The Right to Refuse Treatment

The right to refuse treatment is regarded as both ethical and legal. Despite the heated nature of debate surrounding this whole life/death issue, there is little or no debate about this course of action.
  • It can sometimes be burdensome to continue to treat a terminally ill patient with non-palliative treatment.
  • The American Medical Association sees no difference between withholding and withdrawing treatment.
  • Withdrawal of ongoing medical treatment can at times be obvious and difficult.
  • The right to refuse treatment does not extend to children (and babies) in New Zealand.
  • There is at times a failure of medical professionals to appreciate the limits of their power.
  • Withdrawal of food and water is considered one of the most painful and slow ways of dying.
The right of a person to make their own 'choice' about living or dying is often used by euthanasia advocates to generate support for legislation. The present situation has doctors and medical authorities making decisions to withhold or withdraw treatment against the wishes of their patient or his/her family.

People used to be more afraid of being kept alive hooked up to a machine. Once they were given the right to refuse treatment, this fear was no longer a problem, instead, if a patient refuses treatment, the decision is upheld.

If however a patient expresses a desire for resuscitation, antibiotics, a blood transfusion, a tube feeding or ventilation in order to prolong life a while longer, the request is often deemed 'inappropriate' and refused.

Herbert Hendin, medical director of the American Foundation for Suicide who has studied euthanasia in the Netherlands and elsewhere says:
"In practice it is still the doctor who decides whether to perform euthanasia. He can suggest it, not give patients obvious alternatives, ignore patients' ambivalence, and even put to death patients who have not requested it. Euthanasia enhances the power and control of doctors, not patients." Source: Seduced by Death, (W.W. Norton & Co 1997) p.214
Not Dead Yet, the national US disability rights and advocacy group opposed to legalisation of assisted suicide and euthanasia, points out:
"No bill to legalize physician-assisted suicide applies to all citizens equally, but singles out individuals based on their health status in violation of the American with Disabilities Act.

The legalization of physician-assisted suicide gives physicians the power to decide who will be given suicide prevention and who will receive suicide assistance and is, therefore, not based on individual choice and autonomy."
Section 11 of the New Zealand Bill of Rights Act 1990 states that everyone has the right to refuse to undergo any medical treatment.

The Code of Health and Disability Consumers Rights 1996 Right 7(7) states that every consumer has the right to refuse services and to withdraw consent to services.

The right to refuse medical treatment under the Bill of Rights Act and the above Code is limited to people who are competent to refuse consent.

It is important to note however that Right 7(2) of the Code states that every patient is presumed competent to give or refuse consent. This presumption can only be rebutted where there are reasonable grounds for believing that a patient is not competent to refuse consent.

Dr Richard Nicholson of the Bulletin for Medical Ethics in Great Britain comments:

"the first requirement of the Hippocratic Oath is "do no harm". If you are preserving life at all costs but in order to do so the patient reckons you are harming them... then you are in breach of that first "do no harm" requirement." (1)

The right to refuse treatment is admissible both ethically and legally. Despite the heated nature of debate surrounding this whole life/death issue, there is little or no debate about this course of action.

here is debate however about the quality of death, and that discontinuing treatment can lead to a death that is lengthy and uncomfortable, while advocates claim it is the fastest, most dignified way to go.

General Grounds for Limiting Treatment

In a Submission to the Select Committee of the House of Lords on Medical Ethics by the Lineacre Centre for Health Care Ethics, the general grounds for limiting treatment were outlined as follows:
  • The first being when the treatment is failing to achieve its desired objective, in either a palliative (care) or therapeutic way
  • The other is when the treatment is so burdensome to a patient that it is beyond reasonable expectation the patient should bear it.

Inappropriate Treatment
When a terminally ill patient is going through the final stages of their illness it can be deemed inappropriate to continue with treatment that is non-palliative.

Another instance, when therapeutic treatment is judged inappropriate, is when it would be impossible to achieve an approximation of health in that patient.

The Linacre submission points out the significant difference in withdrawing therapeutic treatment as opposed to ordinary care (i.e. food and water).

They also make the point that the doctors in this situation should focus strongly on whether the proposed treatment (whether it be cure, mitigation of disability or palliation of symptoms) can deliver the desired results for the patient.

There is a real danger of doctors focusing instead on the perceived lack of quality of life of that patient, and this must be avoided wherever possible.

Burdensome Treatment
A patient considering the financial consequences of treatment for different payers/providers may reasonably decide to forgo treatment even before a point is reached at which it would be obvious that acceptance of treatment would be unfair to others.
  • Treatment may be excessively costly: the cost in question may be to an individual, to a family, or to a health service. (See also Futile Care and Cost Containment)
  • Treatment may be excessively damaging to future possibilities. It may be reasonable to refuse chemotherapy for cancer because of its very likely effect on other bodily functions; eg that it renders one sterile and one is recently married and wanting a child.
  • Treatment may be excessively painful: there will be limits to each individual"s courage.
  • Treatment may be excessively taxing psychologically: a broad species of burden, of particular relevance when considering treatment for the very elderly. When there is progressive failure of a number of systems of the body, aggressive therapy can prove very oppressive.
  • Treatment can be excessively restrictive on physical liberty. The treatment may require constant care in hospital to extend life for a time. The patient may prefer to spend the time remaining in visiting children and grandchildren who are willing to provide ordinary nursing care.
  • Treatment may be excessively disruptive of one"s inner life. Prayer may be most important to a patient, who therefore reasonably refuse the analgesia which dulls his mind. (2)
The difference between Withholding and Withdrawing treatment
The American Medical Association claims there is no ethical difference between the two. In practise however the two are quite distinct.

Often the decision to withhold further medical treatment is done quietly, often without input from the patient"s surrogate decision-maker, whereas withdrawal of ongoing medical treatment can at times be obvious and difficult.

The British Medical Association"s (BMA) Medical Ethics Committee states that while it may be easier to withhold treatment than to withdraw that which has been started, there are no legal, or necessary morally relevant, differences between the two actions.

Right to Refuse Treatment and Children"s Rights
This right to refuse treatment does not extend to children and babies in New Zealand. Because children are dependent upon adults for all their needs special conditions override this right.

As the guardian of a child, a parent is expected to provide the necessities of life such as food, shelter, love and protection. One of the rights a parent is expected to provide is the right to adequate health services.

The state is obliged to ensure this right is met. When this does not happen the state has a responsibility to step in to ensure the safety and well being of an individual.

As a child grows and develops into an adult there is scope for the child to make his or her own health decision. There is no specific age in the Code of Health and Disability Services Consumers" Rights at which consent becomes legally valid.

Doctors will take the informed view of an older child into consideration when making a health decision but are still bound to override this when necessary.

This right of the state to intervene has been questioned in New Zealand and has come under public scrutiny as cases have come to light of parents refusing to provide treatment for children in their care.

The Tovia Laufau Case
Always a contentious issue, the case of thirteen year old Tovia Laufau hit the headlines in New Zealand in August 2000 when his parents were found not guilty of manslaughter but guilty of failing to provide the necessaries of life.

Tovia Laufau died of a cancerous tumour on his leg which weighed 15 kg and this had spread to his lungs. Despite warnings that the cancer would kill him, his parents, Peni and Faafetai Laufau, refused medical help.

They claimed that their son was too scared to go back to hospital and was old enough to refuse treatment. Starship hospital authorities could have requested custody of Laufau but did not as they did not want to estrange the family.

Polarised Public Opinion
Sandra Coney, Executive Director of the Women's Health Action Trust in New Zealand, feels there needs to be a more thorough investigation into the weight we give to medical values as opposed to wider social values.

In her report to the 8th Annual Medico-Legal Conference (2000) she talked in detail about the failure of medical professionals to appreciate the limits of their power.

She highlighted the fact that no legal action had been taken to bring health professionals to account for the deaths of 5 babies and brain damage of 8 others during inauguration of a faulty and unsafe chest therapy.

She also mentioned how their role as advocate for the child often puts them at odds with the child"s natural guardians.

"Doctors successfully campaigned to dilute the sections of the Crimes Act dealing with medical manslaughter so that now no action will be taken in most cases of negligence resulting in death. Yet parents can face the trauma of a criminal trial." (3)

The Williams-Holloway Case
Coney also refers to the Liam Williams-Holloway case, where treatment was refused in October 2000, just as Taufau"s parents were receiving their suspended sentence for the death of their son.

Williams-Holloway was given to the custody of Otago healthcare after his parents refused to continue what they thought was invasive chemotherapy treatment for their son. They believed the side effects of the chemotherapy vastly outweighed any advantages for their son.

Liam"s family went into hiding and the police incurred public criticism for pursuing them. This case instructed the public about the need for balance between medical and parental responsibilities.

"Liam Williams-Holloway's parents were given a 50/50 chance of successful treatment of Liam through chemotherapy. Clearly, the medical profession sees a 50% chance as mandating treatment. I have a friend who recently took the 50/50 chance in a similar situation - she died last month during treatment." (ibid)

Clearly this is a difficult issue to come to terms with. The key to resolution of this conflict is clear communication between the affected party (the child), the parents, medical professionals, and the legal representatives of the state.

Parents need to be assured that the whole picture is looked at and not just in terms of medical values. Sir Geoffrey Rose, an eminent Professor of Epidemiology in London, put it this way:

'If the patients share in decisions then the decisions will often be different because their values and ours are often different. Doctors regard health, and especially survival, as paramount and they tend to favour vigorous investigation and action. For patients, health is only one of a number of values and is often not the highest.' (4)

Life Saving Injection Could Have Saved Life
Another case to come to the New Zealand public"s attention early in 2002 was that of Caleb Moorhead whose parents Jan and Deborah were devout Seventh Day Adventists and ate only a strict Vegan diet with no meat, fish, diary or eggs.

Dr Kelly who consulted with Caleb and his parents at Starship Hospital saw a correlation between his mother"s diet and Caleb"s worsening medical condition. After the couple fled from the hospital he tried to contact them but they gone from their family home.

He wanted to let them know that an injection of B12, followed by daily supplements, could not only save Caleb's life, it could probably partially reverse his brain damage.

When the case came to court after Caleb"s death Dr Kelly told the court Caleb's life could have been saved up until half an hour before his death if his parents had phoned for an ambulance.

Justice Rhys Harrison in summing up the case in the High Court was critical of the lack of care given to Caleb. He stated: "In other words he was starving to death. He must have been suffering great and needless pain."

The Moorheads were convicted of manslaughter after refusing to provide Caleb with the necessaries of life and were sentenced to jail for 5 years.

Food and Water - Medical Treatment
Food and water has come to be regarded as medical treatment where a person cannot feed themselves. When this happens it is renamed assisted nutrition and hydration.

As a prescribed treatment, this can then be removed at a physician"s discretion where it is believed that further "treatment" is futile.

This is considered one of the most painful and slow ways of dying and was cited in the Leslie Burke case in Britain as a reason to continue treatment. Mr Justice Munby, in the Burke case, stated that the withdrawal of assisted food and fluid from patients causes:

"pain, discomfort and extreme distress that result(s) from malnutrition and dehydration."

Read more about the Symptoms of Dehydration