Straight talking part of the cure

By MARTIN JOHNSTON

The woman came to Auckland Hospital with suspected meningococcal meningitis, an illness known for the speed with which it kills.

She insisted she had the disease and told the doctors the name of the person she had caught it from.

The woman complained of a stiff neck, one of the classic symptoms, but the doctors found her neck was not stiff.

They examined her and ran tests but were not convinced she had the disease - which can be difficult to diagnose - so they did not do a lumbar puncture to check spinal fluid.

Her condition improved and they sent her home, but she deteriorated and the next day returned to hospital. A day later, she died from meningococcal meningitis.

A coroner investigated the 1996 death and did not criticise the doctors, although she declined to rule on many of the family's concerns.

Dr Lannes Johnson, a West Auckland GP who gave evidence for the family at the inquest, cites the case as an example of a tragic miscommunication between patient and doctor, one that shows how hard it can be to get the message across in medical rooms.

"Most of the complaints made against hospitals or medical staff have their origins in misunderstandings," he says.

Patients have to be listened to, under the code of health consumers' rights, which also states they can be treated only if they have given informed consent. To be able to give that consent, the code entitles patients to details from health workers on their condition, options available, risks, benefits and costs of each option, and any waiting time.

Public concern has flared over medical misadventure, with several high-profile cases affecting many people. But the rights of those harmed to sue remain tightly constrained under our no-fault accident compensation system.

The Cartwright inquiry in the late 1980s into an "unfortunate experiment" in cervical cancer therapy at National Women's Hospital was a watershed for patients' rights over their treatment.

Yet parents of premature babies given chest physiotherapy at National Women's in 1993 and 1994 were not asked for their consent to the treatment.

The "chest-tapping" was later linked to brain damage in 13 babies, five of whom died, and led to an inquiry last year.

One of the Ministry of Health's responses to that inquiry's findings was to set up a working party of health staff and consumers to study informed consent in neonatal intensive care units (Nicus). It has produced its second draft of recommendations.

Dr Pat Tuohy, the ministry's chief adviser, child and youth, says the draft includes innovative ways of handling informed consent for the treatment of premature babies, which must be obtained from parents or caregivers, except in emergencies.

"You can go through it with them as soon as possible afterwards. Some of that might be anticipated ... You could say beforehand, 'Sometimes there are things that go wrong because the baby's so premature and the treatment is quite intensive. In that case, what we do is this.'

"I think clinicians are much more informed about consent than they were in 1994."

But patient advocates are not convinced of a universal improvement among doctors and other health workers.

"It's extremely variable," says Sandra Coney, executive director of Women's Health Action.

"Some people have improved their practices vastly and I think some people are making very heavy weather of it," she says, pointing to the ministry's work on neonatal consent.

"Now it's gone to this working party they are finding they are having to justify why you should get informed consent in a Nicu. It's gone right back to why you should be getting it rather than how you get it."

She says that because the Cartwright inquiry focused on gynaecology, healthcare has probably improved a lot for women. But she believes that in other areas of patient consent a lot of work still needs to be done.

Surgery patients have to give three written consents at some hospitals - for anaesthesia, surgery and blood transfusions. The anaesthetic one alone can take up to 30 minutes for major surgery as the specialist explains risks and benefits and answers questions.

Women giving birth can have to give consent to an emergency caesarean, gasping for anaesthetic gas, vomiting into a pottle, while the obstetrician tries calmly to explain the operation.

Dr David Knight, National Women's clinical director of newborn services, expects the ministry working party will want hospitals to give more information to parents - an extension of what is already happening rather than any drastic change.

Neonatal units obtain consent for surgery and some other procedures, but not for using a breathing ventilator, which is usually a matter of life or death.

Dr Knight says ventilation is discussed with parents if they are present, "and I think that discussion would fulfil the requirements of informed consent."

Blanket consents, obtained on admission, are used at neonatal units in five American states, he says, but are not considered acceptable in New Zealand.

Lynda Williams, of the Auckland Women's Health Council, says she still sees too many cases where doctors do not explain all the treatment options and possible side-effects and that this predisposes patients to accepting treatments they may otherwise reject.

But can GPs be expected to tell all in a 15-minute consultation?

"It's well within their powers to explain what all the options are," says Lynda Williams.

Medical students now have informed consent hammered into them. Professor Gregor Coster, of the Auckland Medical School, says consent is regarded as very important and is taught in undergraduate and post-graduate courses.

Actors are employed to explain, during communications sections of courses, how to obtain informed consent appropriately.

The patient must be "clothed, sitting upright and not disadvantaged in any way; and if they want their whanau with them, then go for it."

The aim is "to enable the patient. It's about two people having an equal standing."

With informed consent a legal obligation, Professor Coster warns his students: "Woe betide anybody who embarks on a procedure without a due and proper explanation" to the patient.

The consumers' code of rights talks about the right to be given information that "a reasonable consumer" would expect.

Sandra Coney: "People want to know about relatively common side-effects but also really serious ones that are uncommon.

"It doesn't have to be a big deal and it beats doctors making decisions for patients."

Dr Johnson, chairman of the GPs' group Integrated Primary Care Services and a Waitemata Health board member, highlights a dilemma of informed consent.

He wants to start a very sick patient on a new drug but knows that if he lists every known side-effect the patient may consider it too dangerous. Without the drug, he or she may die of a heart attack.

The problem solves itself because "in practical terms there is not enough time" to exhaust the list in a single session.

Speeding through it but in a way the patient may not understand is unethical, says Dr Johnson.

Health professionals should talk in plain language and a culturally appropriate way that "allows the patient to understand and from understanding to make the decision that they need to."

"You would normally say, 'There are lots of possible allergic rashes and things that can happen but they are pretty rare. If you are uncertain of anything, come back.'

"You only really highlight the major things," such as that a cholesterol-lowering drug can cause depression, or that an Ace inhibitor for blood pressure can make some people develop a cough.

"You're duty-bound to highlight the essential things about the procedure or the drug and make sure they have understood it," says Dr Johnson.

But he adds that patients' medical comprehension varies enormously.

YOUR RIGHTS


The Code of Health and Disability Services Consumers' Rights applies to all health or disability services, whether you pay for them or not.

Every patient is entitled to:

1 RESPECT: You should always be treated with respect. This includes respect for your culture, values and beliefs, as well as your right to personal privacy.

2 FAIR TREATMENT: No one should discriminate against you, pressure you into something you do not want, or take advantage of you in any way.

3 DIGNITY and INDEPENDENCE: Services should support you to live a dignified, independent life.

4 PROPER STANDARDS: You have the right to be treated with care and skill, and to receive services that reflect your needs. All those involved in your care should work together for you.

5 COMMUNICATION: You have the right to be listened to and understood, and to receive information in whatever way you need. When it is necessary and practicable, an interpreter should be available.

6 INFORMATION: You have the right to have your condition explained and be told what your choices are. This includes how long you may have to wait, an estimate of any costs and likely risks, benefits and side-effects. You can ask any questions to help you be fully informed.

7 IT'S YOUR DECISION: It is up to you to decide. You can say no or change your mind at any time.

8 SUPPORT: You have the right to have someone with you to give you support in most circumstances.

9 TEACHING and RESEARCH: All these rights also apply when taking part in teaching and research.

10 COMPLAINTS: It is not wrong to complain - complaints help to improve service. It must be easy for you to make a complaint, and it should not have an adverse effect on the way you are treated.