When patients are asked whom can speak on their behalf and express their wishes when they no longer can, the question is usually met with silence
Spelling out medical preferences in advance takes the guesswork out of situations where patients are too ill to speak for themselves.
If a loved one has a slim chance of recovery after a heart attack or stroke, how does the family feel about life support? And who will decide what to do if the patient is too ill to express his wishes?
These difficult but necessary questions are often raised with patients at the National Heart Centre Singapore (NHCS). Seeing how family members struggle to make decisions in the absence of a clear directive from the patient, NHCS started a project in 2012 to increase awareness about advance care planning.
The process involves conversations between patients, family members and an advance care planning facilitator. During discussions, patients can nominate a trusted person to represent their views if and when they cannot do it themselves. NHCS has about 30 trained facilitators, including doctors, social workers and clinical coordinators.
“Patients tell us about the values and beliefs that are important to them, and their preferred choices if a medical situation arises whereby they cannot communicate their wishes,” said Ms Clarice Ng, Senior Medical Social Worker, NHCS, and one of the facilitators.
Another facilitator, Ms Cindy Lau, Senior Clinical Coordinator, NHCS, gave an example of this. “For some patients, being able to eat independently is important. So if they have to be on permanent tube-feeding, they would rather not go through it.”
Discussions also centre on the use of cardiopulmonary resuscitation in the event of a cardiac arrest, the extent of life-prolonging medical intervention, and end-of-life care.
The patient’s wishes and decisions are documented in standardised forms from the Agency for Integrated Care, and uploaded onto the National Electronic Health Record, the national database of the medical history of patients.
Why planning ahead matters
Ms Ng said the unpredictability of cardiovascular conditions make planning ahead important, because lifesustaining machines can prolong lives for months or years.
“We’ve seen heart patients put on life support machines after collapsing from a serious cardiac problem or stroke. They remained hooked up to these machines for months. In such cases, it’s important for us to know their wishes: Do they want doctors to continue treatment to the very end, at the expense of a prolonged stay in intensive care, intubation and not being able to recover?” she asked.
Ms Ng encourages patients to nominate one or two people to be their voice if it is needed in the future, and to share their decision with the rest of the family.
It’s not just for the ill
Planning for the future is not just for the sick or elderly. Healthy people are encouraged to have these discussions too.
Ms Ng said those ready to discuss their future plans usually have personal experiences with life-and-death issues. They might have seen family members or friends undergo life-sustaining medical treatments, or struggle to make difficult healthcare decisions for loved ones.
“One man we spoke to had a friend whose elderly mother was unconscious after a serious hip fracture, and he had to decide whether to let her have high-risk surgery or go peacefully. He saw how difficult it was for his friend to decide without being able to consult his mother. This made him keen to make his own future plans in order not to burden his family.”
Ms Lau said such people are in the minority. Most fight shy of advance care planning due to superstitions and misconceptions.
“Some patients think that once you broach the topic, it means their medical condition is worsening. Others assume their children know what they want. But when we ask them who can speak on their behalf and express their wishes [when they no longer can], the question is usually met with silence,” said Ms Lau.
Another common misconception is that an advance care plan is set in stone, when in reality it is not a legal document, and takes effect only when the patient can no longer communicate his wishes. It can be reviewed regularly, even after signing, and as the patient’s medical condition and social circumstances change.
So far, 450 NHCS patients and their family members have drafted advance care plans. The team has also extended its free service to the public, including those with other medical conditions.
NHCS has received five awards for its efforts in engaging patients in advance care planning, including the Gold Award at the Team Excellence Symposium 2014 and Best Team Award at the Singapore Health Quality Service Award 2015.
Taking it step by step
- Think about what living well means to you, how your health may change in the future, and what is important to you at the end of life.
- Discuss your wishes and goals for care in the future with your loved ones, and choose one or two trusted individuals to be your voice, for when you are unable to communicate those wishes.
- You may review, update or change your advance care plan at any time according to changes to your health and social status.
- Make an appointment to discuss and record your wishes with a trained advance care plan facilitator. Call NHCS at 6704-8966, 6704-8967 or 8299-3548 (from Monday to Friday, 8am to 5pm).
Source: Singapore Health © Singapore Press Holdings Limited. Permission required for reproduction.