SINGAPORE – Mr Lim, 42, and his brother have the shared burden of looking after a sister who has been struck by ovarian cancer, as well as a wheelchair-bound elderly mother.
Relying solely on Mr Lim’s income as a machine operator, the family barely gets by after forking out S$1,000 monthly to care for their sister, who stopped work to battle her illness at home. The amount includes medication, food and transport to the hospital for her radiotherapy sessions.
“Eventually, when her condition worsens, as she refuses to go for chemotherapy, the social workers tell me she may have to be put in a nursing home,” said Mr Lim, who declined to give his full name. “We cannot afford, or have the expertise, to take care of her at home anymore then.”
The cost and the “tough work” for caregivers in the case of those who may choose to die at home have put most patients off, although many would like to do so there, said doctors and industry players.
This is not desirable, as “modern hospitals are not hospitable to the dying”, said Mr Lee Poh Wah, Chief Executive Officer of the Lien Foundation, which launched the Respectance Fund in September to offer funding to financially needy patients who wish to die at home.
“They (hospitals) are designed to deliver technical tasks and functions that can drive the dying and their families into a state of deep isolation and disconnectedness,” he said, qualifying that dying at home is not suitable for all, such as those in extreme physical and psychological distress.
According to hospices and medical social workers, there are currently a few obstacles to a more holistic palliative care framework: Insufficient advanced palliative teams in hospitals, the high costs and an incomplete, fragmented funding framework, as well as lack of support for caregivers.
Hospices say that costs of dying at home can be from the hundreds to the thousands, depending on the condition and equipment needed, as well as any extras that patients can afford. Equipment costs can add up, rendering it more expensive than dying in a hospital.
According to the Lien Foundation, renting of basic equipment such as an oxygen concentrators and a hospital bed can range from S$270 to S$600 a month and any specialised equipment would cost far more. Then, there are consumables such as catheters, dressings and diapers, as well as occasional costs such as ambulance fees for hospital visits.
But the biggest cost could be the opportunity costs that caregivers incur, including giving up a job, said Dr R Akilesh, CEO of HCA Hospice Care.
Pointing out the “lack of a formalised effort to defray costs of dying at home”, the Lien Foundation’s Mr Lee felt that current funding schemes are “narrow in focus and very specific”, with each having its own assessment criteria and requiring a long lead time – not ideal for dying patients.
“We need policymakers to review the current support schemes, besides funding, so that those who wish to die at home are not impeded by the lack of knowledge or funds, or obstacles such as caregivers’ deficiencies, need for hospital beds and medical equipment,” he said.
Palliative teams in hospitals are also underdeveloped, said industry players. While there are some developed palliative teams in some institutions here, others are just starting out, said Ms Irene Chan, Executive Director of Assisi Hospice.
“My opinion is that patients and families are not very well informed of options and services available, and they fall through the cracks when doctors or nurses don’t refer them to the palliative teams – which can happen,” she said.
Cost and ‘tough work’ for caregivers put off patients who may choose to do this