Experts Moot Aged Care Fund, ‘Living Will’ To Ease Caregiving Burden

Galen CEO Azrul Mohd Khalib proposes an aged care fund starting at age 45, while UM geriatrician Prof Dr Tan Maw Pin suggests written advance care directives.

KUALA LUMPUR, March 14 – Health care experts are calling for better policies and planning to support long-term care in Malaysia, especially for elderly people requiring assistance, which can cost families thousands of ringgit in out-of-pocket expenses.

Malaysia is already an ageing nation, with the country expected to become an aged society where 14 per cent of the total population is aged 65 years or older, by 2030.

Galen Centre for Social and Health Policy chief executive Azrul Mohd Khalib said the country needs a number of long term and short term actions to arrest the problem of providing and sustaining aged care.

“For the short term, we need to establish care homes in each state which provide a standard of care, managed by the government, as non-governmental organisations (NGOs) and private companies are extremely limited.

“Long term, to fund this, we should either have everyone contribute to an aged care fund which they begin paying into at 45 years of age, or the state governments should shoulder this responsibility utilising their own monetary resources. It can be done,” Azrul told CodeBlue.

CodeBlue previously detailed a family’s caregiving journey over 4.5 years which amounted to RM900,000, including home care costs and RM12,000 monthly care at a facility.

Ipoh Timor MP Howard Lee Chuan How has also drawn attention to the challenges faced by middle class Malaysians who are responsible for looking after incapacitated family members. He has urged for an increase in the carer’s allowance as an immediate solution for people who suddenly find themselves in the position of needing to provide full-time care.

The Social Welfare Department (JKM) currently provides a carer’s incentive at a monthly maximum rate of RM500. Lee has suggested increasing the amount to at least the minimum wage although he noted that even this would fall short of meeting the needs of caregivers.

In Japan, those over 65 account for 29.1 per cent of the country’s population, making Japan a “super-aged” society and the oldest in the world. The country has a population of over 125 million people, about four times the size of Malaysia’s 32.7 million population.

Japan introduced a long-term care (LTC) insurance programme in 2000 where the source of funding is mixed, with taxes contributing 45 per cent, social contributions making up another 45 per cent and 10 per cent from cost-sharing, according to the OECD.

Social insurance contributions are paid for by people aged 40 years or older, allowing funding from a broad pool. Similar care insurance programmes can be found in Germany, the Netherlands, Luxembourg and South Korea.

In Germany, the contribution rate of the LTC insurance was initially set at 1.7 per cent of gross income, and was increased to 2.55 per cent in 2017, with an additional 0.25 per cent paid by those 23 and over who do not have a child. This increase has mitigated erosion of benefits from price hikes.

“Caregiving is costly. The Asian culture of having families take care of their elderly members, while well meaning and a source of proud traditions, ignores the reality of the burden and cost this places on households, especially those which are more economically vulnerable.

“Malaysia has failed to invest in preparations for an ageing population and the consequences are catching up. Neglect of the elderly is a concern which is conveniently hidden behind Asian values and responsibility,” Azrul said.

“While a minority, some people are even discussing the unthinkable, pulling the plug or euthanasia for their elderly who cannot care for themselves due to the catastrophic financial situation it places on their loved ones caring for them,” he added.

Euthanasia, broadly defined as an act of deliberately ending a person’s life to relieve suffering, is legal in varying degrees in seven countries – Belgium, Canada, Colombia, Luxembourg, Netherlands, New Zealand and Spain – as well as several states in Australia.

Other jurisdictions, including 10 states in the United States, permit assisted suicide in which patients take the lethal drugs themselves, involving prescription by a doctor. The main difference between euthanasia and assisted suicide is who performs the final, fatal act.

In most countries, however, both euthanasia and assisted killing are illegal. According to the NHS, the United Kingdom regards euthanasia as either manslaughter or murder, depending on the circumstances, where the maximum penalty is life imprisonment.

It adds that assisted suicide is illegal under the terms of the Suicide Act (1961) and is punishable by up to 14 years’ imprisonment.

Azrul said euthanasia should not be the way to go if the first concern is managing the costs of care. “That is beyond the pale. We should not need to have a law permitting euthanasia. However, we should immediately decriminalise suicide,” he said.

Azrul said there is a time and place for clinical decisions to be made by medical professionals which are guided by medicine, evidence, data, and the needs of the patient.

“These may seek to either prolong life or end life. That determination should be left to the health care professionals whose first job is to do no harm (primum non nocere) and to consider the needs of the patient,” he added.

Prof Dr Tan Maw Pin, a professor of geriatric medicine at the University of Malaya, said high-cost medical procedures or interventions broadly fall under the term “catastrophic health expenditure” where medical spending of a household exceeds a certain level of capacity to pay.

Dr Tan said as Malaysia becomes an aged nation this sort of high spending is becoming more of a normal occurrence and “a rite of passage before death”.

“We do have to learn from these lessons and society will need to understand, process and spell out where their values lie. In the US, for instance, over 50 per cent of health dollars are now spent on the final year of life.

“I don’t believe anyone will agree this is in any way considered money well spent, let alone accept that being attached to machines and subject to medical treatment with limited ability to extend or enhance life is in any way a good way to die.

“Yet, it is becoming increasingly difficult to decide when not to treat,” Dr Tan said.

She said while medical science is now capable of extending life almost indefinitely, experts still do not have the ability to accurately predict who will benefit from life prolonging treatment.

“Though we do know who is likely to do well and who isn’t, we are unable to say whether the intervention is definitely not going to work. Hence, as many view life as priceless, they may feel it necessary to keep going even when there is a slim chance of recovery.

“Further, decisions are often made based on likelihood of sustaining life rather with limited consideration for the likelihood of the individual recovering functional living, continued contribution to society or obtaining any quality to life,” she said.

Dr Tan said there are other considerations, in terms of poor access to restorative care, and a lack of investment in enablement services after a period of illness, since many will consider it filial piety to do everything for our older parents. “Hence, our culture disables the older person and unnecessarily escalates the cost of care.”

Dr Tan said the solution in many ways is simple and obvious, yet difficult to execute.

“We need to plan and react. It would be preferable if older persons put down in a written advance care directive document or ‘living will’ what they would like to happen to them should they encounter a potentially life-threatening illness.

“There is currently no law in Malaysia which facilitates or enforces living wills. Anyone is, however, entitled to produce a living will and family members and doctors will certainly find it helpful to refer to this document when the time comes,” Dr Tan said.

“React means that any treatment offered such as surgical intervention or life-prolonging treatment needs to not only consider the cost of the procedure alone, but we also need to consider the resources required to provide rehabilitation and care which may be required after the treatment is delivered,” Dr Tan added.

She said it should be considered unethical to offer a treatment if there are inadequate resources to then meet the rehabilitation and care needs of the person afterwards.

“Our health care financing system, private or public, currently in no way meets this ethical requirement. It is now of vital importance when considering health care reforms, to incorporate restorative and enablement services into our health care services.”

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