Concerns of some patients

10. Although many patients are quite satisfied with their relationship with their doctors, some think that they are not always allowed to participate sufficiently in deciding about their treatment or given enough information to enable them to do so. These concerns are evident in the findings of the Victorian Commission’s studies of patients’ experiences and attitudes.¹ The findings of those studies accord with those of extensive surveys conducted for the United States President’s Commission in 1982² and with the views put by patient groups in meetings with the Victorian and New South Wales Law Reform Commissions.

11. Other inquiries in Australia have also found evidence of communication problems between doctors and patients:

• The Social Development Committee of the Victorian Parliament, investigating the need for a health complaints service in 1984, conducted 823 interviews during a 3-day Health Services Complaints Phone-in. Thirteen percent of the callers complained about poor communication and 27% about the poor attitude or behaviour of health care providers. Thirty five percent of the total complaints were against institutions such as hospitals and 30% against individual doctors.³
• The Victorian Health Complaints Advisory Link Line (Health CALL), was established as a pilot project to monitor health complaints following the Social Development Committee’s Report. In 1986/87 it recorded 495 complaints about aspects of communication out of a total of 2,617 complaints in that year. One hundred and eighty complaints about communication related to doctors and 162 to hospitals. In 1987/88 there were 697 complaints about communication in a total of 2,813; 294 related to doctors and 155 to hospitals.⁴
• The Office of Health Services Commissioner in Victoria was established following the Social Development Committee’s Report. In its first year of operation from March 1988 to March 1989) 142 complaints about communication were reported in a total of 1,172 statutory complaints. The Commissioner is of the opinion that some failure of communication or expectation is the basis for at least 80% of the 2,500 inquiries from which the statutory complaints are derived. Many of these initial inquiries were resolved when people were given an explanation in terms they could understand.⁵
• The Health Complaints Unit of the New South Wales Department of Health reported 1,927 complaints in 1987, of which 64 specifically concerned failure to communicate or misleading information. In 1988, under new coding, 83 complaints about communication were reported in a total of 1,084 complaints. The Director of the Health Complaints Unit reported that a very large proportion of complaints were resolved when more information was given to complainants, suggesting that a lack of communication was a factor in many more complaints than the figures show.⁶ This also demonstrates the role that fuller information between doctors and patients can have in preventing disputes arising.
• The Women’s Health Policy Working Party, Victoria, reported in 1987 that the most frequent single concern it heard was that doctors did not communicate adequately with women patients. One of the Working Party’s major findings was that doctors often failed to provide adequate information about health issues.⁷
• The Commonwealth Medical Education Inquiry in 1988 reported that submissions received from consumer and community groups ‘shared basic concerns regarding competencies seen as central to medical practice, such as communication skills, counselling skills ... [the] ability to recognise patients as people with the right to make decisions about their own care, and sensitivity to the diversity of the views and interests of patients’.⁸
• The Royal Women Is Hospital Study in 1988 reported that 69% of the patients studied said that they were not given enough information about their treatment or care and 77% said that they wanted more information. Particular concerns were for more information before consenting to treatment and before being examined by students.⁹

• Several District Health Councils in Victoria met patients specifically to discuss doctor/patient communication. They heard many accounts of communication problems.¹¹
• Several nurses wrote, both generally and specifically, of their experiences and observations. They said that patients are often not given information, or ‘quality’ information, or ‘comprehended’ information.¹² This created problems, not only for patients but also for other health carers, such as nurses or aides, who were then uncertain of their role and legal position.
• Some patients described cases in which they may have been given insufficient information. For example, a patient was prescribed Timoptol eye drops for glaucoma. She said that she became depressed when she used the medication. The depression was relieved when the patient complained to the doctor who then changed the medication saying it was a known possible side-effect. She said: ‘To me it is immoral and should be illegal for a patient to be prescribed a medication that has been known in some cases to cause depression, unless given the full facts. Especially when there is other treatment available. Informed consent should be a patient’s right’.¹³
• A number of patient support groups and organisations which act as an information resource for patients said that their experiences indicated that many patients who had chronic illnesses were often not given enough information. This problem was exacerbated by the patients’ developing understanding of their condition and their need for more specific information about procedures and alternatives.¹⁴

Doctors’ views

13. Doctors’ views were widely canvassed during the consultation process. A series of meetings was held by the Victorian and New South Wales Commissions with representatives of professional bodies and specialist colleges (Appendix 3). Also, many submissions were received from general practitioners, specialists and medical organisations (Appendix 4). Some doctors have apparently not yet accepted that patients should be given enough information to decide for themselves what treatment they will undertake. These doctors believe that they should choose the most appropriate treatment for the patient and then simply present the patient with the choice whether to have it.

14. Most doctors acknowledge the importance of giving patients information so they can make informed decisions. However, many of them are concerned about the practical difficulties associated with providing the relevant information to patients with widely differing characteristics in a variety of different situations. In some cases -for example, in an emergency - it is simply not possible to give the relevant information. In some cases, there may be a risk that providing the information would harm the patient’s health or welfare. Some patients may simply not want to be told about the potential risks of treatment, preferring to leave the decision entirely to the doctor. There are considerable variations in the practices of different doctors in giving information, even in similar cases. They place different emphases on factors that might influence how much information they should give in a particular case, such as whether the information might dissuade the patient from undertaking the recommended treatment, or whether the information might itself worsen the patient’s medical condition. The variations in doctors’ practices and the concerns felt by some doctors were revealed by:

• consultations with and submissions received from doctors and medical organisations;¹⁵
• a survey of doctors conducted by the Victorian Commission;¹⁶ and
• direct observations of clinical consultations by a research officer of the Victorian Commission.¹⁷

15. The points made by doctors and medical organisations included the following:

• communication is a vital part of medical practice;
• there are areas in which communication could be improved;
• the task of trying to improve communication is most important;
• there is a growing demand from patients for better and fuller information; and
• the inquiries and consultations leading to this report have already had a significant impact in promoting discussion and in changing medical practice.

16. A few medical submissions provided examples of cases in which sufficient information had not been given. One specialist said that he had encountered many patients who had undergone operations and procedures ‘without any effort having been made to apprise them of what was entailed’.¹⁸ Another specialist said that information-giving is a significant and widespread problem, particularly in public hospitals where it is often delegated to junior medical staff.¹⁹ The Doctors’ Reform Society also said that cases came to members’ notice where patients had not been adequately informed and this aspect of doctors’ service needed to improve.²⁰

17. Many of the medical submissions, however, expressed the view that the current law and practice is quite satisfactory and that patients are generally satisfied with the information they are given.²¹ They emphasised the need for doctors to retain a discretion in relation to information-giving and questioned whether it is possible, or even desirable, to state general requirements.²²

1. Law Reform Commission of Victoria, Informed Decisions about Medical Procedures: Doctor and Patient Studies, 1989.

2. President’s Commission for the Study of Ethical Problems, Making Health Care Decisions, Vol 2: Empirical Studies of Informed Consent, USGPO, 1982.

3. Social Development Committee, Final Report upon Complaints Procedures against Health Services, VGPO, 1984.

4. Health Complaints Advisory Link Line Annual Reports, 1986-87, 1987/88.

5. Communication from the Commissioner for Health Services.

6. New South Wales Law Reform Commission consultation with the Health Complaints Unit. The 1987 Annual Report notes an escalation of patient complaints centring on:

• perceived inadequate communication skills on the part of the medical practitioner;
• the failure of the medical practitioner to disclose information to patients;
• the failure of the medical practitioner to allow patients to participate in the decision making process about their treatment;
• the failure of the medical practitioner to obtain proper consent for treatment from patients.

8. Committee of Inquiry into Medical Education and the Medical Workforce, Australian Medical Education and Workforce into the 21st Century, AGPS, 1988, 50.

9. Royal Women’s Hospital, Our Health, Our Hospital: Victorian Women talk with Our Hospital, 1988.

10. Submissions from patients, patient organisations and the general community are listed in Appendix 4.

11. Submissions: Keysborough Women’s Group, Dandenong and Springvale District Health Councils, Southport Community Health Centre.

12. Submissions: Ms M J Johnstone; Ms T Mercovich; Ms P Pickert.

13. Submission: Mrs Sheppee.

14. Cancer Support Groups (Frankston & Ballarat); Endometriosis Association; Women in Industry Contraception and Health; Council of Self-Help Groups; Australian Huntington’s Disease Association (NSW); Women’s Health Information Resource Collective; Australian Consumers’ Association (NSW), Consumers’ Health Forum of Australia (ACT), Health Issues Centre (Vic), Chronic Pain Association, Arthritic Women’s Task Force (Vic), Maternity Alliance (NSW), Back Pain Association (Vic), Handicapped Citizens’ Association (ACT), AIDS Council of NSW.

15. These consultations and submissions are listed in Appendices 3 and 4.

16. Law Reform Commission of Victoria, Informed Decisions about Medical Procedures: Doctor and Patient Studies: 1989.

17. Consultative sessions of three general practitioners and three specialists seeing 46 patients were observed. See Law Reform Commission of Victoria, Informed Decisions about Medical Procedures: Doctor and Patient Studies, 1989.

18. Submission: Dr T Sandeman, Radiation Oncologist, Melbourne.

19. Submission: Squadron Leader Patten, RAAF Base, Laverton, Victoria.

20. Victorian Law Reform Commission consultation.

21. Submissions: Australian Society of Anaesthetists; Australian Association of Surgeons, Victorian Committee; Medical Advisory Committee, Royal Southern Memorial Hospital; Medical Advisory Committee, Amalgamated Melbourne and Essendon Hospitals; Dr M Jelinek, Cardiac Physician.

22. Submissions: Dr P Nisselle, General Practitioner; Mr Peter Field, Surgeon; Dr W Jame, General Practitioner; Dr J Bolton, Physician.