Names have been removed to protect privacy. Identifying letters are assigned in alphabetical order and bear no relationship to the person’s actual name.

Introduction

1. This report is the decision of Morag McDowell, Health and Disability Commissioner. The report discusses the care provided to Mr A by Health New Zealand|Te Whatu Ora (Health NZ) Southern in 2021 and relates to Mr B’s concerns around the delayed diagnosis of metastatic oesophageal adenocarcinoma, and access to palliative chemotherapy and radiation therapy.
   
   
2. The following issue was identified for investigation:
   • Whether Health New Zealand|Te Whatu Ora provided [Mr A] with a reasonable standard of care from March to September 2021 (inclusive).
     
     
3. The parties directly involved in the investigation were:

Mr A (dec)                                                        Consumer

Mr B                                                                 Complainant

Health NZ Southern                                          Group provider

4. Further information was received from:

Medical centre                                                

Dr C                                                                   General practitioner (GP)

Private hospital

5. In-house clinical advice was obtained from vocationally registered GP Dr David Maplesden (Appendix A).
   
   
6. At the outset I acknowledge that Mr A died from his illness, and I extend my sincere condolences to his family for their loss.

Background

Presentations to medical centre

7. On 17 March 2021 Mr A presented to a medical centre after developing new pain in his left thigh. He was seen by Dr D. Mr A could not recall any recent trauma to his left leg and wondered if the pain was due to overuse given a previous soft tissue injury to his right ankle for which he was receiving physiotherapy.
   
   
8. On examination, Dr D noted: ‘[E]ntire thigh swollen but in particular red, warm and tense swelling from mid to lower posterior thigh — does not involve popliteal fossa.’[1] The area was noted as ‘tender to touch’ with mild pitting oedema.[2] Dr D’s impression was one of swelling of the left thigh, possibly due to cellulitis,[3] but he needed to rule out a deep vein thrombosis (DVT).[4] A blood test showed a raised D-dimer,[5] mildly raised C-reactive protein (CRP),[6] and a normal full blood count and renal and liver function.
   
   
9. On 18 March 2021 Mr A underwent an ultrasound at a private hospital, which excluded a DVT but the report indicated a 16cm medial hamstring tear with associated haematoma.[7]
   
   
10. On 23 March 2021 Mr A again presented to the medical centre as his pain had been worsening and he had difficulty walking. He was taking regular codeine for pain.[8] Due to the worsening pain, a semi-urgent referral was made to Orthopaedics at Dunedin Hospital, and referrals were made for a musculoskeletal ultrasound of his left hamstring and an X-ray of the limb.
    
    
11. Between 29 March and 29 April Mr A presented to the medical centre on three occasions in relation to his pain and swelling, which was persistent and worsening. He was commenced on 20–40mg of furosemide[9] in the morning in an attempt to reduce the swelling.
    
    
12. On 29 April 2021 Mr A’s Orthopaedics referral was declined until an ultrasound and X-rays had been done. The X-ray and ultrasound were scheduled for early June, and an appointment with Orthopaedics was scheduled for shortly after that.
    
    
13. During the period from March to June 2021, Mr A’s condition continued to deteriorate. At his appointment on 12 May 2021 with Dr C, Mr A reported that he was not able to sit or stand for longer than 10 minutes.
    
    
14. On 2 June 2021 Mr A received an X-ray and an ultrasound at a private hospital. The X-ray of the femur showed no abnormality. The ultrasound showed residual haematoma and appearances ‘highly suspicious of a high grade probable full thickness tear of the proximal hamstring origin’. The scan also detected a popliteal thrombus (clot)[10] but the femoral vein was unable to be seen due to swelling. Mr A was commenced on medication to treat the thrombus, and a further semi-urgent referral to Orthopaedics Dunedin was made on 8 June.
    
    
15. On 18 June 2021 Mr A saw Dr C about an itch affecting his left leg, and again they discussed Mr A’s ongoing symptoms. Dr C noted that further imaging had been scheduled to provide a more precise diagnosis.

Review by orthopaedic specialist

16. On 24 June 2021 Mr A was seen by orthopaedic specialist Dr E, who was concerned about Mr A’s unusual history and presentation, which was inconsistent with a hamstring injury. An MRI[11] was arranged to gather further information about the hamstring, and an MRI venogram[12] was arranged due to concerns about the possibility of a venous obstruction above the thigh level.
    
    
17. Mr A underwent the arranged MRI on 15 July 2021. The imaging showed a tumour in the left lower limb and the pelvic girdle region (suspected to be cancer). On 19 July Mr A was transferred to Dunedin Hospital, initially under the care of Dr E, for further investigation.
    
    
18. Further imaging undertaken on 19 and 23 July 2021 also noted oesophageal cancer, which was suspected to be the primary cause of Mr A’s more widespread cancer.

Oncology care

19. Mr A’s care was transferred from the surgical team to the Oncology team at Dunedin Hospital on 27 July 2021. Mr A was accepted and triaged as ‘urgent’ (to be seen within 48 hours). Mr A was referred to Medical Oncology promptly, and on 28 July 2021 he was triaged as ‘AC3 — Symptomatic Therapy for Chemoresponsive Incurable Disease’.[13]
    
    
20. Mr A’s case was discussed at the gastrointestinal cancer multidisciplinary meeting (MDM) on 29 July 2021, and it was agreed that his oesophageal cancer was incurable.
    Accordingly, the MDM recommended palliative treatment. The MDM discussed the treatment plan of palliative radiotherapy followed by systemic chemotherapy. The clinical notes from 29 July 2021 record that Mr A and his family were informed of this diagnosis and reassured that ‘[radiation oncology would] play an important role going forward … so as not to affect [quality of life]’.
    
    
21. The clinical notes show that on 30 July 2021 a radiation oncologist saw Mr A to reiterate the findings of the MDM and create a plan for his radiation treatment. The oncologist wrote to Dr E outlining his plan to offer Mr A a single treatment of palliative radiotherapy to the oesophagus to control bleeding, five treatments over one week to the mass in his left thigh to manage pain, and a referral to the pain service and palliative care for wraparound care.
    
    
22. Mr A received radiation treatment in accordance with the oncologist’s plan, which commenced on 3 August 2021 and was completed on 6 August 2021. The oncologist saw Mr A again on 6 September and booked him in for further palliative radiotherapy, this time on cancer that had spread to his right pelvis. This second round of radiation was delayed and eventually booked for a few weeks later (although Mr A died before the scheduled date).

Medical Oncology First Specialist Assessment

23. The Clinical Prioritisation Guidelines in place at Health NZ Southern at the time required patients triaged as AC3 to receive a first specialist assessment (FSA) from a medical oncologist within four weeks of referral. Health NZ told HDC that at the time of Mr A’s referral, the standard wait time for FSAs for patients in Mr A’s position was approximately eight weeks, due to ‘reduced capacity within the Medical Oncology Service’.
    
    
24. It was recommended at the MDM on 29 July that Mr A should receive systemic chemotherapy. However, Mr A never received an FSA for chemotherapy, despite the criteria at the time requiring that he be seen within four weeks from 28 July 2021 (the date of referral). Mr B’s complaint states that the FSA did not occur ‘despite approaches by the family and on their behalf’. Mr B believes that ‘any opportunity for … palliative chemotherapy was delayed until it was no longer possible’. Mr B’s complaint also highlights that ‘[t]he toll on [Mr A’s family] … and friends has been high’ and that access to palliative chemotherapy may have reduced the suffering Mr A endured in the last months of his life.
    
    
25. Health NZ acknowledged and apologised that despite Mr A’s family approaching the service to follow up Mr A’s treatment, Mr A was not seen by a medical oncologist before his death. It is not clear whether this delay or the reasons for it were communicated to Mr A or his family at the time of his care. In response to my provisional opinion, Mr B clarified that he was not aware that any reasons for the delay were provided. Instead, verbal reassurances were given that an appointment would occur.
    
    
26. Health NZ told HDC that because of the rapid deterioration of Mr A’s disease, by the time he was due to be seen by a medical oncologist, he ‘had deteriorated to the point that chemotherapy was not appropriate; the benefit even if treatment had been given earlier is doubtful’.

Second round of radiation therapy

27. Following Mr A’s August 2021 radiation treatment, on 6 September 2021 he was referred for further palliative radiation treatment, this time for cancer in his right pelvis. This was planned to be done while Mr A was an inpatient at Dunedin Hospital.
    
    
28. As noted above (paragraph 22), this second round of radiotherapy was delayed and Mr A died before it could be administered.
    
    
29. Health NZ Southern told HDC that the delays in Mr A receiving further radiation were due to the Radiation Oncology department being at capacity due to a post-COVID surge of patients receiving treatment, resulting in treatment machines being at capacity. This pressure on the department was amplified by machine replacement work and breakdowns, resulting in fewer-than-usual machines to treat higher-than-usual demand.
    
    
30. Health NZ Southern told HDC that ‘under different circumstances’ Mr A would have been scheduled for earlier treatment. However, due to the above issues with capacity and resourcing, in 2021 Health NZ Southern prioritised the treatment of patients with the most acute need. Health NZ Southern told HDC that because Mr A was not to receive curative treatment, and his pain was reported to be well controlled, he was not scheduled for early treatment.

Commissioner-Initiated Investigation into delays in provision of non-surgical cancer services

31. In April 2023 I published a report on my investigation into Health NZ Southern’s delivery of non-surgical cancer services, including delays in patients obtaining FSAs, over the period of 2016 to 2022.[14]
    
    
32. My report noted:

‘[Health NZ Southern] failed to recognise and respond to the clinical risk created by lack of capacity within the Southern Blood and Cancer Service (SBCS).[15] This was due to poor overall clinical governance systems, including inadequacies in quality measures and indicators, and poor relationships between clinicians and executive management.’[16]

33. The report acknowledged the resource constraints affecting the timely provision of specialist procedures but considered that the care provided by Health NZ Southern was not adequate in the circumstances, as the clinical governance systems in place at the time prevented the patient risk caused by delays from being identified and addressed.
    
    
34. My investigation found that Health NZ had failed to provide services to patients within the SBCS in a manner that minimised the potential harm to, and optimised the quality of life of, those patients, and therefore breached Right 4(4)[17] of the Code of Health and Disability Services Consumers’ Rights (the Code).
    
    
35. I also made adverse comment about the support offered to patients affected by Health NZ Southern’s delays in non-surgical cancer services, noting:

‘In my view, patients would have benefited from a more consumer-centred, humanised approach, including a clinical navigator service or point of contact within the district, and the offer of subsidised GP visits if their circumstances changed.’

36. I made several recommendations, including that Health NZ Southern:[18]

1. 1. Consider establishing a system that provides a single point of contact (for example, a patient navigator service) for patients who are on the waiting list for FSA.
      
      
   2. Provide a report on the implementation of the recommendations of the Southern District Health Board Review 2021 and the EY report of 2022.
      
      
   3. Review the circumstances of those patients identified as having been harmed in the harm registers referred to in the report, to ensure that ACC treatment injury claims have been made as appropriate.

Responses to provisional opinion

Mr B

37. Mr B was given the opportunity to respond to the ‘information gathered’ section of my provisional opinion. Mr B confirmed that the record of events in this report was accurate to the best of his knowledge.
    
    
38. Mr B told HDC that he understands the pressures and limitations on the public health system, and he believes that services are underfunded and understaffed. However, he does not accept that treatment could not have been provided to Mr A during the COVID-19 pandemic. Mr B told HDC that there should have been clear communication from Health NZ Southern at the outset regarding delays. Mr B noted that Mr A and his family may have considered seeking care elsewhere had they received clear communication regarding delays, rather than ‘the continual promise that therapy would be commencing in short order’.
    
    
39. Mr B’s further comments have been incorporated into this report where relevant.

Health NZ Southern

40. Health NZ Southern was given the opportunity to respond to my provisional opinion, and its comments have been incorporated into this report where relevant.

Dr C

41. Dr C was given the opportunity to respond to my provisional opinion. Dr C confirmed that he accepted the findings and recommendations made in the report. His other comments have been incorporated into this report where relevant.

Opinion: Health NZ Southern — breach

42. Following the preliminary assessment of this complaint I wrote to Health NZ Southern proposing to find it in breach of Right 4(4) of the Code. I considered that Mr A’s care had been affected by the delays of Health NZ Southern’s non-surgical cancer services that I canvassed in my Commissioner-Initiated Investigation completed in 2023 (over the period from 1 January 2016 until 28 February 2022 (inclusive)). Health NZ agreed to my proposed breach in relation to the delayed Medical Oncology FSA and delayed pelvis radiation therapy.
    
    
43. Mr A’s referral was graded as semi-urgent and ‘AC3’ (symptomatic therapy for chemo-responsive incurable disease). Health NZ Southern told HDC that although the criteria for patients such as Mr A to receive a Medical Oncology FSA was within four weeks, in 2021 the wait time for patients with similar criteria to Mr A was approximately eight weeks. These delays resulted in Mr A not receiving a Medical Oncology FSA before he died. I am critical that Mr A was not offered an FSA within the recommended wait time of four weeks.
    
    
44. I acknowledge that, in hindsight, Health NZ Southern considers it doubtful that earlier treatment would have been of significant benefit to Mr A. Despite this, I remain critical that the systems in place at Health NZ Southern meant that cancer patients who were to be seen by a medical oncologist were not seen within the appropriate timeframes or, in Mr A’s case, at all. In this context, Mr A and his family struggled under the burden of diagnosis and illness to follow up on what was happening, ultimately without successfully obtaining an assessment.
    
    
45. I am also critical of Health NZ Southern’s apparent lack of communication with patients affected by the delays. Patients with terminal cancer diagnoses and their whānau are under immense stress and anxiety, which is compounded by delays in receiving appropriate care. As stated in my April 2023 report, I consider that patients such as Mr A would have benefited from contact with clinical navigators while waiting for an FSA so that their circumstances could have been re-evaluated and further options discussed.
    
    
46. While Mr A received radiation therapy to his oesophagus and thigh, there were delays in him receiving further radiation to his pelvis. Mr A died before he could receive a second round of radiation therapy. Delays were explained by Health NZ Southern as being due to a post-COVID surge, and machine replacement work and breakdown. Health NZ Southern also said that in retrospect, ‘the issues involved with delivering the [radiation therapy] … were greater than the possible benefit’, and it suspects that it would have ended up cancelling this treatment due to Mr A’s deterioration.
    
    
47. Right 4(4) states that every consumer has the right to have services provided in a manner that minimises the potential harm to, and optimises the quality of life of, that consumer. I consider that Health NZ Southern failed to provide Mr A with a Medical Oncology FSA within the required timeframes, and radiation therapy to his pelvis, which greatly affected his quality of life in his final months. It is clear to me that the above failures show that Mr A was affected by the delays in Health NZ Southern’s non-surgical cancer service, which formed the basis of the breach in my Commissioner-Initiated Inquiry (referenced above). Accordingly, I find that Health NZ Southern breached Right 4(4) of the Code.

Communication — adverse comment

48. Given the resource constraints, I would have expected Health NZ Southern to discuss the situation with Mr A to explore the options of receiving treatment at another hospital or not receiving radiation at all. I am critical that Mr A remained bed bound and in pain while waiting for radiation treatment, with little communication from Health NZ Southern.
    
    
49. Likewise, I am critical that the delay in Mr A receiving a Medical Oncology FSA, and the reasons for it, appear not to have been communicated to him clearly and honestly. When resource constraints cause adverse effects on patients, I expect providers to have frank discussions with these consumers to manage expectations and discuss the options available to them. I am critical that this did not occur in Mr A’s case.

Opinion: Dr C — adverse comment

50. Mr A first presented at the centre in March 2021 complaining of pain in his leg. He was seen by several GPs, including Dr C. I received clinical advice from Dr Maplesden, my in-house GP clinical advisor, about Mr A’s GP care, which is appended to this report.
    
    
51. Mr B is concerned that malignancy was not considered sooner by the staff, and believes that if it had been, and Mr A had been referred to a specialist earlier, his diagnosis could have been made earlier, allowing for better symptomatic control. Dr Maplesden advised that overall Mr A’s GP care was of an acceptable standard for a working diagnosis of DVT, then of hamstring tear with associated haematoma. It is unfortunate that the suspected hamstring tear masked the malignancy, but I am not critical of Mr A’s overall GP care given the appropriate and more likely diagnoses of DVT and hamstring tear.
    
    
52. While at the time of the referral on 23 March 2021 malignancy was not a consideration, Dr Maplesden is mildly critical that Dr C did not attempt to expedite the imaging on 29 April 2021. Dr Maplesden advised that because Dr C was aware by 29 April that an orthopaedic appointment was yet to be scheduled awaiting imaging, and because of the evolving clinical picture and symptoms atypical of a hamstring injury, he should have confirmed or expedited the scheduling of the required imaging. I accept this advice.}
    
    
53. Dr C told HDC that once the imaging did occur, it did not expedite the diagnosis. While this may be true, I accept Dr Maplesden’s advice that with the information available to Dr C at the time, and without the benefit of hindsight, the imaging should have been followed up.
    
    
54. Dr Maplesden also advised that he is ‘mildly critical that the referral (dated 8 June 2021) did not include an update on the progression and increasing severity of Mr A’s leg symptoms’. I accept that with an evolving clinical picture and worsening symptoms that are atypical of the diagnosis, referrals should include updates on a patient’s condition. This best enables the receiver of a referral to prioritise it based on the full extent of the patient’s symptoms.
    
    
55. I take this opportunity to remind Dr C of the importance of ensuring that appropriate detail is included in referrals, and that referrals are followed up if there are delays.

Changes made since events

56. In August 2022 Health NZ Southern told HDC that ‘in early 2022 [Health NZ Southern] employed two additional medical oncologists’, which has improved the waitlist for FSAs.
    
    
57. On 22 February 2024 I published an addendum to my April 2023 report, which outlines the information received by HDC in response to the recommendations made in that report. The addendum to the report summarises the changes made in detail but, in short, include the following:

1. 1. A primary barrier to reducing the delays in the service is the recruitment and retainment of senior medical officers (SMOs). While there is evidence of work being done in this area, more work is required to address the workforce challenges.
      
      
   2. Considerable progress has been made towards enhancing performance and accountability, but this needs to have greater involvement of clinicians and greater clarity in the pathways for risk escalation and responsibility of management.
      
      
   3. Health NZ Southern has implemented a patient navigator team to offer advice around alternative options available to patients. I suggested that Health NZ consider providing written information to patients about their options, which can be discussed with a navigator before a patient contacts their GP.

58. Dr C told HDC that subsequently, he retired from general practice.

Recommendations

Health NZ Southern

59. I recommend that Health NZ Southern:

1. 1. Apologise to Mr A’s family for the criticisms identified in this report. The apology is to be sent to HDC within three weeks of the date of this report, for forwarding to Mr B, on behalf of the family.
      
      
   2. Provide HDC with an update on the following, within three months of the date of this report:

1. 1. 1. Current waiting times for FSA in the SBCS, including any actions being taken if wait times are outside recommended clinical timeframes; and
      2. Staffing numbers within the service and recruitment effort.

1. 1. Consider undertaking an evaluation of the effectiveness of the patient navigator service, by an audit of service outcome measures, and provide HDC with a report, including any corrective actions implemented.  

Dr C

60. In my provisional opinion, I recommended that as per Dr Maplesden’s advice, Dr C present an anonymised case study of the report to his peers as an illustration of the importance of considering alternative diagnoses when there are features present atypical for the current working diagnosis. Dr Maplesden’s advice included a resource to assist in this recommendation.[19]
    
    
61. In response to my provisional opinion, Dr C confirmed that his peer group discussed Mr A’s case in 2021. Noting this, and that Dr C has retired from general practice, I consider that this recommendation has been met satisfactorily.
    
    
62. I recommend that Dr C apologise to Mr A’s family for the criticisms in this report. The apology is to be sent to HDC within three weeks of the date of this report, for forwarding to Mr B on behalf of the family.

Follow-up actions             

63. A copy of this report with details identifying the parties removed, except Health NZ Southern, the relevant hospitals, and the clinical advisor on this case, will be sent to Health NZ (national office) and Te Aho o Te Kahu|Cancer Control Agency and placed on the Health and Disability Commissioner website, www.hdc.org.nz, for educational purposes.

 

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