TITLE OF COURT: Coroner’s Court
JURISDICTION: Alice Springs
FILE NO(s): A0072/2004
DELIVERED ON: 22 March 2006 (ex tempore)
DELIVERED AT: Alice Springs
HEARING DATE(s): 20, 21, 22 March 2006
FINDING OF: Ms Helen Roberts, Deputy Coroner
CATCHWORDS:
Reportable Death – Natural Causes – Remote Health Care – Inadequate record keeping.
REPRESENTATION:
Counsel:
Assisting: Ms Lyn McDade
NT Health: Mr Kelvin Currie
NT AJAC: Mr Chris Howse
Judgment category classification: B
Judgement ID number: [2006] NTMC 034
Number of paragraphs: 37
Number of pages: 14
IN THE CORONERS COURT
AT DARWIN IN THE NORTHERN
TERRITORY OF AUSTRALIA
No. A0072/2006
In the matter of an Inquest into the death of
DOLLY GRANITES
ON 29 SEPTEMBER 2004
AT YUENDUMU
FINDINGS
(Delivered 22 March 2006)
Ms Helen Roberts:
1. Dolly Nampajimpa Granites, hereafter referred to as Nampajimpa or the deceased, died on 29 September 2004 at Yuendumu. She was 70 years old. Although she had recently finished a course of radiotherapy to treat breast cancer and was apparently ill, her death was unexpected. In addition, no precise cause of death was known and therefore her death fell within the definition of a reportable death, pursuant to s12 of the Coroners Act.
2. An autopsy was carried out by Doctor Sinton who found the cause of death to be fungal pneumonia, a complication of breast cancer and its treatment. Nampajimpa's death was initially investigated on behalf of the Coroner by Senior Constable Payne of Yuendumu police. This is the usual procedure. In his report to the Coroner, Senior Constable Payne raised a particular issue, that being the lapse of time between the first reference to a breast lump in Nampajimpa's medical notes at Yuendumu Clinic and the date that she ultimately obtained diagnostic tests in Alice Springs and appropriate treatment.
3. I arranged, through Sergeant Lade of the Coronial Investigation Unit, to have further investigations carried out into that issue and the circumstances of the deceased's death. That further investigation was tasked to Detective Sergeant Michael Ordelman, who gave evidence in these proceedings. Section 34 of the Coroners Act details the matters that a Coroner is required to find during the course of an investigation into a death. The section provides:
“(1) A coroner investigating –
(a) a death shall, if possible, find –
(i) the identity of the deceased person;
(ii) the time and place of death;
(iii) the cause of death;
(iv) the particulars needed to register the death under the Births, Deaths and Marriages Registration Act; and
(v) any relevant circumstances concerning the death; or
FORMAL FINDINGS
4. The evidence tendered to this Inquest has enabled me to make the following formal findings:
(i) The identify of the deceased is Dolly Nampajimpa Granites, an Aboriginal female who was born at Boundary Bore, Northern Territory in 1934.
(ii) The time and place of her death was 5.00pm on 29 September 2004 at Yuendumu.
(iii) The cause of death was fungal pneumonia contracted as a complication of breast cancer and its treatment.
(iv) The particulars required to register the death are:
a. The deceased was female.
b. She was an Australian resident of Aboriginal origin.
c. The death was reported to the Coroner.
d. The cause of death was, as it is stated above.
e. The forensic pathologist who viewed the body after death was Dr Terence Sinton.
f. The deceased’s father was Jack Daniels and
g. The deceased’s mother was Molly Daniels.
h. The deceased lived in the Yuendumu Community in the Northern Territory.
i. The deceased was an artist and chairperson.
j. The deceased was born in 1934 and was 70 years old at the time of her death.
5. This public inquest was held at my discretion pursuant to s15 of the Coroners Act. The inquest was held in order to assist me with making findings with respect to the relevant circumstances concerning Nampajimpa's death. Further, it was held in order that I might consider whether I should exercise the Coroner’s functions of making a comment pursuant to s34 or a recommendation pursuant to s35, with respect to matters of public health connected with the death.
6. The public inquest was also held to give the large and loving family of Nampajimpa the opportunity to have some questions of their own answered. I am pleased that Nampajimpa's daughters, granddaughters, sisters, brothers and other family members have been able to attend this inquest, listen to the evidence, and to ask some questions of their own, through the assistance of my counsel assisting, Ms McDade.
RELEVANT CIRCUMSTANCES SURROUNDING DEATH
7. The deceased was a leader of her community in a number of ways. She held at various times positions including chairperson of the Yuendumu Women's Centre, and the Arts Centre. She was involved in establishing the Yuendumu Women's Night Patrol. She was a senior law woman, across not only her own but other language groups on her country, and she regularly participated in and taught women's ceremony.
8. She unfortunately passed away at home in Yuendumu, after returning from Royal Adelaide Hospital having completed a course of radiotherapy as treatment for breast cancer. The evidence in this case is centred around two particular periods of time, or incidents. Those are the initial presentation in October 2002, and the subsequent delay, and then the final days after Nampajimpa's return from Adelaide to the date of her death in Yuendumu.
9. On 2 October 2002, Registered Nurse Lewis saw Nampajimpa at Yuendumu Clinic. Nurse Lewis recorded in her notes as follows:
“Noticed large lump right breast, large lump right upper outer quadrant, non-tender, change in breast shape, query adhering to the skin, no nipple discharge or skin discolouration.”
The notes contained a diagram or a sketch indicating the size of the lump, indicating to Dr Sinton, in conjunction with other information, that the lump was already significant at this stage.
10. In her statement dated 16 January 2006, Nurse Lewis says she does not specifically recall the consultation, thus she only relies on her notes. Nurse Lewis contacted the Duty Medical Officer (DMO) by telephone, Dr Katherine Williams. The DMO (in Alice Springs) was told that Nurse Lewis had noticed a right sided breast lump on her patient. Dr Williams completed referral forms for a mammogram and ultrasound and faxed them to the X-ray Department at Alice Springs Hospital and to the Yuendumu Clinic. She made a plan, conveyed to Nurse Lewis by telephone, which was for the patient to see the visiting DMO on the next occasion that he visited. Although Dr Williams had previously seen Nampajimpa in her capacity as visiting DMO to Yuendumu, this last occurred in the May 2002. Subsequent to this particular referral Dr Williams did not visit Yuendumu again in order to see patients.
11. Dr Williams was an impressive witness and I have absolutely no doubt that she faxed the referrals and conveyed the plan as she said she did in her evidence. The faxed referrals do not appear on the Yuendumu clinic file, nor is there a specific note with respect to the plan.
12. Nurse Lewis gave evidence that as there were no administrative staff at the clinic, the method for dealing with incoming faxes was somewhat “ad hoc” and relied on the nurses having time to look through them. Generally speaking, the record keeping in Nampajimpa's clinic file was poor. That has had implications not only for this investigation but also for the effective follow up of this patient.
13. In any event, an appointment was made at the radiography department at Alice Springs Hospital for the afternoon of 16 October 2002. Travel and accommodation were also booked through the Patient Travel Scheme for the relevant dates. The clinic notes do not record the appointment time, nor the DMO appointment time, although Ms Lewis told me that the notes ought to have recorded those times. Nevertheless, on this occasion Nampajimpa knew of her appointment in Alice Springs. However, she did not attend her appointment. Family here at the inquest have told me that she did not attend because a male relative died suddenly, almost coincidentally with her boarding the plane in Yuendumu, and so she got off the plane to attend to that event. It was not the practice of the X-ray Department at Alice Springs Hospital in 2002 to inform community clinics when patients missed their scheduled appointments. There is a reference in the Yuendumu’s clinic notes in January 2003 to the fact that Nampajimpa was “awaiting a mammogram”. That note was made by Nurse Cheam who does not, I am told, specifically recall that consultation. However, a search of appointment books at Alice Springs Hospital reveals an appointment on the 19 February 2003 for a mammogram and ultrasound in the deceased's name. Again, this appointment is not referred to anywhere in the clinic notes, Nampajimpa did not attend the appointment.
14. There is no further mention in the clinic notes, about Nampajimpa’s breast lump or the missing of the mammogram appointments until March 2004, some 17 months after October 2002.
15. During 2003, Nampajimpa presented to the clinic on some occasions, mostly to collect medication, although occasionally she raised other matters such as concerns about her cataracts or scabies or similar. During that period, apparently she did not raise the subject of her breast lump nor was it raised with her by anyone at the clinic. I am told, I think, by Dr Williams, that Nampajimpa failed to attend two scheduled appointments with visiting male DMO's during 2003 for unknown reasons. However, given the evidence of Nurse Lewis with respect to follow up systems, I cannot be certain that she was aware of them. She also suffered deaths of four close relatives during this period and had extensive ceremonial obligations as well personal grief. Her family suspect that during this time her focus was not on her own health.
16. In August 2003, Nampajimpa did attend a scheduled review with visiting specialist physician, Dr Ciara O'Sullivan. Dr O'Sullivan explained in evidence that her role is as a chronic disease specialist. She would visit community patients for problems such as diabetes and cardiovascular issues. This was the reason she was seeing the deceased.
17. Dr O'Sullivan spent about 45 minutes with Nampajimpa, and compiled a comprehensive report covering a variety of medical subjects. In her view, based on her report and her review of the records, Nampajimpa was a well functioning person who took reasonable responsibility for her health. Dr O'Sullivan explained that in all her consultations she expressly offers an opportunity to patients to discuss anything they want to on that day. Her consultations are unhurried and give patients the space to raise matters. Regularly her patients would raise matters not related to chronic disease, ranging from boils and varicose veins to infertility. In such instances, Dr O'Sullivan would provide some care or a care plan or referral as appropriate.
18. My observations of Dr O'Sullivan were that she was extremely thorough, caring and compassionate. Her demeanour would certainly be such as to encourage patients to discuss their concerns. The evidence I have heard about Nampajimpa is that she was a determined and outgoing person. Her daughter, Cecily, said in evidence that “mum could talk to anyone”, and that included doctors. In August 2003, the month Nampajimpa saw Dr O'Sullivan, she had declined to dance at a women's ceremony held at Papunya. She said she had a cold. She later admitted to Anne Mosey that she had not danced due to the condition of her right breast being heavy, and one might assume painful, and possibly appearing disfigured by the tumor.
19. There is no question that in August 2003 Nampajimpa was aware of her breast cancer. I do not think she was too shy to raise the matter with Dr O'Sullivan. There is also no doubt, that had she mentioned it to Dr O'Sullivan, the doctor would have examined her and taken some steps to help her. Therefore, it must be the case that Nampajimpa chose not to mention the problem to Dr O'Sullivan in August 2003.
20. Evidence from the doctors in this case was to the effect that it is not necessarily unusual for women to deny, even to themselves, problems with breast or other serious illnesses. There is no question that Nampajimpa was ambivalent about receiving the extreme surgical intervention required, when it was subsequently arranged. I have no doubt that she may have been worried about what might follow a visit to the doctor about her worsening tumour, and perhaps she tried to put it out of her mind. I have also already mentioned Nampajimpa’s other worries, family issues and ceremonial obligations that she had to take care of during this time.
21. By March 2004 the tumour was at a stage that Nampajimpa could no longer ignore it. It was no doubt painful. She presented to the clinic on 2 March 2004 saying that her breast was “not okay”. There was an extensive lump, with the right breast much larger than the left breast, and the characteristic appearance of a breast tumour.
22. I will not discuss the details of the action taken by the clinic on this occasion, except to say that the urgency of her condition at that stage was recognised, and immediate steps were taken to arrange diagnosis with surgical review and treatment in Alice Springs. Nampajimpa showed some reluctance, as I have noted earlier, with respect to the mastectomy and did miss appointments. A meeting with Nampajimpa and some family and Nurse Schultz took place to discuss the issues. The clinic made efforts to rebook missed appointments. On another occasion Anne Mosey took Nampajimpa to visit a friend who had recovered from a double mastectomy. Ultimately the deceased made her own decision. That decision was to undergo the surgery, and the subsequent radiotherapy and chemotherapy required to give her an opportunity for survival.
23. Dr Sinton has given evidence that in his opinion Nampajimpa’s survival prospects would have been increased “very much” with earlier intervention. As we know, that earlier treatment did not occur. There was no effective follow-up of Nampajimpa after her breast lump was diagnosed and she failed to attend two mammogram appointments. A number of the nurses, all clearly concerned about what had happened to her, have suggested reasons for why this occurred. There is no recall system in place at Yuendumu Clinic designed to deal with an occurrence such as this one, that is, a patient suffering a potentially terminal illness, who misses a vital diagnostic appointment.
24. According to the evidence of Clinic Manager David Scultz and Nurse Lewis, the paper based or the card based recall system was designed to keep records to prompt the recall of patients to see doctors or nurses regarding chronic conditions, or regular routine matters such as vaccinations or sexual health checkups. It was not designed to accommodate one off serious illnesses, and according to Nurse Lewis, could not at that stage be appropriately modified to do so. It appears from the evidence that the follow up of Nampajimpa’s missed appointment relied on a variety of possibilities. The memory of Nurse Lewis, or perhaps another nurse’s personal knowledge of Nampajimpa, or a nurse looking through all of Nampajimpa’s past notes when she next presented, and raising the issue (as apparently happened on the occasion of January 2003). In a clinic which has been described as busy all the time, with a very high staff turnover, and low staff numbers from time to time, such ad hoc options for ensuring effective follow up seem obviously prone to fail, as they did in this case. According to the evidence I have before me, the card based recall system remains the same today, although there are plans to computerise. There is still no system at Yuendumu Clinic designed to provide follow up for potentially seriously ill patients in similar circumstances to the deceased in this case.
25. On 25 September 2004, Nampajimpa returned to Alice Springs by plane from Adelaide, having completed a second course of radiotherapy. A letter from Dr Penniment, Radiation Oncologist, (Exhibit 12) explains that she was not given what had been understood by some to be a ‘double dose’ of radiotherapy. She may have received two doses, within strict guidelines, in order that she could return home on the Saturday that she did. There is no question that Nampajimpa by this stage was desperate to see her family and to return home to Yuendumu.
26. Anne Mosey, her long time friend, met her at Alice Springs Airport. She looked very weak and tired. Ms Mosey was taken aback by how she looked. Having seen her the previous Monday in Adelaide, she noted a marked decline. Apparently Nampajimpa wanted Ms Mosey to drive her out to Yuendumu, but Ms Mosey did not want to as she was worried about Nampajimpa’s condition and also about interfering with patient travel arrangements. In lieu of this, she took Nampajimpa to see her daughter, who lived in Alice Springs, and she returned her that evening to the hostel accommodation.
27. On Monday, Ms Mosey drove Nampajimpa to the airport for her flight to Yuendumu. After that, she telephoned the Yuendumu Clinic and spoke with Nurse Jo Sillitoe, advising that Nampajimpa was returning on the plane that morning and emphasising that she was not well. This was possibly the first advice the clinic received that Nampajimpa was arriving in Yuendumu, although it is not entirely clear as Nurse Sillitoe did not make a note of the call. Patient Travel also advised Nurse Schultz that Nampajimpa was returning to Yuendumu. The clinic did not at any relevant time receive a discharge summary from Adelaide Hospital with respect to Nampajimpa.
28. In her statement, Ms Mosey was extremely critical of the clinic staff at Yuendumu for what she perceived was their lack of appropriate response to Nampajimpa’s return and her condition. Understandably, Ms Mosey, who has been present through this inquest and very supportive of the family, was shocked and upset to hear of her close friend’s death. Ms Mosey said that she expected that upon Nampajimpa’s arrival in Yuendumu, the nurses would “take one look at her”, and put her on the plane immediately back to Alice Springs Hospital. In evidence, Ms Mosey agreed that this expectation was somewhat at odds with her own decision over the weekend not to take Nampajimpa to Alice Springs Hospital herself. Ms Mosey gave some reasons for the decision she had made at the time, and she said that with hindsight she wished she had taken the opportunity to take Nampajimpa to hospital over that weekend. One of the reasons she gave was her perception was that Nampajimpa would not want to go to hospital. Undoubtedly, Nampajimpa’s priority was to be with her family.
29. When she arrived in Yuendumu, Nampajimpa sat down in her daughter Cecily’s house. She told Cecily that she was “only going to be there for three days and then [she] would be gone”. Nampajimpa was really sick and she could hardly talk. Cecily was extremely worried by her mother’s appearance and her words and she wanted the nurses from the clinic to come and see her. The evidence is in conflict about whether there was a visit by Nurse Jo Sillitoe prior to Nampajimpa’s death. There is no record of a visit in the clinic notes. In her statement, Cecily makes reference to a visit by Nurse Jo on the Monday, although she resiled from that in evidence. Nurse Sillitoe, (that is Nurse Jo) said in evidence that she visited the house on what she recalled to be the Tuesday at about 5:30 pm. Nampajimpa was asleep and the nurse took no observations and she did not note the visit. Cecily Granites is emphatic that this visit did not take place. I do not think it is necessary to resolve this point as the visit, if it occurred, did not involve any examination and therefore did not contribute to the provision of health care to Nampajimpa in any event.
30. Nurse Veerkamp definitely visited Nampajimpa on the afternoon of Tuesday the 28th. It seems likely she visited at the request of a family member, advising her that Nampajimpa was “really sick” and requesting that she come. Nurse Veerkamp is not sure now precisely what information she had about the deceased’s recent treatment. She was relatively new in the community and it is likely she only had some general information. She was concerned at the appearance of Nampajimpa when she arrived. She was non-responsive and not able to swallow or eat. Nurse Veerkamp spent close to an hour at the house, giving the deceased fluids and food, liquid Panadol, checking her medication and taking observations. She showed the family how to care for her, including helping her to move her onto a new mattress and mashing up food. By the end of the time there, there was a marked improvement in that the deceased had sat up and was talking with her family. Nurse Veerkamp felt satisfied to leave.
31. The next day at the clinic, she sorted out Nampajimpa’s medication, but ran out of time to take the dosette box to the house. Mr Chris Howse submits that Nurse Veerkamp ought to have arranged, on the Tuesday, for Nampajimpa to go to hospital. Taking Nampajimpa’s medical condition as the sole consideration, and with the benefit of hindsight, there is absolutely no question that the place for her at that time was a hospital. However, although not long in Yuendumu, Nurse Veerkamp was an experienced nurse. She made an assessment based on the available information. She was not only surprised, but devastated, when she heard that Nampajimpa had died the next day.
32. On the Wednesday Cecily and family members went to the clinic at least once and probably more than once to seek more help for Nampajimpa. Only one occasion is documented, by Nurse Sillitoe, who advised she would go to the house when she finished with the patient she was seeing, that was about quarter to five. By the time she arrived at the house, about 5:30pm, Nampajimpa had already died.
33. Dr Sinton gave evidence that fungal pneumonia, appropriately treated, is survivable and that diagnostic tests for fungal pneumonia are reasonably routine procedures carried out in a hospital. Fungal pneumonia is a relatively uncommon, but well recognised, complication of advanced malignancy and its treatment. An infection of fungal pneumonia takes a few days, perhaps longer, to develop. It is not known whether Nampajimpa's condition observed on the Saturday in Alice Springs was as a result of the effects of radiotherapy or the development of pneumonia or both. Possibly had she been seen in hospital over the weekend, treatment may have been successfully initiated, but it is difficult to predict. It appears almost certain however, that evacuation from Yuendumu within the couple of days before her death would have made little difference to the outcome. It follows that any delay on 29 September by clinic staff in responding to requests by the family did not contribute to the deceased’s death at all. It did, however, contribute to the family’s distress as did the circumstances generally of the three days prior to the deceased’s death as they pertained to the involvement or otherwise of clinic staff.
34. The situation from all perspectives, and I include that of the clinic, was definitely less than ideal. The clinic manager had no formal notice of Nampajimpa's return. He may have heard of the telephone call from Anne Mosey from Nurse Sillitoe, but he had no discharge summary which would contain important information about Nampajimpa’s health, her prognosis, and her care plan. He said he had no time to contact Adelaide Hospital to follow this up. Resources did not allow him to allocate a nurse to look after Nampajimpa. The procedure was that nurses took on patients as and when they presented to the clinic. Thus no plan was made, and no assessment of Nampajimpa was done by a nurse with specific knowledge of or regard to her history.
35. It seems to me that had a system been in place for the management of Nampajimpa, then regular care and attention could have been provided. At the very least she had radiation burns and a large amount of medication that needed to be sorted out. She should have been attended to, at home if necessary, on the day she returned by plane. Counsel for the Department of Health has told me that given the resources at a remote clinic it is unrealistic for me to expect this to have taken place. This is obviously disappointing. Medical care may not have saved Nampajimpa’s life, but it would most certainly have reduced the helplessness and distress felt by her family in her final days.
36. It is worth noting that the circumstances of the deceased’s death were not only distressing for her family, but also for the involved nurses. There is no doubt that resources are stretched and the work is challenging in remote community clinics in Central Australia. Involvement in an unexpected death is a stressful and upsetting experience for nurses and health workers as well as for families. I have heard the witnesses, many of whom were visibly distressed. I have very much borne this in mind and I do not direct criticism at any individual. Compounding the situation was a lack of information leading anyone, except perhaps Nampajimpa herself, to anticipate her death. Nampajimpa was a very special and a very important person. Her loss has been keenly felt. It is regrettable that her family’s grief has been compounded by the circumstances of her last few days.
RECOMMENDATIONS
37. Pursuant to s35 of the Coroners Act, I make the following recommendations:
(1) I recommend that Northern Territory Health send a directive to remote clinics in the Northern Territory emphasising the importance of good record keeping, in particular that all attendances of patients and all appointments made for diagnostic review or otherwise be properly and clearly recorded in the patient’s clinical notes.
(2) I recommend that Northern Territory Health consider conducting a review in conjunction with appropriate stakeholders for the management of seriously ill patients in the Yuendumu Community.
Dated this 22nd day of March 2005.
________________________
HELEN ROBERTS
DEPUTY CORONER