This article belongs to a three-part series on the documents that you can make to record your healthcare decisions and preferences to be used in the event that there is a difficult medical decision to be made and you are not able to speak for yourself. Do check out the other articles:
Content
What is an ACP?
An ACP is a non-legally binding document that is made when you are mentally capable of making decisions and used during instances where you lose the ability to express your healthcare preferences.
It contains
A record of your healthcare preferences in response to several examples of difficult medical situations
Your values and beliefs on what constitutes a good life and death
Your nominated healthcare spokesperson(s) (NHS)
A soft copy of the completed ACP will be uploaded onto the National Electronic Health Record (NEHR) which is accessible by all public healthcare institutions and some private healthcare institutions.
Why is an ACP helpful?
Express your healthcare preferences in advance
When you are not able to communicate your wishes due to a medical condition, it is difficult for the healthcare team to guess what kind of medical treatment you would have wanted for yourself. Would you have wanted aggressive treatment? Or would you have wanted to stay out of hospital as much as possible?
Making an ACP helps the healthcare team understand you better and predict what decisions you would have made if you had mental capacity.
Unlike an LPA and AMD, ACP is a non-legally binding document. If you change your mind and would like to amend the ACP document, you do not need to do so via the court or the Office of Public Guardian (OPG) - all you will need to do is to go to an ACP centre to revoke your previous ACP and/or make a new one.
Starts conversations on what it means to live and die well
Death is a taboo topic for most people. Most people don't think about what it means to live and die well until they are directly faced with such a situation. However, if we wait until then, it might be too late for you to express your opinion as you may be unconscious or mentally incapacitated.
When making an ACP, the ACP facilitator will take you through a series of bleak medical scenarios and assess your response in those scenarios (e.g. your medical treatment preferences) and you have responded as such.
We all have different definitions on what is a life worth leading. Some people would consider a life dependent on a breathing machine as not worth living and would rather be allowed to die peacefully. Others may believe in carrying on with life for as long as possible as long as they can be with their loved ones.
Who can make an ACP?
Anyone who has decision-making capacity can make an ACP.
The type of ACP best suited for your needs depends on the health conditions that you have.
What types of ACP are there?
Types of ACPs
General ACP
A General ACP is for individuals that are healthy or with early chronic disease. In addition to the points stated in What is an ACP?, it will also involves exploring your goals for medical care in the event that you have a severe brain injury that the doctors believe to be irreversible.
Example of exploring your care wishes in a given scenario (source: ACP booklet)
An example question is: "If I have an injury or illness, and my doctors believe that further aggressive treatment will not reverse my medical condition and that I would have a low chance to recover my ability to make decisions for myself and I would not know who I am, who I am with, or where I am, I would prefer the following:
Make comfort the goal of my care and do not prolong my life in this condition. How I live my life means more to me than how long I live; or
Continue to provide all necessary life-sustaining treatment until the following outcomes happen to me which I find unacceptable (may refer to length of time, more complications, discomfort, or burden on family). "
Disease-Specific ACP
A Disease-Specific ACP is for individuals with organ failure with recurrent hospital admissions and declining function. Examples of such illnesses includes end stage Chronic Obstructive Pulmonary Disease (COPD), End Stage Renal Failure (ESRF) and Heart Failure.
In addition to the points stated in What is an ACP?, it will also cover care wishes in the following scenarios:
Serious disease complications with low chance of survival
Serious disease complications with low chance of recovery of physical function or ability to communicate and will require total nursing care
Serious disease complications with high chance of mental incapacity and will require total nursing care
Specific disease-related care
Currently, disease-specific ACP is only offered at Singapore General Hospital (SGH) and National Heart Centre Singapore (NHCS).
Preferred Plan of Care (PPC) ACP
A PPC ACP is for individuals with advanced illness with a prognosis of approximately 1 year. In addition to the points stated in What is an ACP?, it will also cover care wishes with regards to:
Care options on cardiopulmonary resuscitation (CPR)
Care goals for medical intervention when one suffers a potentially life-threatening crisis - comfort measures only, limited additional intervention, or full treatment
Additional care preferences (including ventilation, antibiotics, inotropes, artificial feeding, dialysis)
Here are more information on the terms that used in a PPC ACP:
Cardiopulmonary resuscitation
CPR involves vigorous compressions of the chest to pump the heart externally. It is done during instances when there is no pulse felt. Is it most beneficial for healthy people whose heart stopped suddenly from an accident or heart attack and whose underlying condition can be effectively treated.
The outcomes of CPR is better when the person is young, healthy, and if the CPR is initiated within 5 minutes of a cardiac arrest. In reality, less than 17% of hospitalised patients are successfully resuscitated following CPF. This number drops to less than 5% if they are people who have end-stage chronic illness and less than 2% if they are frail elderly living in long-term care facilities.
Artificial ventilation
Artificial ventilation involves the use of a ventilator to support the breathing of a person when it has stopped or is inefficient. Ventilation can be done via a tube inserted via a person's mouth and goes to the lungs. As this is very uncomfortable, the person will usually be sedated with medications when they are intubated. In some cases, an external mask can be used to assist breathing instead of having to use a tube.
Artificial nutrition
When a person is unable to eat via the mouth, nutrition can be obtained via:
A liquid-based diet that is delivered by a tube inserted via the nose (or mouth) that goes directly to the stomach or intestines; or
A specially formulated mixture of nutrients and minerals that is delivered directly into the veins (however, this can method should only be used for a limited period of time to avoid complications).
Antibiotics
Antibiotics are medications used to treat bacterial infections. It can be given in oral form or directly into veins through an injection. In some cases, antibiotics may be able to alleviate suffering for a dying person if the infection is the cause of pain or breathlessness.
However, in an actively dying person, antibiotics may delay the dying process by temporarily reversing or slowing down what could have been a fatal event in an incurable illness (e.g. curing pneumonia in a person with advanced lung cancer).
Inotropes
Inotropes are medications that increase the force of the heart's contraction. It is used in certain circumstances when the blood pressure is very low. However, as it also causes blood vessel constriction, a possible complication is that the blood circulation to the fingers and toes may be critically reduced leading to gangrene.
Dialysis
Dialysis is a method of removing toxic waste products when the kidneys are not working. It involves needles and several hours of continuously removing and filtering the blood of a person.
Comfort measures only
Medical treatment with the goal of comfort allows the natural dying process to occur while making sure that the person is as comfortable as possible. This can involve the use of providing oxygen and/or medications that reduce pain, breathlessness, and anxiety. It also involves ensuring that the person's psychological or spiritual needs are met.
Limited additional intervention
This involves a trial of treatment which can include oral or intravenous medications. It can occasionally involve non-invasive ventilation (ventilation via the application of a mask instead of a tube) if the person had not made a prior request to reject this form of treatment. "Limited additional intervention" does not include intubation or long-term life support measures.
Full treatment
Full treatment refers to providing all relevant forms of medical treatment that is available including CPR, invasive ventilation and transfer to the Intensive Care Unit (ICU) if required. These measures are subject to the assessment and decisions of the healthcare team.
Preferred place of care
When making a PPC ACP, you can indicate your preferred place of care in the event that you deteriorate. The options include: own home, nursing home (if you are already a resident of the nursing home), hospice or hospital. You can also opt for a trial of treatment in the above-mentioned locations before transfer to hospital.
Preferred place of death
You can indicate your preferred place of death. The options include: own home, hospital, hospice or nursing home (if you are already a resident of the nursing home),
How will my values and beliefs be assessed when making an ACP?
Beliefs about what makes a good life
During the ACP session, the facilitator will ask your questions about your lifestyle and what activities you find the most meaningful e.g. being with your family, spending time with your hobbies, being able to contribute to society.
Examples of questions exploring what makes a good life (source: ACP booklet)
Experiences with mortality
The facilitator will also ask about your experiences with death or near death of a loved one and if you have any thoughts about it. Some people may be traumatised by the memory of seeing their loved one in the ICU and may not want the same treatment for themselves.
Example of a question exploring your experiences with mortality (source: ACP booklet)
Beliefs about what makes a good death
The facilitator may ask you questions on what helps you deal with challenges. This could involve questions about your religion, culture and personal relationships.
You may also be asked what your greatest fears and worries are and whether you would like to be alone or surrounded by people during your final moments.
Example of a question exploring your fears (source: ACP booklet)
How do I make an ACP?
Make an appointment for an ACP session
If you are a patient at a hospital or polyclinic, do speak to your doctor to obtain a referral to their ACP clinic.
If you are generally in good health, you can make a physical appointment or video conference appointment at one of the providers on this list.
Choose your Nominated Healthcare Spokesperson(s)
Your NHS is someone who will speak for you on your behalf when you do not have the capacity to make your own decisions or communicate your wishes. He/she should be someone who you trust has your best interests at heart and be someone who knows you very well.
Your NHS should be at least 21 years old and be able to remain calm and make decisions during stressful situations.
You can nominate up to two NHS. Ensure that both your NHS are clear about your wishes and agree to respect them.
Pre-preparation (Optional)
You can use this guide prepared by the Agency for Integrated Care (AIC) to help you reflect on your values and beliefs about what a meaning life is. You can bring the completed booklet to the ACP appointment to help facilitate discussions.
When will an ACP be used?
An ACP will be used when you do not have to ability to indicate your healthcare preferences. The preferences you have stated in the ACP will be used as a guide for the healthcare team to follow. Your NHS will assist with the decision-making process on your behalf.
How much does an ACP cost?
The cost of an ACP is approximately $0-50. Do check with the specific ACP centre that you are planning on visiting on what their charges are.
Conclusion
Making an ACP helps the healthcare team understand you better and predict what decisions you would have made if you had mental capacity.
The process of making an ACP will also help you to reflect on what it means to live and die well and gain more certainty of the type of care that you want at the end of life.
As the ACP is non-legally binding, it tends to be easier for you to change your decisions and have the changes reflected on your records.
This article belongs to a three-part series on the documents that you can make to record your healthcare decisions and preferences to be used in the event that there is a difficult medical decision to be made and you are not able to speak for yourself. Do check out the other articles:
Useful References