New project launched to support terminally ill patients who want to die at home
SINGAPORE – After fighting for her life for three months in a hospital, all Ms Noorhizah Abdul Rahman wanted to do was to go home.
Her body was breaking down and doctors said there was not much more that they could do.
Ms Noorhizah, 48, had been warded for pneumonia but suffered a heart attack in hospital. Brittle bone disease confined her to the bed and she also needed dialysis due to renal failure.
“If you go home, you won’t be able to have dialysis, do you know what that means? Do you still want to go home?” her sister Ms Noorashikin asked her last month.
Ms Noorhizah nodded. By then, she was unable to speak.
The family hired private nurses to provide round-the-clock care as Ms Noorashikin did not have the confidence she could care for her at home.
Ms Noorhizah died five days later on June 13, with her family by her side. Her last wish to die at home was fulfilled because her family could afford to pay for the care and the health machines needed at home.
Latest statistics from the Singapore Demographic Bulletin show that though most Singaporeans have expressed the wish to die at home, many do not.
Only about one in four people who died in the first three months of this year did so at home.
Most of them – 63 per cent – died in hospitals. A 2014 Lien Foundation survey of 1,000 people found that 77 per cent of them preferred to die at home.
And the survey showed 76 per cent of the respondents who wish to die at home said they would still choose to do so even if there is insufficient support from family, friends or medical professionals.
To help more people fulfil the last wish of dying at home, social enterprise Jaga-Me recently started Project Going Home that offers free nursing services to financially needy patients who have been given a terminal discharge, meaning that the prognosis given is less than 72 hours of life.
Dr Chong Poh Heng, medical director of dialysis, the largest provider of home hospice care in Singapore, said: “The greatest barrier that prevents people from dying at home now is the social support that caregivers need. Caregivers are generally not equipped, mentally or technically, to care for them at home. They lack the confidence or assurance to do so.”
“The rise of nuclear families and ‘sandwiched’ families – those busy caring for both the young and old at home – also means that there is not enough people to render home care,” added Dr Chong.
Those who can afford it either hire a maid and send the domestic worker for caregiver or palliative care training, or pay for private nurses to come by.
Private agencies usually charge $20 to $30 an hour for nursing care but charities offer government subsidised rates of up to 80 per cent for patients, depending on their income levels.
Jaga-Me charges $550 a day for 24-hour care. The social enterprise, which connects on-demand private nursing services to families who need them via a mobile app, has done more than 10,000 hours of patient care in the past year.
HCA Hospice Care gets about 3,500 new patients a year and on average, its doctors and nurses visit patients at home for assessment and diagnosis over a period of three months before they die.
While its services are free for all, there is often a need for other nurses, such as those provided by Jaga-Me, to come in to execute the care plan as specified by HCA nurses.
This includes administering pain medication, and performing other routine care.
Mr Julian Koo, 30, co-founder of Jaga-Me, said he started Project Going Home partly because of his personal experience.
“My grandpa wanted to pass on at home and I saw how how meaningful such home care was for my grandpa. Professional support from nurses at home is key, but rising manpower costs makes it prohibitive for many lower or middle income families to afford it in order to honour their wishes of returning home,” said Mr Koo.
Ms Noorashikin, a lecturer, paid $2,750 to hire the private nurses over five days and $500 for the oxygenator machine.
“I initially applied for the Health Ministry’s Interim Caregiver Service which offered subsidised rates, but I was told it was oversubscribed and they said the earliest the nurse could come was one week later,” said Ms Noorashikin.
Seeing the need for such services, Mr Koo raised about $10,000 from crowdfunding and $10,000 from telco firm Singtel. The money will be used to fund nursing care services for some 20 patients this year. He hopes to raise more money to expand this project further.
HCA Hospice Care provided expertise by giving palliative care training to nurses provided by Jaga-Me.
Said Dr Chong: “Cost should not be a consideration, regardless of whether the family has the means, during this difficult time. More resources need to be directed towards making such services available to the wider population.”
Said Ms Noorashikin: “Being able to have my sister at home for those last five days gave her death dignity and some form of closure to the family.”
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