Patients as best teachers

1 March 2012

Listening to patients and their whānau is a learning experience nurses can’t afford to ignore. Nursing Review talks to Taima Campbell about her keynote address to last year’s Australian Nurse Educators Conference.

It took five long days for a family’s fears about their disabled daughter’s severe headache to be confirmed by a CT scan.

Taima Campbell opened her presentation with the story of 13-year-old Hine-mei –who has cerebral palsy and hydrocephalus – arriving at Starship hospital one Sunday with whānau concerned about her vomiting and head pain.

The family shared with ED staff their fears the failure of an internal cerebral shunt was causing her symptoms.

She was admitted for observation, and later that night, her profoundly deaf parents tried to express their increasing concern, but there were no after-hours sign language interpreters. The whānau also tried to tell staff the following night that the stiffening of her limbs was not usual. The stiffening worsened overnight and she was taken to theatre for an external shunt the next morning, but it was not until a few days later, when the headaches returned to an increasingly distressed Hine-mei, that a CT scan confirmed whānau concerns that the internal shunt was not working correctly and it was replaced. The scan also confirmed Hine-mei had suffered a minor stroke. She was discharged a week later.

Campbell says Hine-mei’s story brings home the importance of listening to whānau and paying attention to them as ‘experts’ about their own family’s health.

Stories like Hine-mei’s also put a human face to the national and international push to improve patient safety, experiences, and outcomes.

Part of a systematic approach to improving health systems is listening and learning from patients and their families.

Campbell says the Health and Disability Commission website is a good source of patient stories for teaching, and nurse educators at the conference indicated most used patient stories to teach.

However, some nurses are wary that HDC complaints sometimes boil down to “that person you didn’t get along with on that shift” or are used to apportion blame.

Campbell emphasises the message is not about blame but improving patients’ experience through listening and learning from all patients and their families.

“Yes it’s our [nurses’] work environment but hospitals are there for the patients,” reminds Campbell. “We’re here to actually provide a service and part of what people expect is some compassion”.

Compassion includes being listened to. Auckland District Health Board in October last year launched a new online patient experience survey, emailed out weekly to discharged patients, and initial results confirm that patients place a strong emphasis on clear communication.

Listening and learning is also important for when care goes wrong.

The second poignant story Campbell shared at the conference was told on video by the patient herself. Helen’s terminal cancer was undetected during surgery at Auckland DHB only to be eventually diagnosed months down the track when it was too late. She has since passed away.

Helen’s story brings home the impact of when the health system fails a patient, says Campbell.

Boards nationwide regularly report, respond, and review adverse events so lessons can be learned and safety improved. In the 2010-2011 year, boards reported that 377 patients were involved in – actual or potentially – preventable serious and sentinel adverse events.

Campbell says evidence shows that open disclosure – including being upfront, honest and listening to a patient or whanau following an adverse event – can be quite powerful for a patient and their family. As part of a systematic approach to patient safety, it helps organisations understand errors and prevent their repeat, as well as providing insight into the patient’s experience.

Campbell believes patients can be our best teachers. “There are some stories that we all need to listen to.”

Whānau and visitors – help or hindrance?

A bugbear of Campbell’s is the mixed message given to families when it comes to their supporting role and visiting hours.

“On the one hand, we talk about patient-centred care; for a lot of patients, part of their healing is having their family. On the other hand, we kick [families] out.”

Her presentation talked about not only valuing patient’s time but also whānau time, so families are not regarded as visitors to be ousted but instead supported as ‘partners in care’. “It’s quite a big cultural issue.” 

She recognises there are some practical issues involved and it is a lot easier to allow family open access when patients are in single rooms.

Auckland DHB doesn’t have a single policy, with family very much part of the care at Starship, while other hospital division’s policies are dependent on the type of patients and team preferences.

Learning from our best teachers

• Patient or family-centred care is about working with patients and their whānau rather than just doing to or for them

• Don’t label families as visitors ­– they are part of the health care team

• Welcome, encourage and support whānau presence and participation

• Measure what matters to patients/whānau

• Seek out and listen to patient stories.

Taima Campbell is director of nursing and midwifery at Auckland District Health Board.