Preparing an advance health directive is not as straightforward as patients and GPs may think, writes JOHN KRON.
PATIENTS have the right to refuse treatment even when it is life saving. However, this right is undermined when patients don’t fully understand their options.
Dr Barbara Dignam, a GP in Townsville in northern Queensland, recalls a 69-year-old patient named Mary who was scheduled to undergo a total hip replacement.
Mary’s orthopaedic surgeon told her that because of her age, high blood pressure and the large blood loss normally associated with the surgery, she may need to spend a brief period in intensive care as a precautionary measure.
It prompted Mary to put her affairs in order. She went to a lawyer, checked her will and prepared an advance health directive. On the item asking “if you have a cardiac arrest, do you want to be defibrillated?” she answered no.
“She had got it into her head that you end up, in her words, as a vegetable after a heart attack,” Dr Dignam says.
“I had to explain that defibrillation was done for healthy hearts and that she would only be a vegetable if there was associated severe brain damage. While there was a risk, in her case it was not likely. She changed her advance health directive accordingly.”
Informed consent is a key ethical issue when preparing advance health directives for emergency treatment, which may be referred to as do-not-resuscitate (DNR) orders. The consequences can be crucial.
Dr Thomas Faunce, who lectures in law, health and ethics at the Australian National University, says hospital staff are so geared to saving lives “that they can err on the side of caution if there is doubt that an incompetent patient was not sufficiently informed when preparing a directive”.
Dr Faunce says the experience of competent patients changing their minds when facing death’s door reinforced this approach. “I recall a case where a colleague had a patient with a terminal illness who was brought into an intensive care unit due to pneumonia,” says Dr Faunce, who is also an ICU registrar at Canberra’s Calvary Hospital.
The patient had an advance health directive not to be put on mechanical ventilation. However, the patient told the doctor “if I lose consciousness, forget what’s written”.
In another case, an unconscious patient was brought in with an advance health directive not to be intubated, but the family intervened.
“They told the staff that the patient was intending to change the directive but hadn’t got around to it. The staff felt compelled to go along with the family,” Dr Faunce says.
The wording in an advance health directive must be specific to ensure the patient’s wishes are most accurately reflected and best interests served.
Dr Faunce recently helped a patient prepare a statement which said: “If I am aged 90 years or over and found unconscious at home, do not call an ambulance”, rather than simply writing “do not resuscitate”.
Patients differ greatly in their understanding of the word resuscitation. “For some it means dramatic scenes of electric paddles, whereas for others it’s IV therapy. Some are talking about no treatment that would prolong life that is painful and others include feeding,” Dr Dignam says.
“Most people have only a vague idea about what might realistically happen to them or their loved ones, and many do not know what responses might be possible in a hospital versus the patient’s own home,” she says.
“Many have unrealistic expectations about the clarity of the decision-making process that will pertain at the time, and mistakenly believe that they will feel the same about quality of life issues when they are older and dying as they do when they are young and well.
“They also may inadvertently fail to appreciate what is suffering for them — watching and waiting for someone to die — compared with what suffering the dying person is actually experiencing,” Dr Dignam says.
However, the focus should not exclusively be on getting the wording right. “Advance health directives have limitations. Circumstances change and there’s only so much that can be accurately anticipated in writing,” says Dr Bernadette Tobin, director of the Plunkett Centre for Ethics in Health Care at Sydney’s St Vincent’s Hospital.
“What is more important is that patients be encouraged to talk with their family, doctors and other relevant people about their hopes for and fears of treatment, and to communicate … their wishes about treatment should a situation arise in which they are unable to make their wishes known,” Dr Tobin says.
“This enables better decisions to be made when situations occur that hadn’t been anticipated when the patient is incompetent.”
Dr Faunce says as much time as possible should be set aside for considering these issues and discussing them between the patient, family and GP. At a minimum a second appointment is recommended.
A difficult issue for many doctors is deciding on the best time to raise the question of advance health directives if the patient doesn’t raise the issue.
Dr Malcolm Parker, a senior lecturer in ethics and professional development at Queensland University’s medical school, says the uptake level of advance health directives is still a work in progress, despite legislation in several states.
“With the increasing ageing of the population GPs have a responsibility to do more to raise the issue with patients,” says Dr Parker, a Brisbane GP.
“But at the same time there are limits. First of all, the burden shouldn’t fall only on the shoulders of GPs. Patients and health authorities are equally obliged to improve the uptake.”
The resistance is understandable. “People are only human. The same immediate response to save life also leads many people to avoid talking about death and death-related issues,” Dr Parker says.
Furthermore, it may not necessarily be in the best interests of the patient to raise the issue of preparing an advance health directive.
“The notion of therapeutic privilege is justifiably criticised … some doctors may hide behind it as an excuse for not communicating over difficult issues. Nonetheless, it occasionally has a point,” Dr Tobin says.
“In admittedly rare circumstances, raising the issue of the existence of advance directives may … cause a patient to panic and become excessively anxious and worried,” she says.
One approach to getting the timing right is to use opportunities such as routine check-ups to raise the issue, which facilitates discussion in calmer circumstances.
“Other opportunities arise with medical events such as before going into hospital, respite care or a nursing home, or if the same thing happens to a close relative,” Dr Parker says.
“One needs to be careful, however, that the medical event is appropriate, and doesn’t make patients worry unnecessarily that the doctor knows something sinister that the patient is not being informed about,” he says.
But there is only so much doctors can do to take the initiative.
Dr Dignam recalls a patient, Joan, 85, who came in for a general check-up. Her husband, Brian, 87, was close to complete visual impairment and totally dependent on her. However, Joan had coronary heart disease and dementia. The latter condition had been deteriorating in the past year and her driver’s licence was due for renewal.
“When Joan came in to discuss her licence, I also raised the importance of preparing an advance health directive, particularly in relation to an emergency such as a heart attack,” Dr Dignam says.
The patient responded: “This isn’t the time for that now. My blood pressure is fine — you just told me so yourself.”
Dr Dignam didn’t push Joan any further on the issue. She realised she would have to wait for another time to deal with the difficult issue of preparing an advance health directive for life-saving emergency treatment.
Right to refuse
A RECENT ruling by the Victorian Supreme Court has made it clear that patients have a right to refuse medical treatment.
The court ruled that artificial nutrition and hydration can be withdrawn from a terminally ill woman with a rare form of dementia. Justice Stuart Morris ruled that the provision of nutrition and hydration by a stomach tube constituted medical treatment under the Victorian Medical Treatment Act and could be refused.
The Victorian Public Advocate, Julian Gardner, who was appointed the woman’s legal guardian, had applied for removal of the feeding tube. The 68-year-old woman had Pick’s disease and had not communicated for three years. Medical experts told the court she had no prospects of recovery.
The woman had made her views and wishes about medical treatment clear while she was competent.
After the judgment Mr Gardner said the decision related “to people who made their wishes known while they were competent and if those wishes were not made known or they didn’t ever have any wishes, then … I would fight to continue to get the medical treatment”.
AAP
Preparing advance health directives
THE following recommendations are aimed at assisting doctors when advising patients on preparing an advance health directive for life-saving emergency treatments:
n Ensure patients are expressing their wishes and are fully informed about decisions, particularly clearing up misunderstandings of the nature of life-saving treatments and their end results.
n Allow the patient as much time as possible to consider the decision, including arranging additional appointments.
n Encourage the patient to discuss the decision as fully as possible with family and friends.
n Decisions should be about specific situations rather than simply recording a general statement such as “do not resuscitate”. A good example is: “If I am aged 90 years or over and found unconscious at home, do not call an ambulance.”
n A copy of the advance health directive should be held in the patient’s medical file and this should be clearly indicated.
n A description of discussions held with the patient and/or family should be included in the notes.
n If a decision has been made not to include others such as family in decisions made when the patient is incompetent, an explanation should be provided in the notes.
n Review the decision when the patient’s health changes significantly and at regular intervals, such as once a year, if there is no change.
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