Talking about death: Sign this form to have the final say

Mr John Tay discussing his end-of-life care with his younger daughter, Ms Maggie Tay. Mr Tay had taken part in advance care planning (ACP), a process in which he decided on his end-of-life care and had these wishes written down. In ACP, his preferences will be recorded and used to guide the medical team and his loved ones in making health-care decisions on his behalf if he is unable to do so.
PHOTO: Talking about death: Sign this form to have the final say

SINGAPORE - When Mr John Tay's 90-year-old mother could not be woken up from her sleep to take part in a family barbecue event in 2011, the family whisked her off to Tan Tock Seng Hospital (TTSH).

She fell into a coma afterwards and doctors said she had little chance of recovery and would be bedridden.

Mr Tay and his family already knew what to do - stop all life-sustaining treatment and focus on making her last days comfortable. After all, it was what she had wanted.

Three years earlier, she had taken part in advance care planning (ACP), a process in which she decided on her end-of-life care and had these wishes written down.

In the two-page document, Madam Yap, who suffered from congestive heart failure, type 2 diabetes, hypertension and renal impairment, had chosen her only son, Mr Tay, a cab driver who is now 63, as her substitute decision-maker.

She has five other daughters. Madam Yap had not wanted to have her life prolonged if she was in a vegetative state, so her doctor did not put her on intubation and ventilator support.

To fulfil her wish to die at home, she was discharged from TTSH and managed to spend her last three days at home with family members by her side, although she was unconscious throughout.

Said Mr Tay: "She had a meaningful death as we had strictly followed her wishes. Once, I even told her that she could just sit back and enjoy life as everything had already been planned for."

That experience prompted Mr Tay to firm up his own ACP, with the help of facilitators at TTSH, in January last year, nominating one of his two daughters to be his substitute decision-maker.

Mr Tay has several medical conditions, including type 2 diabetes and glaucoma. He has also encouraged his sisters to do likewise. One sister and her husband have taken his advice, while two other sisters and a brother-in-law will be getting their plans done soon.

Facilitators on the rise

More people, such as Mr Tay and his family, are being guided through ACP by health-care professionals who, in recent years, are increasingly being trained to act as facilitators.

Dr Irwin Chung, director of the care integration division of the Agency for Integrated Care (AIC), said more than 1,000 health-care professionals, comprising mostly doctors, nurses and medical social workers, have undergone training in this area.

They are taught to broach the topic with patients and their families, assess patients' decision-making abilities and help them outline their treatment preferences in standardised forms from AIC, which oversees the long-term care sector.

These preferences include whether they would like to proceed with cardiopulmonary resuscitation if they should go into cardiac arrest, the extent of medical intervention to prolong their lives and, in the event of deterioration, their preferred places to receive medical treatment and die.

More avenues now open

Two weeks ago, Health Minister Gan Kim Yong announced several key changes to the palliative-care sector at the sixth Palliative Care Conference at Singapore Polytechnic.

Among them was that two regional health-care groups, led by TTSH and Khoo Teck Puat Hospital (KTPH), will train staff at 14 nursing homes in ACP, geriatric care and end-of-life care.

This is a step up from the days when ACP was offered as pilot projects at public hospitals.

TTSH was the first to run such a project in 2010. A year earlier, it had invited members of a United States ACP organisation called Respecting Choices to train its staff as facilitators. The practice of ACP is now in full swing in many medical institutions here.

Six public hospitals and one private hospital now routinely offer ACP to selected groups of patients, such as those suffering from heart or kidney failure. Raffles Cancer Centre at Raffles Hospital offers ACP to patients suffering from advanced stages of cancer. Both national heart centres also now offer ACP to inpatients.

Last September, Singapore General Hospital rolled out ACP to more than 33 departments, such as psychiatry, geriatric medicine, haematology, infectious diseases and family medicine.

The hospital started offering ACP in October 2012 only to patients being cared for by the departments of renal medicine and respiratory and critical care. With the change, about 70 patients have had their wishes formally documented.

At KTPH, an ACP clinic which was set up last October in the geriatric clinic has helped 50 patients decide on end-of-life care. In all, 312 patients have completed ACP since the hospital expanded it from patients in the palliative-care service to frail and elderly patients who are frequently admitted to hospital.

It also extended it to those with multiple medical conditions and those suffering from dementia, kidney disease or diabetes, said Dr Siew Chee Weng, locum principal resident physician at KTPH's department of geriatric medicine.

The list continues to grow.

From Monday, Changi General Hospital will begin a pilot programme for patients suffering from advanced chronic obstructive pulmonary disease.

Talking about death

The planning process can be time-consuming, said KTPH's nurse clinician Sim Lai Kiow.

These conversations on end-of-life care usually take hours and, sometimes, require several sessions before decisions are penned down.

Even then, these wishes can be altered at any time, such as when a patient's medical condition or life circumstances change. Checks showed that at least five hospices here conduct ACP routinely with all their patients.

This is not a surprise, as day- and home-care patients handled by hospices have a prognosis of a year or less, while inpatients are not expected to live beyond three months. Such conversations have always been "part and parcel of hospice work", said Dr Tan Yew Seng, medical director of Assisi Hospice, although there was less focus on documenting preferred care plans previously when there were no standardised forms.

However, he stressed that filling up forms is less important than what transpires during these conversations with the patient, their loved ones and the health-care team.

Sometimes, patients think they should die in hospital so that they do not burden their families. It is only through speaking about this that they learn that their families do not feel this way at all.

ACP facilitators whom MYB spoke to said there are still patients who resist ACP because they are superstitious or see it as a sign that they are giving up on themselves or their loved ones.

"People should know that they are planning for a situation which may or may not happen," said Dr Tan. "If it doesn't, then we simply do not have to make use of these plans."

Five steps of advance care planning

In advance care planning (ACP), your preferences will be recorded and used to guide the medical team and your loved ones in making health-care decisions on your behalf if you are unable to do so.

There are five steps in this process:

  • Talk to your health-care provider or make an appointment with a certified ACP facilitator.
  • Discuss what living well means to you in open conversations with your loved ones and the ACP facilitator.
  • Choose up to two substitute decision-makers to be your voice should you be unable to speak for yourself.
  • Document your preferences with the help of your ACP facilitator.
  • Review your ACP document when your medical condition or life circumstances change.

Source: Agency for Integrated Care

joanchew@sph.com.sg


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