Advance Care Planning: Sign this form to have the final say

More patients are asked to take part in advance care planning, which empowers others to make medical decisions for them should they be unable to do so themselves
By Joan Chew, The Straits Times, 10 Jul 2014

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

Key changes to the palliative-care sector
By Joan Chew, The Straits Times, 10 Jul 2014

The palliative-care sector has been given a booster shot, with the Ministry of Health (MOH) investing in four areas - improving the quality of care, expanding services, ensuring affordability and raising awareness.

Health Minister Gan Kim Yong announced this at the sixth Palliative Care Conference at Singapore Polytechnic on June 28.

Today, between 5,000 and 6,000 people receive three types of palliative care - inpatient service, day-care activities and home-care assistance - in the community, said an MOH spokesman.

MOH projected that by 2020, more than 10,000 will require palliative care.

Here are the key changes announced by Mr Gan:

National Guidelines For Palliative Care

This new document spells out what is required for individualised patient care; how caregivers and families should be supported, including the bereavement period; what is required for good staff and volunteer management; and what is needed for safe care.

MOH will partner the Singapore Hospice Council, the umbrella body for palliative care in Singapore, to promote and implement these guidelines in different care settings.

Care providers will get help to meet these guidelines, such as through voluntary self-assessment tools, staff-training programmes and quality-improvement projects.

Manpower and training

From this month, a new graduate diploma in palliative medicine will allow more doctors to be trained in palliative care.

The one-year part-time course is launched by the Chapter of Palliative Medicine Physicians, in partnership with the division of Graduate Medical Studies at the National University of Singapore.

Home-care capacity

The capacity of home palliative care will be increased by at least 1,000 more places by 2020, up from about 5,000 now.

Services will also be extended to patients with end-stage organ failure and not only to cancer patients.

Inpatient capacity

Beds for palliative care will be increased to at least 360 by 2020, from just 147 now.

There are also plans to set aside more beds in community hospitals for patients on palliative care.

End-of-life care at nursing homes

Staff at 14 nursing homes will be trained in advance care planning, geriatric care and end-of-life care.

The homes have a total of 2,800 beds. The training will be conducted by the National Healthcare Group and Alexandra Health System.

Medisave withdrawal limits

From Jan 1 next year, the daily withdrawal limit for those staying in hospices will go up from $160 to $200, and the lifetime limit for home palliative care will rise from $1,500 to $2,500.

However, this cap will be lifted for those with terminal illness, such as cancer or end-stage organ failure. These patients can use as much as they want from their Medisave accounts.

Home palliative care funding

From this month, home palliative care providers will be funded based on the number of patients they look after, instead of the number of visits they make, reflecting a shift of focus on outcomes.

This move enables providers to plan and deliver patient-centric services. They also get greater flexibility to test new models of care.

Public education

The Agency for Integrated Care will work with voluntary welfare organisations to raise awareness of advance care planning, with an aim of reaching out to 1,500 seniors in the community.

It also aims to train at least 150 people at voluntary organisations in the next three years as advocates for advance care planning.

Honouring last wishes
By Joan Chew, The Straits Times, 10 Jul 2014

When you are lying on a bed in the intensive care unit of a hospital, so sick that you are no longer able to interact with anyone, what would you choose?

Do you want to have a tube placed into your windpipe to help you breathe, through a procedure called endotracheal intubation?

If your condition worsens, do you want to be cared for in a hospital or elsewhere, such as in a nursing home, hospice or at home?

It may seem unthinkable that someone in such dire straits can still make choices. However, he can, if his preferences have already been made known to the health-care team and his loved ones, in what is known as advance care planning (ACP).

Drafting an ACP document involves a series of conversations with the patient, substitute decision-makers and an ACP facilitator - usually a doctor, nurse or medical social worker.

Several public health institutions here started offering ACP since 2010. So far, their efforts appear to have helped patients to fulfil their final wishes, statistics show.

Since 2012, of the 28 patients who did an ACP and subsequently died at National University Hospital, 15 died in their chosen places, 22 received their preferred treatment and 12 had both wishes met.

In all, 78 patients, including those from National University Cancer Institute, Singapore (NCIS) and National University Heart Centre Singapore, made ACPs during this period, said Dr Noreen Chan, a senior consultant at the department of haematology-oncology at NCIS.

At Tan Tock Seng Hospital (TTSH), more than 95 per cent of patients who signed an ACP and died at the hospital between October 2011 and June this year received their preferred medical treatment, said Dr Raymond Ng, a consultant at the hospital's department of palliative medicine. For example, some did not wish to proceed with cardiopulmonary resuscitation (CPR).

Another 23 per cent died in their chosen places, added Dr Ng. The findings came from an audit of 172 patients. In all, 741 patients did an ACP at TTSH and 348 have since died.

Similarly, most of the patients at Khoo Teck Puat Hospital (KTPH) who had done an ACP had their wishes honoured.

The hospital helped 312 patients with their plans, of whom 137 have died. About 80 per cent of them were treated in their preferred places and 64 per cent died in their chosen places.

WHY WISHES WERE NOT MET

However, all three hospitals did not analyse why some patients' wishes, as outlined in their ACPs, were not met.

Doctors say reasons may include a lack of caregivers at home, while some caregivers may find it challenging to care for the patient at home. The rapid deterioration of a patient's condition can also prevent him from being sent home in time to die - if that was what he wanted.

Dr Siew Chee Weng, a locum principal resident physician at KTPH's department of geriatric medicine, noted that reasons as to why wishes are not met are "usually medical rather than social".

AT KTPH, one patient received CPR when she did not want it. Her family, although aware of the ACP, had called for an ambulance when she vomited blood and the paramedics applied CPR as they were not aware of the details.

PLUGGING THE GAPS

This is a problem which Singapore Hospice Council chairman R. Akhileswaran wants to solve, by getting paramedics to check ACP documents before they proceed with CPR.

This is because anxious family members may still call for an ambulance, even after they have been told not to do so in order to honour the patient's wishes, added Dr Akhileswaran, who is also the chief executive of HCA Hospice Care, the largest home palliative care provider here.

Members of the Singapore Hospice Council are now in talks with the Singapore Civil Defence Force to plug this gap.

Serious illnesses can also strike the young, which is why his colleague, Dr Chong Poh Heng, is offering ACP to children and young adults with life-limiting or life-threatening conditions, under the Star Pals (Paediatric Advanced Life Support) home-care service by HCA Hospice Care.

Since the programme started in April 2012, it has served 110 patients, of whom 50 have completed ACP. However, fewer than 10 were done with input from a child.

Besides the fact that some young patients are cognitively impaired, others chose to let their parents decide their treatment. Other parents chose not to "burden the child with such decisions", said Dr Chong, programme director of Star Pals.

Sixteen-year-old Nina Adriana, who suffers from advanced chronic lung disease, took part in the ACP process with her housewife mother and cab-driver father last September.

In the event that she collapses suddenly due to respiratory or cardiac arrest, she has opted to have endotracheal intubation and ventilation for no longer than five days. In addition, she has declined external cardiac compressions and advanced life support measures.

Dr Chong wants to help more patients like her through the Paediatric and Young Adults ACP Taskforce, which he co-chairs.

The taskforce - set up last year with eight health-care professionals, including paediatricians, social workers, counsellors, and nurses and doctors trained in palliative care - is looking to introduce workbooks for children and parents to prompt discussions about ACP.

They are also looking to roll out the ACP forms used by his Star Pals team to other institutions that treat children with life-threatening conditions, as well as train other health-care professionals on how to offer ACP to their young charges.

Despite their young age, such conversations can help parents and doctors to understand the child's mentality towards medical treatments and uncover his fears about dying.

Dr Chong has had some children express their anxiety that their parents will forget about them when they die, or worry that their toys may be given to people they do not approve of.

"If the odds of dying are so high, it may be more important for a child to go to school to stay connected with his friends than to receive aggressive treatment in the hospital," he said.

Currently, Nina needs to be connected to oxygen devices around the clock to help her breathe, but she still attends school regularly.

She has told her parents and Dr Chong that the only thing she fears is that she cannot breathe.

"It is not all about what we want for her," said her mother, Madam Suriani Saini, 39.

"It's also about what she wants for herself."

It helps to be ready for the end
By Poon Chian Hui, The Straits Times, 10 Jul 2014

Death is always out there, somewhere.

It looms in the newspapers, announcing its presence as gory murders, accidents and in obituaries; in most blockbuster movies, where characters perish in all ways imaginable; and in video games, where you can "die" many times over.

Closer to home, one may have experienced the demise of elderly loved ones, while those with pets may have endured the grief that death brings when their animal companions depart.

But have you thought about your own death? Specifically, how you would like to be cared for as you approach the end of your tether.

Morbid as it may be, the process goes beyond outlining medical care to doctors and family members.

In a survey of 60 patients at the National Heart Centre Singapore, 70 per cent felt the discussion helped them to reflect on their personal values and identify their end-of-life care preferences.

Indeed, when you are asked to choose how you want to bow out, it indubitably makes you ponder about what matters the most.

Is dying at home, in your own bed, meaningful to you? Or is it enough to have your loved ones by your side, be it at a hospital or elsewhere? Would you refuse life support or continue to cling on for awhile, just so your family members have time to say goodbye?

Whatever your preferences may be, it is important to discuss them with your loved ones.

A study by Singapore General Hospital published in 2012 found that patients were often at odds with their kin over final wishes.

In one in three cases, patients and their closest relatives had different ideas about life support.

Some may argue that death is too taboo to be spoken about so openly. Yet, it is inevitable.

Just as we seek to find meaning in life, there is, perhaps, also some meaning to be found in death.

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