Dying at home is what many want, but few do

A Jaga-Me home care nurse assisting a patient in Bukit Panjang. The social enterprise charges $550 a day for 24-hour care, but recently started Project Going Home to offer free nursing services to financially needy patients who have been given a term
A Jaga-Me home care nurse assisting a patient in Bukit Panjang. The social enterprise charges $550 a day for 24-hour care, but recently started Project Going Home to offer free nursing services to financially needy patients who have been given a terminal discharge, which means that the prognosis given is less than 72 hours of life.PHOTO: JAGA-ME

Lack of caregiver support, cost of home care may prevent the terminally ill from doing so

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 that they could do. Ms Noorhizah, 48, had been warded for pneumonia but later suffered a heart attack there. Brittle bone disease confined her to the bed, yet 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 Noorashikin asked her. Ms Noorhizah nodded, as by then she was unable to speak.

So the family hired private nurses to provide round-the-clock care as Ms Noorashikin did not have the confidence to care for her at home.

Ms Noorhizah died at home five days later on June 13, with her family by her side. Her last wish 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 many Singaporeans do not die at home, though most wish to. 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.

MEANINGFUL CARE

My grandpa wanted to pass on at home and I saw how meaningful such home care was for my grandpa. Professional support from nurses at home is key, but rising manpower costs make it prohibitive for many lower- or middle-income families to afford it in order to honour their wishes of returning home.

MR JULIAN KOO, 30, co-founder of Jaga-Me, said he started Project Going Home partly because of his personal experience.

A 2014 Lien Foundation survey of 1,000 people found that 77 per cent of them preferred to die at home - of which 76 per cent said they would still choose to do so even if there was insufficient support from family, friends or medical professionals.

To help people fulfil their wishes of dying at home, social enterprise Jaga-Me recently started Project Going Home to offer free nursing services to financially needy patients who are on a terminal discharge, which means that the prognosis given is less than 72 hours of life.

Dr Chong Poh Heng, medical director of HCA Hospice Care, the largest home hospice care provider here, said the greatest barrier preventing people from dying at home is the lack of support for caregivers.

He said: "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 and 'sandwiched' families - those busy caring for both the young and old at home - also means there is not enough people to render home care."

Those who can afford it either hire a maid and send her 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.

Jaga-Me charges $550 a day for 24-hour care. It provides on-demand private nursing services via an app, clocking more than 10,000 hours of 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. Its services are free for all.

Yet there is often a need for other nurses, such as those provided by Jaga-Me, to execute the care plan specified by HCA nurses, such as administering the pain medication, and other routine care.

Jaga-Me co-founder Julian Koo started Project Going Home partly due to his personal experience.

"My grandpa wanted to pass on at home and I saw how meaningful such home care was for my grandpa. Professional support from nurses at home is key, but rising manpower costs make it prohibitive for many lower- or middle-income families to afford it in order to honour their wishes of returning home," said Mr Koo, 30.

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 Singtel. The money will be used to fund nursing care services for about 20 patients this year. He hopes to raise more to expand the project.

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."

A version of this article appeared in the print edition of The Sunday Times on July 09, 2017, with the headline 'Dying at home is what many want, but few do'. Print Edition | Subscribe