Creating a consumer-centred system Anthony Hill Health and Disability Commissioner 17 and 18 October HDC Medico-Legal Conference 2012

Overview Vision Consumer-centred culture -What is culture? -HDC jurisprudence -Transparency, seamless service, engagement Recurring themes Case studies Learnings

Cartwright Vision “[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 176

Cartwright Report “Administrators and health professionals need to listen to their patients, communicate with them, protect them, offer them the best health care within their resources, and bravely confront colleagues if standards slip.… Hospital Board (or Area Health Board) representatives should take greater responsibility for the patients’ welfare. They should ensure that the duty to safeguard the patients’ health is the administration’s paramount consideration at all times. “ Judge Cartwright, 1988, page 172 4

Bristol 2001 “Placing the safety of patients at the centre of the hospital’s agenda is the crucial first step towards creating and fostering a culture of safety. This means that safety must be everyone’s concern, not just that of the consultant, or the nurse in charge. …The safety of patients, the safety of their clinical care, is a matter for everyone, from the trust boardroom to the ward assistants…

Bristol 2001 contd …Safety requires leadership from the highest level of management. It requires constant vigilance. It should be considered in everything that the organization does. It is not a short term project but a commitment for 365 days a year. A culture of safety can only really be created when a concern for patients’ safety is embedded at every level of the organisation.” The Report of the Public Inquiry into children’s heart surgery at the Bristol Royal Infirmary 1984–1995 (Available at: inquiry.org.uk)

“We envisage a culture that is open, transparent, supportive and committed to learning; where doctors, nurses and all healthcare workers treat each other and their patients competently and with respect, where the patient’s interest is always paramount; and where patients and families are fully engaged in their care.” Leape et al 2009 An international perspective: 20 years on

“We envisage a culture centered on teamwork, grounded in mission and purpose, in which organisational managers and boards hold themselves accountable for safety and learning to improve.” Leape et al 2009

HDC vision: a consumer-centred system Consumer Centred System Engagement Seamless Service CultureTransparency

Overview Vision Consumer-centred culture – What is culture? – HDC jurisprudence – Transparency, seamless service, engagement Recurring themes Case studies Learnings

What is “culture”? Culture is the “values, beliefs, and perceptions that surround the behavior of people working in a hospital or a health system”. Singer el at “Relationship of safety climate and safety performance in hospitals” (2009) Culture exerts a powerful influence on people’s disposition to identify behaviours, assumptions or omissions that can lead to medical errors. Clancy “New Research Highlights the Role of Patient Safety and Safer Care” (2011)

HDC Jurisprudence Culture, and its impact on safety and quality, has often been a key consideration in HDC Opinions and beyond…

HDC Jurisprudence A number of HDC cases have talked about encouraging a culture within a hospital “where it is acceptable and even commonplace for questions to be asked, to and from any point in the hierarchy, at any time” (Opinion 09HDC01146, April 2011 ) Health care professionals have a duty to strongly advocate any concerns about a consumer’s health care, on behalf of the consumer (Opinion 09HDC01592, January 2012)

HDC Jurisprudence Culture within any health and disability system should be characterised by: Transparency (information and disclosure) Seamless service (systems and providers working together effectively) Engagement (listening to and advocating for the patient) Consumer Centred System Engagement Seamless Service CultureTransparency

“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, E et al “Error disclosure: a new domain for safety culture assessment” (2012 ) Patients want to know about errors, clinicians want to be truthful with their patients

Different and changing attitudes to transparency Transparency “Care givers and organisations that share information about errors with patients may also be likely to share the information internally.” Etchegaray, E et al “Error disclosure: a new domain for safety culture assessment” (2012 ) Views about patient safety and culture of error disclosure varies across grades and specialties. Etchegaray, E et al “Error disclosure: a new domain for safety culture assessment” (2012) Leaders of health care organisations can target education efforts to highlight the importance of, and rationale for, disclosure. Durani et al “Junior doctors and patient safety: evaluating knowledge, attitudes and perceptions of safety climate” (2012)

Seamless service Complexities of modern medicine demands that clinicians are no longer working as “cowboys” – working alone in their specialist filed Modern medicine is most effective when it functions like a system – “diverse people working together to direct their specialised capabilities toward common goals for patients. They are coordinated by design. They are pit crews.” Atul Gawande “Cowboys and Pitcrews” (2011) It is essential that different units within the same system communicate well Anthony Hill “Consumer-centered Care- Seamless Service Needed” 2011 “Pitcrews, not cowboys”

Seamless service “Recently, you might be interested to know, I met an actual cowboy. He described to me how cowboys do their job today, herding thousands of cattle. They have tightly organized teams, with everyone assigned specific positions and communicating with each other constantly. They have protocols and checklists for bad weather, emergencies, the inoculations they must dispense. Even the cowboys, it turns out, function like pit crews now. It may be time for us to join them.” Atul Gawande “Cowboys and Pitcrews” (2011) “Pitcrews, not cowboys”

Engagement “If health is on the table, then the patient and family must be at the table, every table, now.” Leape et al “Transforming healthcare: a safety imperative” (2009) There is increasing evidence that 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 “Improving cardiovascular risk management: a randomized control trial on the effect of a decision support tool for patients and physicians” (2007); O’Connor et al “Decision aids for people facing health treating or screening decisions (2003). An engaged consumer is an empowered consumer

Engagement “ Many doctors aspire to excellence in diagnosing disease. Far fewer, unfortunately aspire to the same standards of excellence in diagnosing what patients want… preference misdiagnoses are commonplace. In part, this is because doctors are rarely made aware that they have made a preference misdiagnosis. It is the silent misdiagnosis. Mulley, A., Trimble, C., Elwyn, G (2012) Patients’ preferences matter. Stop the silent misdiagnosis. The King’s Fund, (p.1).

Overview Vision Consumer-centred culture -What is culture? -HDC jurisprudence -Transparency, seamless service, engagement Recurring themes Case studies Learnings

Recurring themes Have a learning system Get the basics right Read the notes Ask the questions Talk with the patient Listen to the patient and the patient’s family Ensure continuity of care Take responsibility

Overview Vision Consumer-centred culture -What is culture? -HDC jurisprudence -Transparency, seamless service, engagement Recurring themes Case studies Learnings

Transparency: What information would a reasonable consumer expect to receive? Opinion 09HDC01565 Mr A was a fit and active 21 year old. In 2008, he started experiencing headaches during physical activities Mr A was diagnosed with Chiari malformation by consultant neurosurgeon, Dr E Two informed consent discussions took place

1st discussion surgical registrar/trainee, Dr F met with Mr A to explain the diagnosis further, discuss surgical options and risks, and the operative technique that would be used to perform the surgery 2nd discussion Dr E met with Mr A and explained the risks and benefits of the proposed surgery following initial discussions with Dr F At no time did Dr F or Dr E inform Mr A of how the surgical team would operate Mr A consented to surgery Transparency Opinion 09HDC01565

Surgery was performed by surgical registrars/trainees Dr G and Dr F, supervised by Dr E During the postoperative period, Mr A was found to be unresponsive and was not able to be resuscitated There was no evidence of surgical mishap, pulmonary embolism, excessive morphine administration, or pre-existing cardiac disease Transparency Opinion 09HDC01565

What information would a reasonable consumer, in Mr A’s circumstances, would expect to receive? Explanation of treatment options available An assessment of expected risks Side effects, benefits and costs of each option Involvement of trainee neurosurgeons? Transparency Opinion 09HDC01565

Dr E’s view: “[I] never gave the family the impression that I would personally be performing the procedure…the fact that [Dr F] did the informed consent would, I suggest, lead any reasonable patient to conclude that the operation would not entirely or even partially be performed by me.” Transparency Opinion 09HDC01565

My Opinion: “Mr A was anxious about the surgery and had doubts about whether to proceed, in light of the risks. The surgery was elective and not urgent. I consider that a reasonable consumer in Mr A’s circumstances…would expect to be told that the surgery was going to be undertaken by neurosurgical trainees, rather than a consultant neurosurgeon.” Transparency Opinion 09HDC01565

Seamless service: A tunnel vision approach to diagnosis Opinion 10HDC00703 In 2002, Ms A had a mastectomy for breast cancer. She was advised that she had an 80% risk of the cancer recurring Ms A also had a history of Chronic Regional Pain Syndrome (CRPS) In October 2007, Ms A experienced sudden onset of back pain without suffering any trauma

Ms A’s husband’s view about the DHB’s approach to his wife’s diagnosis: “This portrays a tunnel vision approach to diagnosis of my wife’s condition, one that once started, no- one wanted to change. Considering that my wife has 2 chronic illnesses, why did no-one apart from the ED doctor, think to check the spine for cancer[?] What is more disturbing is the impression that they would do the same again” (my emphasis) Seamless service Opinion 10HDC00703

My opinion: “…this is a case of different services within a district health board each considering a patient from their own specialist viewpoint, without regard to the bigger picture of the patient’s presentation and seeking to co- operate with one another to provide continuity of care to the patient. It is a case where clinicians should have continued to ask the pertinent questions while the patient was under their care. Instead what resulted was a pattern of suboptimal care, characterised by missed opportunities to diagnose Ms A’s metastatic bone disease.” Seamless service Opinion 10HDC00703

My opinion: DHB breached Right 4(1): Failing to adequately investigate Ms A’s back pain Right 4(5): The General Medical Team’s failure to communicate adequately with the Oncology Clinic Seamless service Opinion 10HDC00703

Engagement: Listening to the patient Opinion 10HDC00610 Ms A, Māori woman aged 52 Family history of lung cancer Smoked approximately 50 cigarettes per day for more than 20 years Had a long-standing dependency on benzodiazepine

Engagement Opinion 10HDC00610 Between June 2008 and February 2010, Ms A consulted Dr B on multiple occasions Complained of persistent coughing, chest and throat pain, fever and sweating, haemoptysis, shortness of breath and coughing up blood Dr B diagnosed Ms A with respiratory tract infections and acute pharyngitis Prescribed antibiotics and cough medicine No record of Dr B physically examining Ms A during this period

In February 2010, Ms A called Healthline for advice as the pain in her chest was unbearable Healthline immediately sent ambulance - admitted to hospital Chest X-ray revealed a large mass in lower right lung CT scan and lung biopsy confirmed primary lung cancer with extensive metastases in the liver, lung and mediastinum Ms A was referred to palliative care and died a few months later Engagement Opinion 10HDC00610

Ms A said that from her first visit with Dr B she was “made to feel like [she] was just a piece of rubbish to be tossed into the rubbish bin” Said Dr B labelled her a “drug dependent piece of rubbish” and told her on a number of occasions that she “depressed” him Dr B said he does not recall saying these things Engagement Opinion 10HDC00610

Ms A’s view: “Yes I have cancer and [Dr B] did not pick it up, but what is more important is the way he treated me. I was never listened to, never sent for tests, never examined or blood pressures taken, no [X]-rays just prescribed my medication and told to give up smoking. I had to sit through comments from [Dr B] such as ‘you depress me’. How would that make you feel [?] … This complaint is important for me as I do not want someone else to have to go through the same experience. Although I have an addiction for a prescription that has been provided to me from the medical profession for over 10 years[,] I still deserve health care and to be treated fairly.” Engagement Opinion 10HDC00610

Why did these adverse events happen? Where the two roads meet: individual responsibility and organisational responsibility.

Individual or System? Opinion 09HDC01505 Mrs A (aged 61) had a CVA in May 1995 and her gallbladder removed in 1996 In April 2009 presented to ED at secondary hospital Sudden severe right upper abdominal colicky pain, and chest pain radiating to shoulders, associated with sweating, pallor, nausea and vomiting ED medical officer ordered blood tests, liver function tests, and abdominal ultrasound scan Liver function tests normal. Sonographer reported "The gall bladder is not seen and may be contracted”

Dr C conducted "limited physical examination“ Dr C said scars indicative of cholecystectomy had faded significantly in 13 years - could not be seen Two volumes of notes: Dr C had Vol 2. Mrs A’s old notes, which contained the records of her 1996 surgery, were not provided to Dr C and he did not request them Mrs A’s memory “shocking”- thought she had previously had either kidney or gallbladder stones Individual or System? Opinion 09HDC01505

A pattern of errors. Dr C failed to: obtain full and accurate information about Mrs A’s previous medical history carry out an adequate pre-operative assessment provide adequate information to the woman prior to her consenting to undergo the surgery During the surgery, Dr C misread the anatomy Dr C found to have breached Rights 4(1), 4(4), 6(2) and 7(1) of the Code Individual or System? Opinion 09HDC01505

DHB had a duty to ensure that the right information reached the right person at the right time Incomplete set of Mrs A’s clinical records provided to clinical team DHB breached Right 4(1) of the Code by failing to take reasonable steps to alert Dr C to the existence of relevant clinical information, which adversely affected the care provided Individual or System? Opinion 09HDC01505

Overview Vision Consumer-centred culture -What is culture? -HDC jurisprudence -Transparency, seamless service, engagement Recurring themes Case studies Learnings

Systems “In any healthcare system, there are a series of layers of protections and people, which together operate to deliver seamless service to a patient. When any one or more of these layers do not operate optimally, the potential for that level to provide protection, or deliver services, is compromised” (Opinion 09HDC01883, 15 June 2012)

HDC vision: a consumer-centered system Consumer Centred System Engagement Seamless Service CultureTransparency