01 Dec 2011
By: NG WAN CHING
For years, he ran a photo studio in Perak, living a simple life with his family.
At 81, Mr Yap Kian Lan was diagnosed with terminal lung cancer.
Having come to the end of a long and peaceful life, he knew what he wanted – no aggressive treatment, but to be made comfortable and to die at home with his wife and six children near him.
Mr Yap had his wish and his family was comforted knowing this was the case.
Together, they had made the decision in sessions with his doctors at Tan Tock Seng Hospital (TTSH), where he got to ask questions about his illness and weigh his options. His only daughter, who lives here, thought he would get better care here.
The hospital had suggested the family take part in advance care planning, in which the patient decides on his end-of-life care.
It made a huge difference for Mr Yap and his family, said his son-in-law, Mr Kelvin Lee, 42, a regional manager for an engineering company.
“Usually in such a situation, families are under a lot of stress and family members may have different opinions,” he said. He added that when the family heard what Mr Yap wanted, they simply had to find out how to go about fulfilling his wishes.
Mr Yap stayed in hospital for three more weeks and was sent home to Johor Baru by ambulance accompanied by a nurse. He had moved to Johor 10 years ago after retiring.
On the following day, Dec 30, 2009, he died in his sleep with his wife and children nearby.
Mr Lee said: “He was able to be with his family. He said his goodbyes and gave his final instructions. It made the going a lot easier.”
Though advance care planning has yet to gain a firm foothold here, it is quietly being put in place in more health-care institutions, which see the wisdom of giving patients autonomy over their final days.
Their preferences are recorded to ensure they are honoured, said Dr Raymond Ng, a registrar in the department of palliative medicine at TTSH.
The planning is not just for resuscitation orders or material decisions regarding funerals and organ donation.
On a deeper level, it is an exploration of what is important to a patient at the end of his life, said Dr Ng. The process to determine the patient’s wishes, discussed in advance with family members and physicians, is continual.
Such systematic discussion and planning could become more prevalent as the country seeks to commit more resources to end-of-life care.
Last month, Health Minister Gan Kim Yong said details of a national strategy for palliative care, now being formulated, would soon be announced.
Health-care institutions are all too aware of how end-of-life care tends to fall short.
A United States study of more than 9,000 patients in five teaching hospitals during the 1990s found discussions of decisions before death were rarely carried out, said Dr Ng.
More than a third of patients who died spent at least 10 days in intensive care and almost half were put on ventilation within three days of death. Patients had moderate to severe pain at least half the time.
The study showed how, without planning ahead, many patients may not get the peaceful death they desire.
In 2009, TTSH was thinking about formalising advance care planning which, until then, had been carried out piecemeal by the palliative care team.
In October that year, TTSH invited members of a US advance care planning organisation called Respecting Choices to train doctors, nurses and medical social workers, among other health-care workers, to facilitate advance care planning.
Pilot projects were started early the following year in various departments.
Dr Ng said: “We have spoken to patients with advanced organ failure such as advanced heart disease, chronic obstructive airway disease and neurodegenerative diseases.”
About 10 patients have documented their plans and the hospital hopes to extend the service to more groups.
It begins with an interview with the patient and his family, during which the facilitator uses a discussion template to understand the patient’s beliefs, values and preferences.
Once this is done, the details – such as place of care, type of treatment, extent of care and who the substitute decision maker is – will be documented. This document, typically about two pages long, will be scanned into the hospital system.
Advance care planning is meant to complement the Advance Medical Directive (AMD), also known as a living will, in which a person indicates if he does not wish to have extraordinary treatment to prolong his life in the event he becomes terminally ill and mentally incapacitated.
Unlike the AMD, advance care planning documents are not legally binding, said Associate Professor Chin Jing Jih, divisional chairman, medical board (integrative and community care) and senior consultant at the department of continuing and community care at TTSH.
“With advance care planning, you can change your mind any time,” he said.
But it provides an invaluable framework and a chance for talking about issues that many people do not consider before they become ill, said Dr Noreen Chan, senior consultant and palliative medicine specialist at the department of haematology-oncology at the National University Cancer Institute, Singapore (NCIS).
She said: “Assuming that ‘my family will know what to do’ is erroneous, because if you’ve never talked about it, how will your family know?”
The National University Hospital (NUH), in which NCIS is housed, is also running advance care planning pilot projects with different patient groups to determine the best approach.
The patient keeps the written document, with copies given to a close family member or other people like the primary physician.
Dr Chan said NUH is exploring the feasibility of maintaining digital documents as well, which could guide health professionals on the best treatment in accordance with the patient’s wishes.
What a patient wants, however, can become complicated if he is unaware of the true nature of his condition, said Dr Angel Lee, medical director of Dover Park Hospice.
In a survey carried out by the hospice last year, one in four patients who were admitted did not know about their diagnosis and one in two were unaware of their prognosis.
Among those who knew, many had not discussed their illnesses, their progression or the kinds of care they wanted, Dr Lee said.
They were not ready yet to engage in advance care planning.
To help its staff deal sensitively with such patients and their families, and yet be able to come up with a care plan, the hospice has its own systematic process for collusion – when the diagnosis or prognosis is deliberately being withheld from the patient – and tackling a patient’s questions and fears.
Staff at the hospice try to initiate advance care planning for all patients. “But in some instances where the patient or his family members fervently refuse to be engaged in such discussions, we respect their decision,” a spokesman said.
Dr Lee said it is hoped that with proper documentation, such care plans can follow a patient whether he is discharged to return home or re-admitted to hospital.
Advance care planning is also part of the multi-faceted approach taken by the Agency for Integrated Care (AIC), a national agency funded by the Ministry of Health (MOH), which advises patients on appropriate care.
An AIC spokesman said its Holistic Care for Medically Advanced Patients (Home) programme provides advance care planning and end-of-life medical and nursing care at home for patients who are terminally ill or suffering from advanced chronic obstructive pulmonary disease or end-stage heart failure. It also provides psychosocial support to patients and caregivers.
Each patient is supported by a counsellor, nurse and reviewing doctor.
All services are provided at no cost to the patients except for medication and other consumables. MOH has set aside more than $13 million for the programme over five years, said the spokesman.
Singapore General Hospital (SGH) will roll out an advance care planning programme in the first quarter of next year, focusing on those with heart or kidney failure, and advanced chronic lung disease.
It is a component of the overall care plan, with the aim of involving patients in the management of their conditions, said Associate Professor Lee Kheng Hock, director of the office of integrated care at SGH.
Email: wanching@sph.com.sg
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