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20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

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Page 1: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

20 Years Strong: The Commissioner, the

Code and Informed Consumers

Anthony HillHealth and Disability Commissioner

HDC Conference9 March 2015

Page 2: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

• Cartwright Report (1988)• Health and Disability Commissioner Act 1994• The Code of Health and Disability Services

Consumers’ Rights (1996)• Former Commissioners– Robyn Stent (1994 – 1999)– Ron Paterson (2000 – 2010)

• Advocacy Services (1995)• Consumer Advisory Group (2003)• Mental Health Commissioner (2012)

20 Years Strong

Page 3: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Cartwright 1988

“[I] advocate a system which will encourage better communication between patient and doctor, allow for structured negotiation and mediation, and raise awareness of patients’ medical, cultural and family needs. The focus of attention must shift from the doctor to the patient.”

Judge Cartwright (1988)

Page 4: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

HDC VisionConsumers at the Centre

of Services

Consumer Centred System

Engagement

Seamless Service

Culture

Transparency

Page 5: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Effecting Change

• Local change• Sector change• Influencing ideology

Page 6: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Complaints per year

2006/2007 2007/2008 2008/2009 2009/2010 2010/2011 2011/2012 2012/2013 2013/2014 1,000

1,100

1,200

1,300

1,400

1,500

1,600

1,700

1,800

1,900

Page 7: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

1380

44

29

8

1551

60

42

16

1901

115

79

23

2011-2012 2012-2013 2013-2014

Complaint statistics: at a glance

Complaints Closed

Investigations

Breach opinions

Referrals to Director of Proceedings

Page 8: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Key themes from the cases

• Autonomy and informed consent

• Open disclosure• Team work• Consumer-centred culture

Page 9: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Autonomy and informed

consumers• Paradigm shift

Twenty years ago there was a view that:“..the notion of informed consent was ridiculous and should be abandoned.” “Patients would suffer data overload and some would die as a consequence of delays in emergency treatment due to informed consent requirements.”

Page 10: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Autonomy and informed consent

“Having the patient voice heard at every level of the service, even when that voice is a whisper”

Berwick (2013)

“…involving patients in decision making has positive effects in terms of patient satisfaction, adherence to treatment regimes and even their health outcomes.”

Van Steenkiste et al (2007)

Page 11: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Autonomy and informed consent

13HDC00475

• Mr A (14 years old) was admitted to hospital to undergo surgical treatment for cancer, followed by chemotherapy treatment.

• The morning of his first chemotherapy treatment, on-call paediatric oncologist Dr B met with Mr A and his parents.

• Dr B mentioned the potential impact of chemotherapy on fertility, but did not emphasise it. The discussion focussed mainly on the potential adverse effects of the chemotherapy drugs.

Page 12: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Autonomy and informed consent

• Mr A and his parents were provided with written information about the chemotherapy drugs, but those sheets did not refer to the potential impact on fertility.

• Mr A underwent his first chemotherapy treatment that afternoon.

• The next day, a nurse mentioned fertility to Mr A and his parents when completing a routine checklist.

• Dr B met with Mr A and his parents the next day to discuss fertility and the option of storing a sperm sample. Part of this discussion took place in private with Mr A, without his parents being present. 

Page 13: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Autonomy and informed consent

Findings – Dr B

Adverse Comment• Failure to provide information about risks

regarding fertility to Mr A prior to his first chemotherapy treatment.

• Decision to discuss, in the absence of Mr A's parents, the option of Mr A providing a sperm sample. 

Page 14: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Autonomy and informed consent

Findings – DHBBreach of Right 6(1)• Failure to have adequate mechanisms in

place to ensure the provision of fertility information and treatment options to consumers prior to undertaking chemotherapy treatment.

Page 15: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Autonomy and informed consent

“While I appreciate that in some cases it may be appropriate for a provider to have such conversations with a young patient without family members present, in the circumstances of this case I consider that the decision by Dr B was unwise. Dr B should have ascertained the suitability of having such a discussion with Mr A, in the absence of his parents, who were also his support persons, prior to engaging in that discussion.”

Page 16: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Effecting Change

• Local change– DHB review of policies, information sheets

and practice• Sector change– Recommendations circulated to all DHBs in

the DHB report– The Commissioner encouraged all providers

to adopt the National Guidelines regarding fertility preservation

• Influencing ideology– Autonomy and informed consent

Page 17: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Informed Consumers

• Current Issues– Right 7(4)

• Recent media interest

• Strong views on both sides of the debate about whether the Code should be amended

• Public consultation process to take place

– Informed consent and students

Page 18: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Open Disclosure

“Disclosure is a professional obligation…and is a marker of patient-centred care. It also reflects the transparency of an organisation, which is believed to be a key component of safe organisations.”

Etchegaray et al (2012)

Page 19: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Open Disclosure12HDC00437

• Mr A was assessed by Dr C as requiring a root canal

• During the treatment, Dr C became aware that one of the fine instruments used had separated (broken off) in Mr A's root canal.

• Dr C did not tell Mr A about the separated instrument, nor did he document this in the clinical records.

Page 20: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Open Disclosure• Two years later, Dr C undertook re-treatment of the

root canal. Mr A continued to experience pain, and further treatment was carried out.

• Dr C did not tell Mr A about the reason for the re-treatment, the options available, or the risks associated with each option, including his skill in this area.

• A year after re-treatment, part of Mr A's tooth broke away. In light of this, Mr A sought a second opinion from another dentist, Dr E.

• Dr E advised Mr A that an instrument had broken off in the root canal, and that the root had been widened and damaged.

Page 21: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Open DisclosureFindings – Dr BBreach of Right 6(1)(g)• Failure to disclose that an instrument had

separated during the root canal treatment.

Breach of Right 6(1)(b)• Failure to fully inform Mr A about the

reasons for his re-treatment, the treatment options available to him, and the risks, side effects, benefits and costs of those options, including Dr C's skills in the area.

Page 22: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Open Disclosure

Breach of Right 7(1)• Failure to obtain Mr A's informed consent

for the re-treatment.

Breach 4(2)• Failure to comply with the professional

responsibility to keep proper records

Dr C was referred to the Director of Proceedings.

Page 23: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

“When Dr C became aware of the separated instrument during the appointment…he had a responsibility to disclose this to Mr A. Failing to disclose the fact that an instrument had separated meant that Mr A was unable to properly consider his options and the risks of those options.”

Open Disclosure

Page 24: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Effecting Change

• Local change– Training on communication with

patients– Competence review

• Sector change– Dissemination of learnings through

publication of decision• Influencing ideology– Open disclosure

Page 25: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Accountability

• This case– Breach– Apology from Dr C–HPDT proceedings

• Generally–What is accountability?–How should it operate?

Page 26: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Teamwork

“Although healthcare units may operate largely independently, it is their combined product that determines a patient’s care while hospitalised”

Singer et al (2013)

Page 27: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

• 78-year-old woman referred to hospital by GP querying possible hernia

• Woman reviewed by junior medical registrar and consultant. Registrar did not mention possibility of hernia. Consultant did not read referral. Provisional diagnosis of abdominal malignancy – no differential diagnosis recorded

Teamwork10HDC00855

Page 28: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

• Following day, registrar reviewed the woman and spoke to GP. GP again queried a diagnosis of hernia. Registrar did not inform consultant of GP’s concerns

• Woman went 27 hours without further medical review

• Woman deteriorated and died – at emergency surgery, found to have incarcerated femoral hernia

Teamwork

Page 29: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Findings – the DHBBreach of Right 4(1)• Failed in its duty to provide an appropriate standard

of care with regard to the nursing care and consultant reviews of Mrs A.

Breach of Right 4(5)• Poor documentation and poor communication and

handover by hospital staff resulted in a failure to ensure the quality and continuity of services provided to Mrs A.

Teamwork

Page 30: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Findings – the consultantBreach of Right 4(1)

– Did not take reasonable steps to ensure that he was adequately informed about Mrs A's history

– Failed to recognise a hernia with bowel obstruction as a differential diagnosis

Findings – the registrarBreach of Right 4(1) and 4(2)

– Failed to document an accurate history– Failed to appropriately relay to his consultant Mrs A's

history and the GP's concerns of a possible hernia– Failed to communicate adequately with GP and Mrs A's

family

Teamwork

Page 31: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

“Mrs A received care from a number of nurses and doctors while in the APU and the surgical ward. In my opinion, her care did not meet expectations of seamless team-based secondary hospital care. Communication processes between the staff involved in Mrs A's care appear inconsistent and created risk…”

Teamwork

Page 32: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Effecting Change• Local change– Review early warning system protocols– Provide education to junior staff

regarding contacting senior clinicians– Review off-site clinic commitments– Review communication requirements

• Sector change– Decision sent to DHB shared services

• Influencing ideology– Importance of connections between

primary and secondary care

Page 33: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Consumer-centred culture

“In the end, culture will trump rules, standards and control strategies every single time, and achieving a vastly safer NHS will depend far more on major cultural change than on a new regulatory regime.”

Robert Francis QC (2013)

Page 34: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

• Mrs A went into labour, and presented to the public hospital to be assessed by her midwife.

• Locum obstetrician, Dr C, was asked to review Mrs A because of failure to progress.

• Epidural inserted, and labour augmented with syntocinon.

• Prolonged deceleration of FHR observed. Still no progress.

• Decision to proceed to emergency C-section.

Consumer-centred culture13HDC00515

Page 35: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

• The anaesthetist told Mrs A he would top up her epidural throughout the operation as needed.

• Mrs A said that the anaesthetist “joked around” and she found it hard to tell when he was being serious.

• The anaesthetist conducted an “ice test”, and Mrs A told him she could feel the cold. The anaesthetist advised the obstetrician that she could begin.

• When the obstetrician entered the peritoneal cavity, Mrs A complained of pain. The anaesthetist assured the obstetrician that she could continue the operation.

Consumer-centred culture

Page 36: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

• As the operation continued, Mrs A complained of pain and began lifting her knees. The obstetrician asked the nurses to hold down Mrs A’s legs.

• Mrs A again voiced her pain, but the anaesthetist told her she was not feeling pain, just pressure. He told her she could not have more pain relief unless they “put her under”.

• Mrs A continued to complain of pain during suturing, but the anaesthetist declined to administer more pain relief, commenting: “It will be over soon”.

Consumer-centred culture

Page 37: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Findings – The anaesthetistBreach of Right 4(1)• Failure to ensure Mrs A received adequate

anaesthesia/analgesia prior to and during the C-section.

Breach of Right 4(2)• Lack of sensitivity in his communications with

Mrs A, and a striking lack of empathy.Breach of Right 6(1)(b)• Failure to provide Mrs A with information about

her options.

Referred to Director of Proceedings

Consumer-centred culture

Page 38: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Findings – The obstetricianBreach of Right 4(1)• Failing to speak & act with more authority

when she thought Mrs A was feeling pain.• Continuing to operate on Mrs A after

realising that she was in pain.

Consumer-centred culture

Page 39: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Consumer-centred culture

“The patient comes first…I have previously commented on the need for clinicians to advocate on behalf of patients, and for institutional providers to normalise a culture where such actions are accepted and expected.”

Page 40: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Effecting Change• Local change– Review policies for locum orientation and

epidural anaesthesia– Include in training and induction “that the

practice of asking questions and reporting of concerns is expected and accepted from all members of the multidisciplinary team.”

• Sector change– Case learnings included in DHB report sent

to all DHBs• Influencing ideology– consumer centred care

Page 41: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Learning from complaints

• Individual complaints• Patterns and trends– DHB reports– Primary care cancer diagnosis– All doctor complaints– Rest home complaints–Medication errors

Page 42: 20 Years Strong: The Commissioner, the Code and Informed Consumers Anthony Hill Health and Disability Commissioner HDC Conference 9 March 2015

Consumer Centred System

Engagement

Seamless ServiceCulture

Transparency

“…among the most valuable sources of information are the reports and voices of patients, carers and staff.”

Berwick 2013