During the process of dying, many things may happen. A patient may have a heart attack, suffer from kidney failure, or have a stroke. Prior to the 1960s, the mode of treatment is usually decided by the doctor. This has changed because of the development of more treatment options, many of which are invasive, burdensome, and expensive, and some of which offer less than ideal efficacy; the emergence of the legal doctrine of “informed consent”; and the rise of individual rights. More and more people would like to have a greater say in their own treatment programme. And they should, because human stewardship means that they have to take care of their own bodies.
As such, the terminally ill should have a say on the extent of the treatment they receive. To guide us on limiting treatment, Dr Robert Orr, Director of Clinical Ethics at Loma Linda University Medical Centre and Clinical Co-Director of the Centre for Christian Bioethics at Loma Linda University in the United States, offers some advice:
- Prepare in advance by thinking ahead about biblical principles, personal values, and other factors which might influence what you want for yourself or for loved ones. Talk with family members and your physician about these matters, and consider preparing a written advance directive.
- When confronting these difficult decisions, gather as much information as possible from physicians, books, classes, etc. Request second opinions if there is significant uncertainty.
- In some cases, it may be appropriate to seek an ethical opinion as well. Most hospitals have an ethics committee and an increasing number have ethics consultants to help in these situations.
- Try to have realistic expectations. Medicine is part science, part art, and part ministry. But it is a human endeavour and, as such, is fraught with human limitations.
- Do not try to make these decisions alone. Your own pain and stress may colour your thinking. Involve fellow believers, search the Scripture, use other Christian resources, and above all, pray earnestly for the guidance of the Holy Spirit.
- Accept the fact that, even with one God, one Bible, and one Holy Spirit, Christians may honestly disagree about what is the proper course of action in a given situation, so others may not always agree with your decision.
- If doubts arise about decisions already made, rest in the knowledge that before God and with the help of others you trust you made the most medically informed, morally responsible decision you could make at the time. No one can do any better than that.
8 The results of this discussion can be written into a Living Will. This is a legal document that spells out what types of treatment should and should not be given. It may define treatment measures and specify when treatment must stop.
Treatment can be roughly divided into ordinary and extraordinary categories. Ordinary medical treatment includes medications, operations, physiotherapy and other medical modalities that are generally accepted by doctors worldwide for the treatment of specific conditions. Extraordinary treatment refers to modalities that are unusual, experimental or unproven in their efforts to prolong life. The differentiation between ordinary and extraordinary measures is often not so clear-cut. One example is the use of artificial, mechanical ventilation. A 30-year-old man with meningitis who has stopped breathing is put on a ventilator to help him breathe. That is considered ordinary treatment. The chances of recovery with treatment with antibiotics and other supportive care are good. However, putting a 79-year-old woman with uncontrolled hypertensive and massive heart and kidney failure on a ventilator is considered extraordinary treatment. This is because she is already dying and the treatment only delays the inevitable.
A living will, made up by the woman and her family (before she became so sick) may specify that if she should suffer a heart attack or other complications that make her unable to breathe, then everything possible to resuscitate her should be done, short of putting her on a ventilator. In this manner, a living will gives clear instructions on limiting treatment. It may also give instructions on ordering treatment. One could specify that treatment must go on and not stop. That will stop the removal of the feeding tube from a patient in a persistent vegetative state. Other types of instructions are Advance Medical Directives, Medical Directives and Value History Advance Directives.
In Singapore, the Advance Medical Directive (AMD) Act was passed in 1996. It allows patients to decide in advance what medical treatment they want or do not want if they are unconscious and unable to make these decisions. The AMD is to be drawn up in the presence and with the advice of a patient’s personal physician and will be lodged with the AMD Registry. Physicians treating patients will not know of this AMD except in cases when extraordinary medical treatments are needed — the physicians will then have to consult the Registry. Patients are under no obligation to inform other physicians about the AMD. This is to safeguard their interests and ensure that the AMD will not unduly influence the medical care they receive. According to the Singapore Ministry of Health, 2,654 people have registered their AMD since the Act was passed but only one has used it to date.
Mr Goh, whom we met in the previous chapter, and who is suffering from amyotrophic lateral sclerosis (ALS), signed an Advance Medical Directive after consulting his wife. The AMD expresses his wish that he does not want to be hooked up to a ventilator when he is unable to breathe as a result of paralysis of the respiratory muscles. He said, “I do not want my wife to bear the burden of deciding when I should go and be blamed later for pulling the plug.” It must be noted that the term Advance Medical Directive in Singapore is used to describe the living will or medical directive in other countries.
Outside Singapore, an advance medical directive is a legal document to appoint a healthcare personnel as a proxy. This proxy is authorised to make decisions for the patient if he is unconscious and unable to decide for himself. This directive has an advantage over the living will in that it is more flexible, and should thus obviate the need for legal intervention in an ambiguous situation. In the case of a medical directive, the patient himself writes in the document which of the 12 treatment modalities he would or would not want to have if he should be incapacitated in four different clinical situations. The modalities listed are: cardiopulmonary resuscitation, mechanical breathing, artificial nutrition, artificial hydration, major surgery, kidney dialysis, chemotherapy, minor surgery, invasive diagnostic testing, and prescription of blood and blood products, antibiotics, and pain medications.
The four clinical situations are: permanent unconsciousness, persistent unconsciousness with a small chance of improvement, irreversible dementia accompanied by a terminal illness, and irreversible dementia without other illness.
In a value history advance directive, a person is appointed to make decision based on the values of the patient rather than the treatment modalities. It is an advance directive designed such that surrogates can make decisions for a patient after he has lost his competence. They propose that more important question, “What are the patient’s values?” They then offer an alternative advance directive that focuses on the values rather than their desires about specific treatment modalities.
It is good Christian stewardship to lay out specific limiting treatment instructions. Then we can be sure that our wishes are known and that our physicians will not prolong our death when it is due. It is also good stewardship to have a will for our affairs in order, so that estate management will not be a hassle for our family.
Alex Tang, A Good Day to Die: A Christian Perspective on Mercy Killing (Singapore: Armour Publishing, 2005), 96-100