Names have been removed to protect privacy. Identifying letters are assigned in alphabetical order and bear no relationship to the person's actual name.
Neurosurgeon, Dr B
Radiation Oncologist, Dr C
A Report by the Health and Disability Commissioner
Dr A Complainant / Consumer
Mrs A Complainant / Consumer's wife
Dr B Provider / Neurosurgeon
Dr C Provider / Radiation Oncologist
Dr D Specialist in Emergency Medicine
Dr E Overseas surgeon
On 4 December 2002 the Commissioner received a complaint from Dr A regarding the care he received from Dr B and Dr C following diagnosis of a brain tumour in April 2001. The complaint was summarised as follows:
- In May 2001 Dr B failed to inform Dr A of the option of surgery, specifically tumour resection, including its expected benefits, to treat his advanced brain cancer.
- In May 2001 Dr C failed to inform Dr A of the option of surgery, specifically tumour resection, including its expected benefits, to treat his advanced brain cancer.
An investigation was commenced on 3 April 2003.
- Information obtained from Dr and Mrs A, Dr B, and Dr C
- Dr A's records from Dr D, and the private and local public hospitals
Information gathered during investigation
On 24 April 2001 Dr A suffered a convulsion with loss of consciousness during a regular lunchtime run. This was preceded by a four-week history of urgency of defecation and passing urine, and a two-week history of "veering" to the right when walking or driving. He was taken by ambulance to a local public hospital where a CT scan of his head showed a right frontal mass.
Dr A was discharged from the hospital later that day with a referral to Dr B, a neurosurgeon. The referral was made by Dr D, a specialist in emergency medicine at the local hospital's Emergency Department who also worked as a general practitioner in private practice. Dr B arranged to see Dr A on Friday 27 April.
On 27 April Dr A had an MRI scan at a radiology clinic, arranged by Dr B. The MRI showed a single 3cm mass in the posterior right frontal area of the brain. The differential diagnosis on the MRI was that of a primary glioma or a secondary (metastatic) tumour deposit.
Later that day, Dr A consulted Dr B. Mrs A advised me that she and her husband were informed that the growth seen on the CT and MRI scans was a tumour but that it was uncertain whether it was a primary or secondary growth. Dr A stated that Dr B recommended a biopsy, to which he agreed. The procedure was scheduled for Monday 30 April at a private hospital.
Dr B advised me that at the consultation on 27 April he explained to Dr and Mrs A that the growth was likely to be a malignant tumour but that a biopsy was needed to confirm that. He also informed them that the amount of tumour he would remove would depend on "the pathology and what was found at operation". If the tumour was a metastatic deposit then excision was likely. However, if it was a primary brain tumour then it was unlikely that the tumour would be completely removed, and there was a possibility of his hemiparesis (paralysis of one side of the body) becoming worse if radical excision was undertaken. Dr B stated that "the irresectability of the glioblastomas was mentioned in the pre-operative consultation, although it appears this was not fully understood by [Dr A]". Dr B also stated that other risks associated with surgery were discussed and that Dr A accepted them.
Mrs A recalled that her husband was concerned that if the tumour was a secondary growth his "prospects would be bad". He was hoping that it was a primary growth and anticipated that the tumour would be removed if possible.
In a letter to Dr D dated 27 April 2001, Dr B stated:
"We have discussed this at length, but histological examination is necessary and we have agreed to proceed to a craniotomy on Monday 30th April. He is aware of the risks of the surgery and in particular, the possible worsening of his left sided hemiparesis."
On 29 April Dr A was admitted to the private hospital as scheduled. He signed a consent form for "craniotomy and removal of tumour". Mrs A was under the impression that her husband was there to have the tumour removed rather than just biopsied for the purpose of diagnosis. She "hoped and expected" that Dr B would remove the tumour.
On 30 April 2001 Dr B performed a craniotomy and located the tumour using ultrasound. A biopsy of the tumour was performed. The tumour was found to be necrotic and at operation the frozen section confirmed that it was a glioblastoma. Dr B removed only a small piece of the tumour. He explained that "with the poor prognosis associated with glioblastoma and the likelihood of making his hemiparesis worse, and therefore curtailing his ability to continue to enjoy playing his music, I felt that nothing further should be done".
Dr B quoted medical literature stating as follows: "Glioblastomas have frustrated every attempt at successful therapy. This is mainly because the tumour is well beyond the reach of local control when it is first detected clinically or radiologically." He also quoted another source stating: "… glioblastomas are among the most malignant human neoplasms with a mean total length of disease … of less than one year". Dr B explained that survival times relative to the degree of tumour resection are not substantially different:
"With the above in mind, surgical options have to be tailored to the individual. The patient's clinical status notwithstanding, the tumour's site and size being the determining factor as to what surgical option is best. The adage of 'first do no harm' remains paramount in neurosurgery and in [Dr A's] case the risk of a hemiparesis and the inability to continue with his music for the short time he had left was a major consideration."
Postoperative consultations with Dr B
Mrs A advised me that on 1 May 2001, the day after the operation, Dr B informed her husband (while still in the hospital's Intensive Care Unit) that he had been unable to remove the tumour and was awaiting the histology report.
On 3 May Dr B told Dr A the biopsy result. Dr A stated that Dr B informed him and his wife that the growth was a malignant primary glioblastoma and that he had a terminal condition. Dr B told him that there was no surgical option "that would make any difference", the only option being palliative therapy.
Mrs A advised me that because Dr B told her husband and her that "there was nothing he could do", "no surgery would be of benefit" and "nobody survives these things", they did not ask Dr B about the option of further surgery. According to Mrs A, the meeting with Dr B was unscheduled, took place at 7am and was brief (about five minutes).
Dr B confirmed that on 3 May he discussed the diagnosis of malignant tumour with Dr A and his wife, and explained the "grave prognosis" and that "his mainstay of treatment would be radiotherapy". He said this was accepted by Dr and Mrs A and that he arranged for Dr A to be seen by Dr C, a radiation oncologist, later that day - before he was discharged from hospital. In a letter of referral to Dr C, Dr B wrote: "At present [Dr A] has no neurological deficit … He is a delightful chap and hopefully we can do our best by him."
When asked whether at that time he was aware of the availability of more aggressive surgery for glioblastomas, Dr B stated:
"Aggressive surgery for glioblastomas has been around for as long as I have been in neurosurgical practice but has never been shown to prolong longevity significantly and has certainly never been shown to be curative. Although only a biopsy was taken, this was discussed with the … family. I explained that I did not perform radical surgery for fear of damaging him, and this was accepted."
Dr A's son advised me that on the afternoon of 3 May he spoke to Dr B by telephone. He said that Dr B informed him that the tumour his father had was a "very bad tumour" and did not offer further surgery as a "possible solution to a longer life". He said he was told by Dr B that the family "could be looking at six weeks, worst case". Mrs A recalled that her family was told by Dr B that "only about 5% of people [diagnosed with this type of tumour] survived to the two year mark". In a letter to Dr A's insurer dated 6 June 2001, Dr B stated that Dr A's prognosis was "poor and life expectancy would be likely to range from six months to two years".
There was no further contact between Dr A or members of his family and Dr B after this date. The appointment for a postoperative check scheduled for 23 May was subsequently cancelled by Dr A. Dr B advised me that at this meeting "the pros and cons of further surgery could have been discussed in detail with [Dr A] and his family, but unfortunately by that time they had decided on a different path, which they were quite entitled to do, and no further contact was made by them after their cancellation of this appointment".
Consultation with Dr C
On 3 May 2001, at approximately 6pm, Dr C came to the hospital to see Dr A as arranged by Dr B. Present with Dr A were his wife, mother-in-law and son, who had arrived from overseas a few days earlier.
Dr A advised me that Dr C confirmed that his condition was terminal with a likely prognosis of six to 12 months. He said that Dr C "stressed" that he agreed with Dr B's opinion that the tumour was inoperable (and incurable) and that the only option that might be of benefit was palliative radiotherapy.
Dr C recalled:
"When I saw [Dr A] I explained to him that in [Dr B's] opinion the risks of attempting a significant resection were probably greater than the possible benefits. I explained to him that new damage to the motor strip could produce permanent paralysis of the left side of his body and even with more aggressive surgery his lesion could not be cured."
Dr C advised me that if major tumour removal is deemed too risky, an open biopsy should be performed to establish diagnosis. As the tumour was very close to the "motor strip", that is the procedure Dr B had performed. Dr C stated:
"… I am not a neurosurgeon and I am not able to offer a professional opinion as to the potential resectability of [Dr A's] tumour. However based on [Dr B's] intra operative findings and his great experience and skill I had every faith that his judgment to biopsy only represented probably the best solution to a very complex problem and probably one that minimized the risk of disability."
Dr C stated that he indicated to Dr A that radiotherapy was offered "with the aim of slowing down of the progression of the tumour and preserving his neurological status as it is for as long as possible". As radiotherapy was not available privately and could not be offered locally through the public system because of Dr A's out-of-area status, Dr C requested radiotherapy for him through another public hospital.
Dr A stated that Dr C raised the possible option of using temozolomide, a chemotherapeutic agent, but that it could only be obtained through participation in a double-blind drug trial. Mrs A advised me that she and her husband did not consider this to be a good option as there was no certainty that he would be given the drug.
When asked what treatment options were discussed with the family on 3 May 2001, Dr C stated:
"I did not offer [Dr A] any specific treatment options as he was [out of region] patient and I could not treat him in …. I referred him to the Oncology Department at [the second public hospital] for further treatment. The options of potential therapies that may be offered at [this hospital] included radiotherapy, chemotherapy at disease progression and re-operation should the disease progress and be surgically resectable."
Mrs A had a slightly different recollection, as follows:
"I remember explicitly that my husband asked that if we were to move up to [the city], whether [Dr C] would be able to treat him. We also talked at length about the trial being done with Temozolomide. We were told that they had strict guidelines on regions and treatment within your region. Then we resigned ourselves to the fact that we'd have to go to [the second public hospital]. We asked if we would be able to pay for the radiotherapy and have it done privately by him. We then found out that you cannot have private radiotherapy in NZ."
When asked about the family's response to the proposed management of the tumour, Dr C stated:
"The responses of [Dr A] and his family seemed to me to be one of understandable shock at hearing the severity of the illness but at no stage did they raise any further questions of management with me and were happy for him to be referred to [the second public hospital]. At no stage did I indicate to them that I was his oncologist but rather that I saw him as a professional courtesy in order to expedite his referral to the Oncology Department at [this hospital]."
When asked whether at that time he was aware of the availability of more aggressive surgery for glioblastomas, Dr C stated:
"The stated goal of surgery is maximal safe resection of tumour and this has been the case for at least 10 years. The main factor complicating very wide resection was the proximity of the motor strip and risks of hemiparesis. The role of neurosurgery was not discussed with [Dr A] as I am not a neurosurgeon and [Dr A] was under the care of an excellent neurosurgeon. I believe that [Dr A] and his family had the opportunity to discuss these issues when they saw the neurosurgeon on the ward. Had they raised these issues with me I would have referred them back to the neurosurgeon as surgical techniques are not my area of special expertise."
Dr C acknowledged that the extent of tumour resection in glioblastomas and its role in prolonging survival is controversial. However, he stated:
"I did not recommend further excision for two reasons. Firstly I was never asked by [Dr A] or his family whether or not he should have further resection and secondly, the decision to resect and the extent of resection is best left only to trained neurosurgeons who have an understanding of the risks of major catastrophic motor losses especially when the benefits of resection remain controversial."
Mrs A advised me that the meeting with Dr C lasted about half an hour. She confirmed that the issue of further surgery was not raised by the family or Dr B. After the meeting the family drove back to their hometown.
There was no further contact between Dr and Mrs A and Dr C after this date. Dr C advised me that this was despite his offer of free advice in the future and giving them his mobile and home telephone numbers. Had Dr A contacted him, he "would have been happy to address any of his questions and to provide him with appropriate literature, as I do for all patients who ask these questions of me".
Events leading to the second opinion
Mrs A advised me that on 5 May 2001, two days after seeing Drs B and C, Dr A and their other son searched the internet for information on glioblastomas. Several days later she and her husband were told by their friends of an item that screened on the Holmes television programme on 8 May involving an 8-year-old-boy who had undergone brain tumour surgery overseas after reportedly being told by doctors in New Zealand that the tumour was inoperable. The tumour was similar to the one her husband had. Dr E was named as the surgeon who had performed the operation. Dr A explained that it was through the media that he found out that aggressive surgery was the best option for his type of tumour.
Mrs A advised me that after the 3 May consultations with Drs B and C, she and her husband did not contact either doctor to discuss the additional information they had obtained about the option of further surgery. Dr B's manner and brevity, and the fact that they were told by him and Dr C that the tumour was inoperable, were cited as the reasons for the lack of further contact.
On 11 May Dr A had a CT scan at his hometown public hospital, which showed that the tumour size remained unchanged.
Mrs A advised me that a day or two after hearing of the 8-year-old boy's case, her husband telephoned a friend overseas, who made enquiries on his behalf regarding the identity of the neurosurgeon mentioned in the Holmes programme. Through this contact Dr A obtained contact details for Dr E at a private hospital overseas. Dr A telephoned Dr E's rooms and discussed his case with Dr E's assistant. He was asked to courier his MRI scans and was informed that Dr E would call him back if something could be done. The scans were couriered on Monday 14 May 2001. The following evening, Tuesday 15 May, Dr E telephoned Dr A and told him that he was confident that he could remove the tumour. Dr A saw Dr E overseas on Thursday 17 May. Surgery was scheduled for Monday 21 May.
On 14 May 2001 Dr C wrote to a radiation oncologist at the second public hospital, requesting radiotherapy for Dr A. Mrs A advised me that the appointment for radiotherapy at this hospital arrived while she and her husband were overseas. Because more precise radiation treatment was available overseas, they decided to have the radiotherapy there. No radiotherapy treatment was received by Dr A at this hospital.
On 21 May 2001 Dr A underwent a surgical resection of the tumour performed by Dr E at the overseas hospital, with no resulting hemiparesis. In a letter to Dr D dated 22 May 2001, Dr E stated:
"Thank you for asking me to see [Dr A] for a second opinion regarding his malignant glioma … I discussed the various options available to [Dr A] including repeat surgery for further debulking of the tumour, no further surgery and radiotherapy and chemotherapy. He understands the various pros and cons of all the options and has chosen repeat surgery. I made it quite clear to [Dr A] that surgery was certainly not curative and that further resection would surely be associated with high risk. He also understands that there is no good scientific evidence to suggest further sub-total resection of this tumour would necessarily increase his life span. … He underwent surgery yesterday with an excellent almost complete macroscopic removal of the glioma with no new neurological deficits … he will consult the radiotherapist as soon as possible."
A copy of the letter was sent to Dr B.
In a letter dated 24 May 2001 and addressed "To Whom It May Concern", Dr E stated:
"This patient has been treated by … and myself over the past week, for a malignant brain tumour (glioblastoma multiforme). Normally, the prognosis of these tumours is not favourable (less than 12 months)."
In a letter to Dr B dated 28 May 2001, a second radiation oncologist at the private hospital stated that the plan was to commence Dr A on cycles of temozolomide and radiotherapy. On the same day Dr A lodged an application for a "Terminal Illness" claim with his insurer. In a letter to the insurer dated 6 June 2001, Dr B stated:
"His [Dr A's] prognosis is poor and life expectancy would be likely to range from six months to two years. Any further surgery or treatment is palliative."
A copy of that letter was sent to Dr A.
On 27 November 2001 the local newspaper reported that the previous week Dr A returned from overseas "with the 'all clear' from a follow-up check-up with [Dr E] and MRI scan …". On 18 February 2002 Dr A had a CT scan performed at the local hospital. It showed no recurrence of the tumour.
On 10 October 2002 Dr A's case featured on the Holmestelevision programme, with interviews with a city neurosurgeon and Dr E. The neurosurgeon stated that Dr E was offering patients an operation they can have in New Zealand funded by the public health system, but that to suggest that removal of a growth visible on a scan was a cure, was to offer patients a false sense of hope; such tumours are resistant to radiotherapy, chemotherapy and surgery. Dr E denied that the surgery he performed offered patients false hope and said that he makes it clear to his patients that the surgery may not extend their life.
Mrs A advised me that at no stage was she or her husband told by Dr B or Dr C that the surgery could be done in New Zealand and that they "were told point blank that nothing could be done other than palliative therapy".
In response to the comments on the Holmes programme regarding the availability of the surgery in New Zealand, Dr B stated that "radical surgery is performed in neurosurgical units in public hospitals and in private institutions when it is deemed safe and, hopefully, beneficial to the patient". In response to the same comments Dr C stated:
"… I agree that [Dr E] does not offer anything substantially different from what is offered in the public system in New Zealand. This relates to my earlier comment that the goal of surgery is maximal safe resection of tumour and this is certainly practised in New Zealand. The neurosurgeon performed resection very close to the motor cortex and the patient awoke [to] no new deficits. I believe that keeping the balance between the two sometimes conflicting dictates of the stated goal is very important especially as there is very little definitive literature on the extent of resection and the likelihood of cure and if the balance shifts the other way the patient could be left with hemiplegia and no improvement in outcome."
Mrs A advised me that her husband had "a very good quality of life" until November 2002 when the tumour recurred. In a letter to Dr D dated 11 November 2002 the second radiation oncologist stated that Dr A "was very well until about 2-3 weeks ago when he began to feel unwell, somewhat fatigued, disinterested, with some head heaviness. This prompted his re-evaluation, MR scan indicating obvious recurrence in the right parietal … Neurological assessment today indicates no evident abnormality. This patient has a recurrent [glioblastoma] with a short disease free interval. The prognosis overall is not great however it is still suitable for surgical resection."
On 26 November 2002 Dr A was reviewed by Dr E. In a letter to Dr D, Dr E stated:
"I saw [Dr A] in my office today. Unfortunately, a follow-up MRI scan has demonstrated recurrence of his malignant glioma. … Given the size of the recurrence, I have offered repeat surgery, but he understands that there is no chance of cure and this may not prolong his life significantly. He also understands that surgery carries risks and these risks include but are not confined to death, stroke, speech disturbance, blindness, etc. He has made it very clear that he would like us to go ahead with surgery and I will schedule this for tomorrow."
Mrs A advised me that the recurring tumour was successfully removed by Dr E and that her husband did not develop hemiparesis after the surgery.
On 4 December 2002 Dr A advised me that he was "tumour free".
In January 2003 Dr and Mrs A returned overseas for further surgery. Mrs A advised me that at this time there was no evidence of a tumour, but her husband had developed "mild" left-sided hemiparesis due to radiation necrosis.
In February 2003 Dr A was reviewed by a Medical Director of a hospice in his hometown, after experiencing convulsions. As Dr A enquired about chemotherapy, he was referred by the Medical Director to an oncologist at the local hospital.
Mrs A advised me that a repeat MRI in March 2003 showed "some area for concern". As a result she and her husband decided on further surgery by Dr E. A fourth operation was performed on 24 March by Dr E. The histology report stated the diagnosis as recurrent glioblastoma and chronic radiation changes. Mrs A advised me that at this stage her husband developed full left-sided hemiparesis. Dr A died in his hometown on 12 May 2003.
Dr A survived nearly two years from the date of the first surgery performed by Dr E (in May 2001). Dr B had given Dr A a prognosis of six months to two years' survival. Mrs A stated that she did not think her husband would have survived the two years had he not had the surgery. She advised me that when they initially went overseas, her husband was "very very sick" - he was having epileptic seizures, and kept losing his balance. Following surgery all seizures stopped and his balance was "OK". Mrs A said that after the surgery her husband was "good for 18 months" and, even if he had not lived that long, he would not have had the quality of life he enjoyed.
Reason for complaint
Mrs A stated that the key aspect of her and her husband's complaint is that Dr B and Dr C did not offer them the option of further surgery or raise it as a possibility. She and her husband "were told point blank that nothing could be done other than palliative radiotherapy". In an article that appeared in New Zealand GP (7 August 2002), Dr A was reported as being "angry" that he had to learn about the surgical brain tumour treatment via a television current affairs programme and stated that he should not have had to learn of his options in that way. Mrs A advised me that at no stage were they told by Dr B or Dr C that the surgery could be done in New Zealand as mentioned in the Holmes programme.
Mrs A stated that Dr B did not enquire into her and her husband's views when deciding not to perform further surgery (greater excision of the tumour). She did not accept his concern about the risk of hemiparesis, which would prevent her husband from being able to play his much loved music, as an explanation for not offering or performing further surgery. Mrs A said that it was up to the patient to make that decision and that it was "our call, not his". Her husband was aware of that risk prior to the craniotomy on 30 April 2001.
Mrs A said that although Dr C was a radiation oncologist and not a neurosurgeon, she would have expected him to explore all options - "I think he did have an obligation [to explain the option of surgery] because he was sent as [Dr B's] representative." Dr C commented:
"I did not talk about more aggressive resection firstly because it is not my specialist area and secondly because I felt that surgery had achieved the stated goals and was in line with international guidelines …"
Response to Provisional Opinion
In response to my provisional opinion, Dr B commented as follows:
"I have received and read your report on the complaint from the … family regarding surgical treatment for [Dr A's] glioblastomas and have reviewed my explanation of treatment options.
Your conclusion that I am in breach of the Patients' Code of Rights is, with respect, not correct. Certainly I have quite a different opinion. Without repeating all that I said in my earlier letter, I would like to emphasise the following:
An appointment time had been arranged for a post-operative visit in my rooms following discharge from [the private hospital], at which time the pros and cons of further surgery could have been discussed in detail with [Dr A] and his family, but unfortunately by that time they had decided on a different path, which they were quite entitled to do, and no further contact was made by them after their cancellation of this appointment.
The irresectability of glioblastomas was mentioned in the pre-operative consultation, although it appears this was not fully understood by [Dr A]. I suspect we may underestimate the amount of information absorbed by patients in times of crisis and unfortunately we have no way of determining how information is processed by an individual. However, at all times in my management of [Dr A] I believed I was doing the best for him.
In conclusion I would be grateful if you would amend your opinion to delete the conclusion that I have breached the Code of Patients' Rights. In saying this, I should make it clear that I most certainly regret that the family have been unhappy with my treatment and I have no hesitation in apologizing for this."
Code of Health and Disability Services Consumers' Rights
The following Rights in the Code of Health and Disability Services Consumers' Rights are applicable to this complaint:
Right to Effective Communication
1) Every consumer has the right to effective communication in a form, language, and manner that enables the consumer to understand the information provided. …
2) Every consumer has the right to an environment that enables both consumer and provider to communicate openly, honestly, and effectively.
Right to be Fully Informed
1) Every consumer has the right to the information that a reasonable consumer, in that consumer's circumstances, would expect to receive, including -
b) An explanation of the options available, including an assessment of the expected risks, side effects, benefits, and costs of each option; …
Opinion: Breach - Dr B
Dr A complained that in May 2001 Dr B did not inform him of the option of surgery, specifically brain tumour resection and its expected benefits.
On 27 April 2001 Dr B saw Dr A with the scans indicating the presence of a brain tumour likely to be malignant. To establish whether it was malignant and whether it was a primary or secondary growth, Dr B recommended biopsy. According to Dr B, Dr A was informed that the amount of tumour that would be removed would be dependent on "the pathology and what was found at operation" - if the tumour was metastatic, excision was likely; if the tumour was a primary, then it was unlikely that the whole tumour would be removed because of the increased risk of hemiparesis associated with radical excision. Dr A signed a consent form for "craniotomy and removal of tumour".
Naturally, Dr and Mrs A were hopeful that the tumour was a primary growth that could be surgically removed. Indeed, Mrs A was under the impression that the primary reason for his surgery was to remove the tumour. Dr and Mrs A did not challenge the amount of tumour resected on 30 April 2001, in the immediate postoperative period or subsequently.
After the surgery Dr B saw Dr A on two occasions, 1 and 3 May 2001. On the second occasion Dr A, with members of his family present, was informed by Dr B that he had a malignant primary glioblastoma and that it was inoperable. Based on his knowledge that aggressive surgery of glioblastomas has not been shown to be curative or to significantly prolong longevity, Dr B offered palliative radiotherapy as the only management option. He explained that he did not perform radical surgery because he did not want to "damage" Dr A by causing paralysis.
The prognosis associated with glioblastomas is very poor - they are resistant to all known forms of treatment (chemotherapy, radiotherapy and surgery) and a wider excision of the tumour carries an increased and significant risk of hemiparesis. However, Dr B's stance that radical surgery was not a realistic option for Dr A - although consistent with mainstream neurosurgical opinion in New Zealand - did not absolve him of his obligation to provide his patient with full information (all the information that a reasonable patient in Dr A's circumstances would expect to receive) about alternative neurosurgical treatment options. At a time when New Zealand patients are not infrequently referred overseas for medical care (even in the publicly funded system), this includes information about treatment options available (albeit in private) overseas. Dr A was entitled to that information to be able to make an informed choice.
It would not be reasonable to expect Dr B to offer to perform a procedure that he did not believe was a viable option. But he needed to raise the option of further surgery, which he knew to be a viable option, and explain why he thought the risks outweighed any potential benefit.
As Mrs A pointed out, the decision was ultimately "our call, not his". Surgeons have a responsibility to locate their own opinions within the spectrum of professional views about possible procedures and to contextualise their recommendations, rather than simply "announce" their stance.
There is no evidence that Dr B discussed any option other than palliative radiotherapy with Dr A. He did not offer to refer Dr A to another neurosurgeon for a second opinion. He certainly did not engage in the sort of discussion that Dr E is reported (in his letter of 22 May 2001 to Dr D) to have had with Dr A.
One of the key problems in this case is the timing and manner of Dr B's communication with Dr A and his family. The postoperative consultation on 3 May was relatively brief, and was unscheduled. Given the diagnosis and the gravity of the prognosis, the appropriateness of the time allocated by Dr B for discussion must be questioned. Dr B could not be expected to "drop everything" on an early morning ward round and engage in a lengthy discussion with Dr A and his family. But the full consultation should have been scheduled for (around) three days later, not three weeks later.
Had longer time been allocated, at an early date and a time convenient for Dr A and his family, a fuller discussion would have been possible and the matters that gave rise to this complaint may not have arisen.
I note Dr B's comment in response to my provisional opinion that "we may underestimate the amount of information absorbed by patients in times of crisis and unfortunately we have no way of determining how information is processed by an individual". That, of course, is a reason for taking extra time and care in explaining information about a life-threatening illness.
I accept Dr B's statement that at all times he believed he was doing his best for Dr A. However, by failing to arrange an appropriate time and place to enable effective communication, and to provide full and contextualised information, Dr B deprived Dr A and his family of the opportunity to weigh the very limited options for themselves.
Dr B took brief and incomplete clinical notes of his consultations. It would also have been prudent for Dr B to take more detailed notes of his consultations and discussions with Dr A and his family.
It may be countered that Dr A and his wife do not appear to have questioned Dr B about his proposed management plan or asked about any other available treatment options. Dr B seems to have been left with the impression that Dr A and his family accepted his assessment and the proposed palliative radiotherapy. He may have expected that any further questions would be raised at the scheduled appointment at his rooms on 23 May (three weeks later) or that he would be telephoned for advice in the interim. But from the family's perspective, the gloomy prognosis given at the brief 3 May meeting may well have made any further discussion seem pointless. They may also have felt too shocked to question Dr B's judgement.
It could also be argued that, as a medical practitioner, Dr A had some understanding of brain tumour pathology and referral processes, and was in a better position than most patients to raise any concerns with Dr B. However, the duty to volunteer information about treatment options is not dependent on the patient asking questions, and Dr A, a general practitioner, saw Dr B in his specialist capacity. In these circumstances I consider that Dr A was entitled to all the information an "ordinary" patient would expect; indeed, given the particular circumstance of his being a general practitioner/patient, arguably even greater information disclosure was required.
In summary, Dr B had an obligation to inform Dr A of the option of wider resection of the tumour - even if he did not recommend it or was unwilling to perform it himself - and to facilitate discussion of the feasibility of that option. By failing to discuss the option of further surgery with Dr A, and the risks, side effects and benefits of the procedure, Dr B breached Right 6(1)(b) of the Code.
Opinion: No breach - Dr C
Dr A complained that in May 2001 Dr C did not inform him of the option of surgery, specifically brain tumour resection and its expected benefits.
Dr C saw Dr A on only one occasion, on 3 May 2001 at the request of Dr B, to discuss and arrange palliative radiotherapy for Dr A. He saw Dr A in his capacity as a radiation oncologist, not as a neurosurgeon. Although Dr C agreed with Dr B's view that the risks of attempting a wider resection of the tumour were greater than the possible benefits, he did not offer or hold himself to be offering neurosurgical advice.
On 3 May no specific treatment options were offered by Dr C. Because radiotherapy was available only in public hospitals and Dr A lived outside the region, Dr C arranged for him to have radiotherapy at the second public hospital. As Dr A or his family expressed no reservations about the proposed radiotherapy and seemed happy with the referral to the second public hospital, Dr C was not aware that Dr A was unhappy with the proposed management of his tumour. I am satisfied that had Dr C been made aware of any concerns, he would have referred Dr A back to Dr B so the concerns could be dealt with. Although Dr C made himself readily available to Dr A and his family, and provided his mobile and home telephone contact numbers, they did not contact him again.
Given that the referral was for the purpose of discussing and arranging palliative therapy, and that he was not aware of any reservations or concerns Dr A and his family had about the proposed management, Dr C did not have an obligation to inform Dr A of the option of further surgery. Accordingly, in my opinion Dr C did not breach the Code.
The extent of tumour resection in glioblastomas and its role in prolonging survival appears to be controversial. While there is a consensus that glioblastomas are incurable, there is a divergence of opinion whether radical surgery significantly prolongs longevity and whether the risks associated with radical surgery outweigh the potential benefits. The practice of radical excision of glioblastomas appears not to be widely accepted in Australia and New Zealand, and the overseas-based surgeon who performed surgery on Dr A has been criticised by colleagues for performing such surgery.
As Commissioner it is not my function to comment on the merits and benefits of different medical procedures, or whether the radical surgery in this case ultimately extended or improved the quality of Dr A's life. However, what this case highlights is the need for medical practitioners (and other health professionals) to ensure that all relevant information, including availability of treatment options, is explained to patients in a way that facilitates discussion, to enable them to make an informed choice.
I recommend that Dr B:
- apologise in writing to Mrs A for his breach of the Code. This apology is to be sent to the Commissioner's Office and will be forwarded to Mrs A.
- review his explanation of treatment options available to patients, in light of this report.
- A copy of this report will be sent to the Medical Council of New Zealand.
- A copy of this report, with identifying features removed, will be sent to the Royal Australasian College of Surgeons and the Royal Australian and New Zealand College of Radiologists, and placed on the Health and Disability Commissioner website, www.hdc.org.nz, for educational purposes.
 Atlas of Tumour Pathology - Tumours of the Central Nervous System, P C Burger and B W Scheithauer, page 67, published by the Armed Forces Institute of Pathology, Washington, DC.
 World Health Organization Classification of Tumours - International Agency for Research on Cancer (IARC) - Pathology and Genetics of Tumours of the Nervous System, P Kleihues & W K Cavenee, page 38.