Palliative care–not just for patients with cancer
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Contributed by RAYMOND ANTHONY FERNANDO –
This letter was first published in TODAY. Tan Tock Seng Hospital has since replied to Mr Fernando here.
Hospital must honour its promise to a grieving caregiver
My wife, who was coping pretty well with schizophrenia for the past 40 years under my care, was admitted to Tan Tock Seng Hospital (TTSH) in mid-April this year after she was diagnosed with pneumonia.
A few weeks before her admission, she was asked to undergo a colonography test as she was experiencing severe constipation problems. The day after the colonography test, big ugly rashes appeared on her shins, stomach, chest and feet. I was very upset with the radiology staff and doctors, who kept apologising. Besides colon problems, my wife had been struggling with advanced arthritis for the past ten years.
My wife died three weeks or so later in hospital after her whole immune system broke down, resulting in her not being able to fight bacteria that invaded her body. She was exposed to a lot of infections during her multiple visits to this hospital. On average, I had to bring her to see the specialists, including the arthritis doctors, between six to eight times a month, and it was exhausting for both of us.
It was a traumatic experience for me during my wife’s one-week stay at the hospital. She was taking 51 tablets a day to manage her six chronic illnesses, half of which was to manage her schizophrenia. When she was under my care, even if one of her psychiatric medications was omitted, her mental state would become shaky, and I could see the warning signs of her schizophrenia coming on fast and furious.
When my wife was admitted to TTSH for pneumonia, the doctors took away all her psychiatric medications as they claimed that they were lowering her blood pressure. I told them that my wife would surely suffer a relapse of her schizophrenia if they take that route, because those medications preserved my wife’s sanity.
Shortly afterwards, as I had expected, my wife suffered a serious relapse of her schizophrenia leading to the loss of her speech. Later, she died. Do you know how it feels like to see your spouse die when she cannot even speak to you in her dying moments? She’s a woman whom I have loved so dearly for 40 years and worked tirelessly to bring her to a full remission of her mental illness! How would anyone feel if it happens to their own loved ones? These are questions which troubled me each time I remember the happy times my wife and I shared together.
Clearly, there is a lack of understanding of mental illness here – even among professionals. There are also poor support systems for caregivers of the mentally ill, and this is why I have frequently raised these matters in the press. In addition, there needs to be better collaboration between the specialists, general practitioners and psychiatrists so that everyone has an in-depth knowledge of mental illness.
I was also very upset that no form of palliative care was given to both my wife and me. In other developed countries, palliative care is given to both the patient and the caregiver. Palliative care should not just be given to patients who are dying of cancer. At my wife‘s dying stage, I was insensitively queried by 6 doctors from the Infection Control Unit as to whether my wife had travelled outside Singapore.
Traumatised by the poor handling of my wife’s care at the hospital and her abrupt passing, I wrote to the TODAY newspaper on 15th September expressing my pain and grief over my wife’s untimely passing. Associate Professor Chin Jing Jih, the acting Chairman of TTSH’s medical board replied to my letter on the same day, explaining that the hospital had tried their best to care for my wife, and apologised for the insensitive behaviour on the part of the six doctors from the Infection Control Unit. He has made a promise to engage me and offer support.
This promise has yet to be fulfilled because no one from TTSH has touched base with me even though I sent a reminder to Associate Professor Chin Jing Jih on 28th September. When promises of support are made, they have to be honoured.
The Government has been giving a lot of support to the Pioneer Generation, yet citizens like me who is six months short of being a pioneer citizen and struggling with insomnia for the past three months have apparently been cleanly forgotten.
By RAYMOND ANTHONY FERNANDO
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