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Opinion: "Cancer alone did not kill her"

"My aunt, who died from ovarian cancer, is not just an invisible victim of this pandemic - the true cause of her death goes back to systemic negligence in diagnosis, referral and treatment of reproductive cancers." - Mariyam Leeza

11 January 2021, MVT 09:05
Depicted on the right is Khadheeja Mohamed, who passed away at the age of 47, from ovarian cancer on June 30, 2020. IMAGE/AISHA MANIKE
11 January 2021, MVT 09:05

This account was submitted by the family of Khadheeja Mohamed, who passed away from ovarian cancer on June 30, 2020.

As the pandemic unfolded last year, many countries closed their borders to contain the virus, including neighbouring India and Sri Lanka, where most Maldivians travel each year for medical emergencies. It left several families worrying for their sick relatives who needed treatment from abroad.

After weeks of delay, in the evening of June 29, 2020, an Aasandha flight flew out to India with the first round of patients and their family members, renewing their hope. But for my uncle, Ahmedfulhube, his entire world came crashing down around him on that night. His wife, Khadheeja Mohamed, who was suffering from ovarian cancer and in need of a life-saving surgery from overseas, was not given a seat on this flight. She died the next morning, at the age of only 47.

Six months on, my family is still struggling to move forward from the guilt of not being able to save her life.

Within my extended family, Aunt Khadheeja was one of the closest relatives - a soft-spoken, kind and incredibly generous person. She and her husband lived on Hulhudheli, a small island of fewer than 1,000 inhabitants, in Dhaalu atoll. He went out to sea to catch yellowfin tuna, while she worked from home to support the family, by cooking fish, weaving palm thatch, and making coir-rope.

A month of helplessness

Aunt Khadheeja was admitted at Indira Gandhi Memorial Hospital (IGMH) on May 31, 2020, during the second month of the lockdown.

It came as a huge shock to the family when we heard that she had metastatic ovarian cancer, which meant that the cancer had spread from her ovaries to other parts of the body, threatening her life. She required a radical surgery as soon as possible to remove the tumor and the affected organs and tissues - a serious operation that was not possible in the country.

Worried, we started to look for a way to take her abroad. On June 2, 2020, she was referred to the Amrita Hospital in Cochin, India, and listed to be evacuated on one of the medical flights arranged by Aasandha. Filled with hope, we waited anxiously for the departure date.

By the time the first flight was scheduled - after a month-long delay - her condition had badly deteriorated. She could not eat, breathe or even stand properly. The pain and aches from the cancer completely crippled her. Twice, doctors drained cancer fluids that had built up inside her abdomen to help ease the swelling and pain.

Afraid that any more delays would impact her ability to travel, or worse, she may not survive till the next flight, I called Aasandha to request for her immediate evacuation. On the family's request, even IGMH called. But all our efforts, including posting on social media, failed to help her.

My aunt was heartbroken after learning that she would not be able to travel for the surgery. Feeling hopeless and overcome by the fear of not having much time left to live, she begged her husband to take her back to Hulhudheli to be closer to her children - aged 11 and 28.

She died at around 0400 hrs on June 30, 2020, just hours after the flight’s departure. At the hospital, when her body was wheeled away to the cemetery, I heard my uncle, 57, say:

“I am just an ordinary fisherman. I had done everything I can to help her by bringing her to Malé. If it were in my power, I would have taken her to India too.”

Khadheeja Mohamed, who passed away at the age of 47, from ovarian cancer on June 30, 2020: "...she worked from home to support the family, by cooking fish, weaving palm thatch, and making coir-rope". IMAGE/AISHA MANIKE

“Come after lockdown”

Amid the social media criticism that spread after we shared about her death due to the delay in treatment, Aasandha company’s Managing Director Mariyam Shafeeg said in an interview that my aunt’s case was not received when they finalised the list of patients for the flight on May 29, 2020, with the referrals from IGMH.

We were infuriated to hear this, because at that point, she was stuck in Dhaalu Atoll, unable to come to Male’ because of the travel restrictions. Four days prior, on May 26, 2020, IGMH had rejected her referral from the Kudahuvadhoo Regional Hospital, telling her to come after the lockdown ended.

Since Aasandha policy prevents emergency evacuation from the atolls without IGMH’s approval, Kudahuvadhoo Regional Hospital refused to arrange a sea ambulance transfer, leaving them trapped on the island without access to healthcare.

Later during our meeting with IGMH’s Quality Improvement Division (QID), we found out that the gynecologist who rejected the referral could not even remember the details of her case. We were told that all non-urgent referrals from the atolls were being denied at the time because of the lockdown. This did not make any sense though, as the X-ray and tests done at the Kudahuvadhoo Hospital clearly showed that she had a huge tumor in her ovaries, causing her belly to swell up and giving the appearance of a six-month pregnancy. She was in unbearable pain because of it.

Desperate to save her, Ahmedfulhube walked to the Kudahuvadhoo Council Office and the Police Station. They advised him to get a legal permit from the National Emergency Operation Center (NEOC), which was centrally controlling all the movement across the 1,200 islands.

As no one was able to help him back on the island, he eventually called me and my siblings in Malé. We requested a permit to bring them on a cargo ferry that left on May 30, 2020, four nights later. But critical time was already wasted.

Women are dying

During the month Aunt Khadheeja was admitted at IGMH, we also asked the doctors if the surgery could be done here. But they told us it was not possible because the hospital did not have a gynecologic oncologist, a super-specialist trained to diagnose and treat cancers that develop in a woman’s reproductive organs - vulva, vagina, cervix, uterus, fallopian tubes, or the ovaries.

One gynecologist who spoke to the family said that nearly all the women diagnosed for reproductive cancers get referred abroad due to lack of gynecologic oncologists and treatment facilities in the country. In many cases, sadly as it happened with my aunt, the cancer is also diagnosed too late.

“Ovarian cancer is very aggressive. Deaths are sometimes more than diagnosis because they are detected late. But we do not have an onco gynae at IGMH. It is not even included in the training requirement so our doctors can’t specialize in it,” the doctor explained.

WHO statistics show that 16 women were newly diagnosed with ovarian cancer in 2018, while 11 died from it. Breast and cervical uterine cancers together killed 48 women during the same year. But the number of deaths is feared to be even higher, as many cases may go undiagnosed on remote islands with poor healthcare facilities.

“They are just constructing hospital buildings, without improving health services. We need doctors, we need proper diagnosis and treatment facilities,” the gynecologist added.

In my aunt’s case, she was first taken to Hulhudheli’s healthcare centre. The GP sent her back home with painkillers and antacids – misdiagnosing cancer for gas. Two days later, she was taken to the doctor again. This time, she was referred to the gynecologist on Kudahuvadhoo, who found the tumor and referred her for specialist care in Malé.

Khadheeja Mohamed, who passed away at the age of 47, from ovarian cancer on June 30, 2020: "...she worked from home to support the family, by cooking fish, weaving palm thatch, and making coir-rope". IMAGE/AISHA MANIKE

If she had died back on Hulhudheli, we would have never found out about the cancer. In fact, I later heard from my aunt’s daughter that her grandmother died suddenly, a few years ago, after suffering similar abdominal swelling as her mother, indicating a hereditary risk.

But, Aunt Khadheeja also came to Malé in early 2019 to get help for abdominal pain. The internal medicine doctors she consulted diagnosed her for gastritis, without a gynecology referral. Even the psychiatrist who prescribed her antidepressants for depressive disorder that she had developed in part due to the recurring pain, did not advise a thorough physical examination. This suggests the problem of misdiagnosing women with cancer is not only a problem found on far away atolls.

At the QID meeting, the head of the Gynecology department at IGMH met with us after we complained about the referral rejection and the lack of treatment that ended in her death. Dr Mohamed Aseel Jaleel told us good gynecologic oncologists are very difficult to find, as most super-specialists do not want to come to the Maldives because of the low salaries offered here.

So ultimately, the inadequate care for women suffering and dying from reproductive cancers came down to lack of cash. This funding gap, we heard from different sources, also permeates through the public health system, where cancer prevention and screening programmes are reduced to one-off camps and campaigns, often run by under-resourced civil society groups.

Has anything changed?

Investigations relating to this case have been reportedly initiated by the Ministry of Health and the Human Rights Commission of the Maldives (HRCM). Six months have passed since her death, and we are yet to hear from the authorities about their investigations or actions taken in response.

Today, when I look back at the true cause of my aunt’s death, it is clear that she was not only a hidden victim of this pandemic, but systemic cracks in the healthcare system that existed long before the crisis started.

Even in diseases like ovarian cancer, where a delay in treatment can turn fatal, atoll and regional hospitals are not allowed to directly refer patients to IGMH or abroad. A doctor in Malé, who did not even see or touch my aunt, made a decision that cost her the chance to receive early treatment.

IGMH concluded no action will be taken against the doctor who rejected her evacuation, but they would be reviewing the existing patient referral system to make sure the mistake is not repeated. We do not know if any actual changes have been made since our meeting, but we certainly hope so.

Even more disturbing is the fact that women’s lives are being put at risk because reproductive cancer diagnosis and treatment facilities are lacking in the country.

For my aunt’s death to make a difference, these are serious issues that must be addressed now.

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