adults aged 40 and older, screenings for diabetes and hypertension are available under the HPB's Integrated Screening Programme at participating general practitioner clinics. The recommended tests are free, and the GP consultation is subsidised for up to two visits a year, for Singaporeans who are on the Community Health Assist Scheme.

The HPB also has a Nurse Educator Programme, a chronic disease management programme that targets individuals with high blood pressure, high cholesterol and diabetes, to equip them with the necessary skills to better manage their conditions, so as to delay or prevent the onset of complications such as end-stage renal diseases.

Disease management programmes are also available at our health-care institutions.

For example, under the Nephrology Evaluation, Management and Optimisation programme, developed by the National University Hospital and National Healthcare Group Polyclinics (NHGP), available at all NHGP polyclinics, early screening and initiation of kidney-protective medication slowed down the progression of kidney damage in suitable diabetic patients.

The Ministry of Health has initiated the Live On campaign (www.liveon.sg) since 2008 to raise public awareness of organ transplants.

Live On is a social awareness movement that presents organ donation as an act that embraces potential donors, recipients and their respective families.

For donors, it is an expression of the renewed life that a donor can bestow on someone else. For the recipients, it is the expression of hope fulfilled, and for the families of deceased donors, the possible comfort in their loss.

We will continue efforts in raising public awareness related to dialysis and organ donation.

Bey Mui Leng (Ms)

Director

Corporate Communications

Ministry of Health

ST Forum, 6 Mar 2014

More living kidney donations needed

KIDNEY donor Dimitri Linde's article ("Lofty sentiments are fine, but they won't save lives"; last Friday) highlighting efforts to address the shortage of kidney donors in the United States echoes similar concerns the world over, including in Singapore.

This is a pressing issue given the rise in our nation's kidney failure cases, with four people losing the use of their kidneys every day.

Since the early 1970s, Singapore has been promoting kidney transplantation. The National Kidney Foundation (NKF) strongly supports this cause as it provides kidney failure patients with a much better clinical outcome than other treatment options such as dialysis.

There is still some way to go. In 2012, there were 457 people on the waiting list for a kidney transplant but only 23 cadaveric and 28 live donor kidney transplants were carried out. Many patients have waited beyond the average waiting time of nine years.

Progress has been made in developing the deceased donation programme under the Human Organ Transplant Act (HOTA) of 1987. However, deceased donations alone will not have a significant impact on the long waiting list for an organ. For this, we need more living donations by family members and relatives of patients.

In 2004, one of the amendments to HOTA included regulating living donor organ transplantation beyond cadaveric donation.

With further amendments to Hota, the NKF launched the Kidney Live Donor Support Programme in 2009, where financial assistance is provided to a needy live donor who, through his act of compassion, gives someone a new lease of life. In this way, the patient can receive the gift of life and have the assurance that costs will not be a barrier for the donor's long-term medical follow-up.

The decision to donate an organ is not an easy one to make but it is definitely a kind and gracious act. We hope more people will come forward to help their loved ones suffering from kidney failure.

While the NKF continues to serve our country's poor and marginalised kidney failure patients and encourage kidney donation, there is some good news - the main causes of kidney failure, such as diabetes and hypertension, are preventable.

In this regard, the NKF will be doing more upstream to raise awareness of kidney disease and prevention in the community.

We will work in tandem with health-care and other partners to inspire many more Singaporeans to take charge of their health through simple efforts like having a healthy diet of less sugar and less salt, and a more active lifestyle, with a good dose of exercise and regular health checks to keep diseases at bay.

Edmund Kwok
Chief Executive Officer
National Kidney Foundation
ST Forum, 25 Feb 2014

Lofty sentiments are fine, but they won't save lives
By Dimitri Linde, Published The Straits Times, 21 Feb 2014

ON DEC 19 last year, I was admitted for surgery at the Brigham and Women's Hospital in Boston at 6.30am. I swopped my street clothes for a hospital gown, and an hour later I was sucking down oxygen from a mask that drowsed me as no breath of air ever has. By the time I came to at 5pm, my right kidney was halfway across the country, being implanted in a middle-aged woman an algorithm selected for me.

There are more than 77,000 Americans currently on waiting lists for a kidney and, unlike the woman that got mine, many won't get one. In 2012, fewer than 17,000 of those waitlisted received a transplant, and 4,903 would-be recipients died while waiting.

Life on the waiting list is grim. Transplant candidates typically undergo dialysis three times a week, lasting four to five hours each. The sessions weaken patients to the degree that 71 per cent discontinue work after starting. Treatments dispirit them too: Those on dialysis experience clinical depression at a rate that is four times the national average. Absent finding a living donor, individuals on the list can expect a three- to five-year wait for a cadaver match. Nearly half die three years after starting dialysis.

Two policies would address the shortfall of kidneys in the United States: instituting a priority-scoring system for donors and their kin, and paying donors.

Israel pioneered the former in 2012. Prioritising organ allocation by donor status - a system that economist Alex Tabarrok termed "no give, no take" - incentivised people to register as organ donors.

It also removed a hurdle to living donation: The incentive to abstain because of a hypothetical (what if my son needs a kidney?) went away since the policy guarantees that a donor's kin will be prioritised in the event that they need a transplant. The results? Both living and deceased donations have gone up, and the number of people who have died on the waitlist fell by 30 per cent between 2010 and 2013.

To obviate the kidney shortage, we should heed the recommendation of Nobel Prize-winning economist Gary Becker and others by making it legal to compensate donors. Now, the National Organ Transplant Act bans the "sale" of any human organs in the US. Those who oppose compensation object to its ramifications for donors and society. They argue that the poor will be exploited, and that people should give out of the goodness of their hearts.

But these lofty sentiments ignore the fact that 18 transplant candidates die each day. As the legal scholar Richard Epstein has put it: "Only a bioethicist could prefer a world in which we have 1,000 altruists per annum and over 6,500 excess deaths over one in which we have no altruists and no excess deaths."

Yet absent such policy changes, which have little traction in Washington, right now transplant chains are the best tool to facilitate donations. Chains begin with a would-be recipient identifying a donor - say, a man with polycystic kidney disease and his wife. In most cases, a potential donor doesn't have a compatible blood and tissue type with the intended recipient, so this spousal pair would likely be a poor match. (Incompatibility can marginalise the life span of the transplant, or preclude the body from accepting it at all.)

That's where organisations like the National Kidney Registry, a non-profit computerised matching service, come in. The NKR and similar non-profit groups work with hospitals across the US to create large national exchanges, linking incompatible and poorly compatible pairs to highly compatible counterparts elsewhere. Additionally, by working with living donors, these matching services furnish kidneys that endure, on average, twice as long as equally compatible cadaver transplants.

Through groups like NKR, altruistic donors - people willing to donate to an anonymous person - initiate "donor chains", catalysing multiple donations. Inspired by reading about a 60-person chain begun by such a donor, I entrusted the NKR to select my recipient. Their software churned up a highly compatible match for me more than 1,600km away. Concurrent with receiving a kidney, my recipient's incompatible donor gave to a commensurately strong match. A courier delivered this donor's organ to a third hospital in yet another region of the country, completing the exchanges. (The average NKR chain yields six transplants.)

I donated with some hesitation. The laparoscopic surgery to remove a kidney, though far less invasive than conventional surgery, still carries a mortality risk of 0.03 per cent (that's three deaths for every 10,000 procedures). But accepting a small potential for harm in the service of doing good is hardly unique: More than 1.4 million Americans do so every day in the military, a choice that also saves lives.

Donors can give safely into their 70s, but at 25 years old and healthy, with no dependants to support, I had an ideal profile. There was also no financial burden on me: Donors are not liable for any costs. The recipient's health insurance incurs the expense of the donor's pre-op, surgery and post-op recovery, as well as any unanticipated complications in the following year.

Living with one kidney, donors are advised against consuming gym supplements and the class of pharmaceuticals that includes ibuprofen. Otherwise, there are no permanent dietary or lifestyle prohibitions. My remaining kidney will grow to provide 80 per cent of the renal function realised with two. In the long term, donors don't face a heightened risk of developing kidney disease. If they later require a transplant - because of bruising, cancer or disease that would have shut down both kidneys - donors receive priority on the waiting list.

So how did I fare? By 9.30 on the morning after my surgery, I'd taken a lap around the hospital floor, a bit ornery with my nurse for not escorting me sooner. Twenty-four hours later, another nurse detached the IVs from my arms and processed my hospital dismissal. By Christmas Day, I was standing upright, walking briskly for as long as I cared to, no longer sore. I lost a few days of vacation and took a rain check on a trip to Tortola that I couldn't afford. Meanwhile, I enabled two people to receive lifesaving transplants.

Could this be you?

THE WALL STREET JOURNAL ASIA

The writer lives in Cambridge, Massachusetts.