Women's Health Action - Patients' rights and ethics

Patients' rights - general

Pharmaceutical funding for patient advocacy groups - WHW June 2006
Submission on Discussion Document: HIV Screening in Pregnancy - January 2004
Submission on Current Revised Draft Standard on Informed Consent, Medical Council of New Zealand, 2001
Patients' rights in the private health system (report of the case of medical injury in the private sector, and discussion of few avenues for redress), WHW Dec 1992
Teaching medical students to perform pelvic exams (report of a pilot scheme to teach) pelvic exams to medical students using gynaecological training associates), WHW Dec 1992

Patients rights in the private health

Earlier this year Fertility Action was contacted by a woman we shall call "Jenny". Her story was a tragic example of how the general assumption that the private health sector offers a better service, adherence to informed consent principles and access to more or better information may be misplaced.

For more than five years Jenny had suffered from excessive bleeding with her periods. A D & C (dilatation and curretage) at National Women's Hospital three years ago didn't help much, and so National Women's booked Jenny for a hysterectomy. After thinking it through, Jenny cancelled the operation as she felt it was a very drastic solution to her problem and she also could not afford the two to three months' leave this surgery would entail. She then tried hormone therapy, but this didn't help much either.

Endometrial resection
In the middle of 1991 Jenny happened to hear about a new procedure called endometrial resection, which involves completely removing the uterine lining but leaving the uterus intact. As this procedure does not involve more than a few days in hospital and a week or so convalescing, Jenny was interested. So the next time she went to her GP she mentioned it to her.

Her GP didn't know much about it, but she had recently received some information from two gynaecologists working in partnership about the availability of this new procedure. The GP gained the impression from the information sent to her by the two gynaecologists that the procedure was only available in the private health system. She phoned their surgery on Jenny's behalf to find out how much the operation would cost and was told $2500. Jenny thought about it and decided that it was worth it. She wouldn't have to take so much time off work and she got to keep her womb.

The G.P. then referred her to their practice and Jenny was seen by Dr A. She advised Dr A. at the initial appointment that she didn't have private medical insurance, but no mention was made of the fact that she could have an endometrial resection for free at National Women's Hospital in the public health system. Dr A. also neglected to mention that whilst his partner, Dr B. was relatively experienced in performing the procedure, he was not. In fact, Dr A. had never done the procedure before.

Jenny recalls him explaining the technical details about what endometrial resection involved, and advising her to have more hormonal treatment. She followed his advice and had two months on hormones and then went back to him in January 1992 and told him that the hormones hadn't made any difference.

She asked for an endometrial resection and Dr A's response was to attempt to dissuade her, suggesting she have a hysterectomy instead. Jenny thought it through again aware that she could save herself $2500 by having a hysterectomy at National Women's Hospital. During the consultation, Jenny was told that she would need five weeks of hormone treatment prior to the endometrial resection, and that she should consider the hysterectomy option. But Jenny persisted, pointing out that she thought "it was overkill" and that she couldn't afford the 6 weeks or more off work.

What she wasn't told
Knowing what she knows now, Jenny believes that she should have been told during this consultation that she could have an endometrial resection in National Women's Hospital, and that Dr A. had not done this operation before. Instead, Dr A. tried to discourage her from having this relatively new procedure done, and Jenny became unsure as to whether this was right for her after all.

During the next few weeks she thought very carefully about it and talked further to her G.P. She then phoned Dr A's surgery and asked if she could have the endometrial resection the week before Easter. She explained that she had been told she would need five weeks of hormonal treatment prior to the operation. She had to phone back twice with this information and in the end was on Danazol, the hormone usually given in the weeks before undergoing endometrial resection, for only 22 days.

Jenny saw Dr A. again a few days before the operation. He told her then that his partner, Dr B, would be coming into the theatre with him to perform the laparoscopy. No mention was made of the fact that this would be Dr A's first time doing this procedure and Dr B. was there to supervise him.

Lack of written information
Nor was Jenny given any written information about the operation, such as the patient information sheets that are freely available and given out at National Women's Hospital. She was also not scanned for the possibility of fibroids, something she was later to be assured would have happened if she had been having the operation done at NWH. These apparent oversights almost cost Jenny her life.

On Wednesday 15 April Jenny checked into a small private hospital. Dr B. visited her for the first time, and asked her if she would like a tubal ligation at the same time as the endometrial resection. Jenny was astounded that she should be given this choice two hours before surgery with no, opportunity to think it through or discuss it with her family. Dr B. was very positive and Jenny now believes that he assumed she knew why he was there. She was also seen by the anaesthetist.

Problems during surgery
After a two hour delay, the operation was begun at 6 p.m. Problems occurred almost immediately. A large fibroid was hE discovered at the entrance to the uterus. Dr B. then took over from Dr A. About five minutes before the completion of the operation, Jenny began haemorrhaging. Dr B. had perforated the uterine wall and severed a major uterine artery. The anaesthetist was to tell her later that he saw her stomach rise as it filled up with blood. A hysterectomy was quickly performed.

Jenny's husband arrived at the hospital somewhere in the middle of all this and around 10pm was taken into a side room where it was explained that problems had occurred during surgery and that Jenny had required a blood transfusion and would need to be transferred to critical care in Auckland Hospital. Jenny subsequently learned in querying her account from the hospital because it included three taxi fares, that the hospital did not have blood on the premises and that there had been a delay of about an hour while several units of blood were taxied to the hospital. All in all Jenny received 8 units of blood. Her temperature dropped as a result of the blood still being cold and she then required careful observation in a critical care unit.

The following day it was suggested she transfer back to the private hospital. Jenny balked at this and asked if she could go to NWH. She was then transferred to NWH as Dr B's patient. During the following days in the gynaecology ward at Green Lane/National Women's Hospital Jenny discovered that:

she could have had the procedure done for free at NWH,
she should have had a scan,
she had not been told that Dr A. hadn't done the procedure before,
she was getting conflicting information about why the hysterectomy was done,
the private hospital does not have blood on hand because nit would be too expensive",
written information is available in the public health system about this new procedure.

Jenny's story raises a number of very important issues and demonstrates some real problems with private health care and the lack of observance of basic patient rights, rights that are now being attended to in the public system.

Firstly, the events outlined above show a failure to observe even the basic principles of informed consent. At NWH Jenny would have been given both verbal and written information about the procedure, information that included side effects of the drugs she would be taking in the weeks leading up to her operation, how the procedure would be performed, and the level of experience of the operating surgeon.

Secondly, there is the lack of redress open to those who find that their treatment or care does not measure up. If Jenny had experienced a similar saga of events in the public health system, she could have taken her concerns to the patient advocate, made a formal complaint to hospital management, or to the Area Health Board. She would also have guaranteed access to her medical records, a right that does not exist as completely in the private system.

Thirdly, Jenny's experience reveals the real need for a Health Commissioner who would be able to investigate the complaints she has about both the doctor involved and the care she received, and thus provide an avenue of complaint for those who opt to have their surgery or medical treatment in the private health system.

The only option Jenny has at present is to take her complaint to the Medical Practitioners' Disciplinary Committee (MPDC). This usually requires a considerable amount time and energy from the person with the complaint and a willingness to undergo the lengthy MPDC process which can take a year or two before the complaint is heard and a verdict reached. Unlike Jenny, most people cannot cope with such extreme delays in obtaining the only redress open to them.

Teaching medical students to perform pelvic

An article that appeared in the 5 November issue of NZ Doctor reveals that an Auckland pilot scheme is underway in which four women who have all been involved in medical education are acting as Gynaecology Training Associates (GTAs). The women act as both teacher and surrogate patient for Auckland medical school students learning how to perform pelvic examinations.

During the Cartwright Inquiry it was revealed that medical school students often practised doing pelvic examinations on anaesthetised women who were unaware of what was happening and whose consent to being used as teaching material in this manner had not been sought. Women's health groups were unanimous in their opposition to the practice and in Auckland a number of women's groups spent a considerable amount of time and energy in drawing up a proposal that would see the use of paid GTAs being an integral part of a unit on women's health within the medical school training programme for medical students.

However, the proposal put forward by the Auckland Women's Health Council was never taken up. The Council was eventually told that the scheme was too expensive.

Upon her appointment to the position of senior lecturer in women's health at the Auckland Medical School, Dr Helen Roberts decided to implement the basic idea contained in the Auckland Women's Health Council's proposal.

According to the article, the four female instructors involved in the pilot GTA scheme are women with a commitment to improving women's health and the education of both male and female medical students. They are assertive and comfortable with their own sexuality and trained to give constructive criticism and feedback to students.

Dr Roberts is reported as saying, 'For students it is an extension of communication skill training m an area where it's particularly important to have the correct attitude and communication skills.'

Members of the Auckland Women's Health Council have maintained an interest in the scheme, as they are still keen to see the implementation of the rest of the original proposal. Meetings are held from time to time with Dr Roberts and members of the Family Planning Association as part of the Council's continuing role of monitoring further developments of the scheme.

According to Dr Roberts, it is not intended that any extension of the GTA pilot scheme will serve to replace traditional training, but will continue to complement it. The future of the scheme will also depend on how well the pilot stands up to evaluation and costing, although student comments thus far indicate that they find it useful before starting obstetrics and gynaecology ward duties.

A comparison of the pilot group with another 24 students receiving only traditional training will be undertaken, and will consist of evaluations from the women they examine, the students themselves and the clinical tutors.

Ref: NZ Doctor, November 5,1992

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	Patients' rights - general Pharmaceutical funding for patient advocacy groups - WHW June 2006 Submission on Discussion Document: HIV Screening in Pregnancy - January 2004 Submission on Current Revised Draft Standard on Informed Consent, Medical Council of New Zealand, 2001 Patients' rights in the private health system (report of the case of medical injury in the private sector, and discussion of few avenues for redress), WHW Dec 1992 Teaching medical students to perform pelvic exams (report of a pilot scheme to teach) pelvic exams to medical students using gynaecological training associates), WHW Dec 1992 back to top Patients rights in the private health Earlier this year Fertility Action was contacted by a woman we shall call "Jenny". Her story was a tragic example of how the general assumption that the private health sector offers a better service, adherence to informed consent principles and access to more or better information may be misplaced. For more than five years Jenny had suffered from excessive bleeding with her periods. A D & C (dilatation and curretage) at National Women's Hospital three years ago didn't help much, and so National Women's booked Jenny for a hysterectomy. After thinking it through, Jenny cancelled the operation as she felt it was a very drastic solution to her problem and she also could not afford the two to three months' leave this surgery would entail. She then tried hormone therapy, but this didn't help much either. Endometrial resection In the middle of 1991 Jenny happened to hear about a new procedure called endometrial resection, which involves completely removing the uterine lining but leaving the uterus intact. As this procedure does not involve more than a few days in hospital and a week or so convalescing, Jenny was interested. So the next time she went to her GP she mentioned it to her. Her GP didn't know much about it, but she had recently received some information from two gynaecologists working in partnership about the availability of this new procedure. The GP gained the impression from the information sent to her by the two gynaecologists that the procedure was only available in the private health system. She phoned their surgery on Jenny's behalf to find out how much the operation would cost and was told $2500. Jenny thought about it and decided that it was worth it. She wouldn't have to take so much time off work and she got to keep her womb. The G.P. then referred her to their practice and Jenny was seen by Dr A. She advised Dr A. at the initial appointment that she didn't have private medical insurance, but no mention was made of the fact that she could have an endometrial resection for free at National Women's Hospital in the public health system. Dr A. also neglected to mention that whilst his partner, Dr B. was relatively experienced in performing the procedure, he was not. In fact, Dr A. had never done the procedure before. Jenny recalls him explaining the technical details about what endometrial resection involved, and advising her to have more hormonal treatment. She followed his advice and had two months on hormones and then went back to him in January 1992 and told him that the hormones hadn't made any difference. She asked for an endometrial resection and Dr A's response was to attempt to dissuade her, suggesting she have a hysterectomy instead. Jenny thought it through again aware that she could save herself $2500 by having a hysterectomy at National Women's Hospital. During the consultation, Jenny was told that she would need five weeks of hormone treatment prior to the endometrial resection, and that she should consider the hysterectomy option. But Jenny persisted, pointing out that she thought "it was overkill" and that she couldn't afford the 6 weeks or more off work. What she wasn't told Knowing what she knows now, Jenny believes that she should have been told during this consultation that she could have an endometrial resection in National Women's Hospital, and that Dr A. had not done this operation before. Instead, Dr A. tried to discourage her from having this relatively new procedure done, and Jenny became unsure as to whether this was right for her after all. During the next few weeks she thought very carefully about it and talked further to her G.P. She then phoned Dr A's surgery and asked if she could have the endometrial resection the week before Easter. She explained that she had been told she would need five weeks of hormonal treatment prior to the operation. She had to phone back twice with this information and in the end was on Danazol, the hormone usually given in the weeks before undergoing endometrial resection, for only 22 days. Jenny saw Dr A. again a few days before the operation. He told her then that his partner, Dr B, would be coming into the theatre with him to perform the laparoscopy. No mention was made of the fact that this would be Dr A's first time doing this procedure and Dr B. was there to supervise him. Lack of written information Nor was Jenny given any written information about the operation, such as the patient information sheets that are freely available and given out at National Women's Hospital. She was also not scanned for the possibility of fibroids, something she was later to be assured would have happened if she had been having the operation done at NWH. These apparent oversights almost cost Jenny her life. On Wednesday 15 April Jenny checked into a small private hospital. Dr B. visited her for the first time, and asked her if she would like a tubal ligation at the same time as the endometrial resection. Jenny was astounded that she should be given this choice two hours before surgery with no, opportunity to think it through or discuss it with her family. Dr B. was very positive and Jenny now believes that he assumed she knew why he was there. She was also seen by the anaesthetist. Problems during surgery After a two hour delay, the operation was begun at 6 p.m. Problems occurred almost immediately. A large fibroid was hE discovered at the entrance to the uterus. Dr B. then took over from Dr A. About five minutes before the completion of the operation, Jenny began haemorrhaging. Dr B. had perforated the uterine wall and severed a major uterine artery. The anaesthetist was to tell her later that he saw her stomach rise as it filled up with blood. A hysterectomy was quickly performed. Jenny's husband arrived at the hospital somewhere in the middle of all this and around 10pm was taken into a side room where it was explained that problems had occurred during surgery and that Jenny had required a blood transfusion and would need to be transferred to critical care in Auckland Hospital. Jenny subsequently learned in querying her account from the hospital because it included three taxi fares, that the hospital did not have blood on the premises and that there had been a delay of about an hour while several units of blood were taxied to the hospital. All in all Jenny received 8 units of blood. Her temperature dropped as a result of the blood still being cold and she then required careful observation in a critical care unit. The following day it was suggested she transfer back to the private hospital. Jenny balked at this and asked if she could go to NWH. She was then transferred to NWH as Dr B's patient. During the following days in the gynaecology ward at Green Lane/National Women's Hospital Jenny discovered that: she could have had the procedure done for free at NWH, she should have had a scan, she had not been told that Dr A. hadn't done the procedure before, she was getting conflicting information about why the hysterectomy was done, the private hospital does not have blood on hand because nit would be too expensive", written information is available in the public health system about this new procedure. Jenny's story raises a number of very important issues and demonstrates some real problems with private health care and the lack of observance of basic patient rights, rights that are now being attended to in the public system. Firstly, the events outlined above show a failure to observe even the basic principles of informed consent. At NWH Jenny would have been given both verbal and written information about the procedure, information that included side effects of the drugs she would be taking in the weeks leading up to her operation, how the procedure would be performed, and the level of experience of the operating surgeon. Secondly, there is the lack of redress open to those who find that their treatment or care does not measure up. If Jenny had experienced a similar saga of events in the public health system, she could have taken her concerns to the patient advocate, made a formal complaint to hospital management, or to the Area Health Board. She would also have guaranteed access to her medical records, a right that does not exist as completely in the private system. Thirdly, Jenny's experience reveals the real need for a Health Commissioner who would be able to investigate the complaints she has about both the doctor involved and the care she received, and thus provide an avenue of complaint for those who opt to have their surgery or medical treatment in the private health system. The only option Jenny has at present is to take her complaint to the Medical Practitioners' Disciplinary Committee (MPDC). This usually requires a considerable amount time and energy from the person with the complaint and a willingness to undergo the lengthy MPDC process which can take a year or two before the complaint is heard and a verdict reached. Unlike Jenny, most people cannot cope with such extreme delays in obtaining the only redress open to them. Teaching medical students to perform pelvic An article that appeared in the 5 November issue of NZ Doctor reveals that an Auckland pilot scheme is underway in which four women who have all been involved in medical education are acting as Gynaecology Training Associates (GTAs). The women act as both teacher and surrogate patient for Auckland medical school students learning how to perform pelvic examinations. During the Cartwright Inquiry it was revealed that medical school students often practised doing pelvic examinations on anaesthetised women who were unaware of what was happening and whose consent to being used as teaching material in this manner had not been sought. Women's health groups were unanimous in their opposition to the practice and in Auckland a number of women's groups spent a considerable amount of time and energy in drawing up a proposal that would see the use of paid GTAs being an integral part of a unit on women's health within the medical school training programme for medical students. However, the proposal put forward by the Auckland Women's Health Council was never taken up. The Council was eventually told that the scheme was too expensive. Upon her appointment to the position of senior lecturer in women's health at the Auckland Medical School, Dr Helen Roberts decided to implement the basic idea contained in the Auckland Women's Health Council's proposal. According to the article, the four female instructors involved in the pilot GTA scheme are women with a commitment to improving women's health and the education of both male and female medical students. They are assertive and comfortable with their own sexuality and trained to give constructive criticism and feedback to students. Dr Roberts is reported as saying, 'For students it is an extension of communication skill training m an area where it's particularly important to have the correct attitude and communication skills.' Members of the Auckland Women's Health Council have maintained an interest in the scheme, as they are still keen to see the implementation of the rest of the original proposal. Meetings are held from time to time with Dr Roberts and members of the Family Planning Association as part of the Council's continuing role of monitoring further developments of the scheme. According to Dr Roberts, it is not intended that any extension of the GTA pilot scheme will serve to replace traditional training, but will continue to complement it. The future of the scheme will also depend on how well the pilot stands up to evaluation and costing, although student comments thus far indicate that they find it useful before starting obstetrics and gynaecology ward duties. A comparison of the pilot group with another 24 students receiving only traditional training will be undertaken, and will consist of evaluations from the women they examine, the students themselves and the clinical tutors. Ref: NZ Doctor, November 5,1992 back to top