Chapter 5

Safety from the patient’s perspective (Mellin-Olsen)

The Helsinki Declaration on Patient Safety in Anaesthesiology highlights the contribution of all actors in health to improve patient safety.¹ In its Heads of Agreements, it states that ‘Patients have an important role to play in their safe care which they should be educated about and given opportunities to provide feedback to further improve the process for others’. This statement seems to state the obvious. However, the reality is still different.

In recent years, the paternalistic ‘the doctor knows best’ attitude has changed into more of an equal partnership between healthcare professionals and patients. The Norwegian author Garborg¹⁹⁸ is credited to have said that A sick man knows much of which a healthy man has no clue. Yet, everybody who has been involved in health care for some time knows that there is still some way to go until we have utilised patients’ potential to help us provide safe medical care.

There will always be some level of unequal relationship between healthcare providers and patients. Patients must rely on the competence of the healthcare system, the hospital, the physicians, the nurses, the pharma and MedTech industry, and so on, to help them. Although they are invited to make ‘informed’ decisions regarding themselves when possible, they will still need to rely on advice from experts.

As anaesthesiologists, we are all aware that we are safeguarding the best interests of our patients when they are at their most vulnerable. Patients need to let go of their autonomy and submit themselves to our control when they undergo anaesthetic and surgical procedures, when we care for them in ICUs or in critical emergency medical situations, and in some pain procedures. Such submission significant trust.

This imbalance also requires that the providers invite and encourage active involvement by patients. Yet not all patients are equally able to do that, as demonstrated by Doherty and Stavropoulou.¹⁷² They found that potential barriers for patients’ involvement depended on illness severity, cognitive characteristics (including language barriers), poor physician–patient communication and organisational factors (including safety culture).

Barriers for patient involvement

• (1) For illness severity, there is not much we can do, except trying to optimise the situation. But we can influence the other elements.
• (2) Cognitive characteristics (including language barriers): here, there is a potential to improve; for instance using professional interpreters for patients with language barriers. Family members, particularly children, should not be used as interpreters.¹⁹⁹ Healthcare professionals have to learn how to address patients and their families in lay terms and support them in this learning process.
• (3) Poor physician–patient communication affects not only patient safety, but also the choice of appropriate treatment. Gone are the days when most patients listened obediently to doctors’ orders, today’s physicians more often act as health coaches or advisers to assist patients to make informed decisions on treatment strategies.²⁰⁰ Patients who want decisions to be taken for them still exist, and it is our duty to identify them. The ‘Four Habits’ model was launched at Kaiser Permanente as early as 1999.²⁰¹ These habits are simple and seem self-evident when one is aware of them. If done correctly and consistently, the Four Habits Model will deepen trust and improve decision making in health care, which in turn will result in better health outcomes, patient satisfaction and improved patient safety (https://www.careinnovations.org/wp-content/uploads/2016/03/four-habits-monograph_new-agenda.pdf).
  • (a) The first habit is ‘Invest in the beginning’. A negative first impression is hard to change. A friendly handshake, eye contact and an appreciative personal comment work wonders for trust. On the contrary, it still is far too common that the physician has not read the patient’s chart before the consultation. The patients should be allowed to speak freely about his condition and concerns. Ospina et al.²⁰² found that in only 20% of encounters in speciality care did clinicians elicit the patient’s agenda. The clinician interrupted the patient at a median of 11 s, yet uninterrupted patients took a median of 6 s to state their concern. If the physician is able to elicit the concern in the beginning, then it is easier to plan the consultation without missing the most important issue.
  • (b) Next is ‘Elicit the Patient’s Perspective’. There are three elements of this habit – understand how the patient assesses the condition, his expectations, and how his problems impact his life. Physicians have their own understanding and preconceptions, which might be very different from a patient’s point of view. In addition, we might be in for surprises if we ask ‘what matters to you’ rather than ‘what is the matter with you’.^200,203 Patients’ trust and satisfaction is dependant not only on the outcome of treatment, but also on the perception of being ‘seen’ and respected.
  • (c) The third habit is ‘Demonstrate Empathy’. The physician should catch the small hints the patient provides regarding his worries. Support and encouragement are important, but more so is that the patient experiences that the doctor tries to understand and appreciates the patient’s situation.²⁰⁴ We are not all good at this. In a study of consultations with lung cancer patients and their doctors, the patients presented 384 empathic opportunities, but the doctors responded with empathy only in 10% of the cases.²⁰⁵ Empathy is not to say that ‘I know how you feel’, but rather to express ‘I can see that this distresses you’. Showing empathy can prevent unnecessary visits and treatments. It would also uncover otherwise missed diagnoses, in addition to leading to greater trust and adherence to our recommendations.²⁰⁶
  • (d) Finally, the fourth habit is ‘Invest in the End’. The clinician should inform the patients and encourage them to participate in the decision process leading to a common plan. The doctor should give reasons for the recommendations and ensure that the patient understands and agrees with that plan. One problem through the whole patient meeting, and particularly towards the end, is when the doctor is looking at his computer screen, ordering lab tests, writing his findings and so on. Explaining to the patient what he is doing can mitigate that problem.
• (4) Organisational factors (including safety culture): The way doctors meet patients does not happen in a vacuum. We depend on the work environment and we are affected by leadership priorities. If leadership rewards behaviour to increase ‘number of patients treated’ more than behaviour prioritising delivering safe care, then that will affect our attitude. Patient outcome suffer when hospital boards do not make safety a top priority.²⁰⁷ Patients expect to be treated by personnel that concentrate on them. Personnel should not be distracted by fatigue, unhealthy working conditions and other ‘external’ factors. Time pressure could also be a factor for less than optimal patient involvement.

Patients not only have a right, but also should actively be encouraged to speak up (see also Chapter 3) when they see that something is not right. As the Berwick report stated in 2013, based on the Mid Staffordshire scandal in the United Kingdom: Involvement means having the patient voice heard at every level of the service, even when that voice is a whisper. Patients see things we do not see. By being integral parts of the ‘system’, we are socialised into getting blind spots.²⁰⁸ To elicit these blind spots, we should encourage patients to give us feedback on errors and mishaps as well as what is ‘just potential for improved service’. One example is the MedStar Health platform ‘We want to know’, which encourages patients to give feedback.^209,210 Factors that prevent patients from feeding back if not encouraged include fear that voicing concerns will negatively impact their own care. Patients do not want healthcare providers to be blamed, they are focused on getting well, they want to focus on the future. Patients often do not know how to report and sometimes expect that reporting will not help. Yet, input from patients has been shown to improve healthcare personnel’s adherence to safety routines, for instance regarding hand hygiene.²¹¹ There are also other useful initiatives on a higher level to encourage feedback from patients, like ‘the Care Opinion’ in the United Kingdom, Australia and New Zealand (https://www.careopinion.org.uk/info/about). Such initiatives provide opportunities for improvement but must be followed up by optimisation to be of real value.

Patients also have a role in setting the research agenda, which is often driven by researchers’ curiosity and interests. These might not overlap with what patients see as important. A consequence could be that relevant questions are not addressed, and areas of potentially useful research are neglected. Therefore, efforts like the ‘James Lind Alliance’ (http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/) have been established, funded by the National Institute for Health Research in the United Kingdom. This Alliance offers a partnership between all stakeholders including patients and organisations to set research priorities (http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/).

Patients and relatives are often placed in the same category. Relatives often are an important resource and support for the patient. In situations where patients are unable to speak up for themselves, their relatives will often speak on their behalf. Health personnel can turn to families to understand what would be in the best interest of the patients. Yet, we must respect privacy rules. People do not always share all their personal and private information with their relatives, and we must tread carefully to not reveal information that a patient has kept to himself.

When the worst has happened, and a patient has been harmed, we have a duty to the involved persons to deal with the situation in an appropriate way. This includes open disclosure and learning from the incident to minimise the risk of the same incident being repeated. Vincent et al. looked into reasons why people sued doctors.²¹² The most important reasons stated were not revenge and monetary compensation, but factors like preventing an incident from happening again. Patients wanted an explanation, to make the doctors realise what they had done and to admit that an error had occurred. Sometimes, doctors think it is better not to disclose everything, as it might create more ‘noise’: this could be defensive or protective behaviour, sometimes with good intentions. In such cases one should use the ‘Australian open disclosure substitution test’ described in the world’s first nationwide open disclosure standard in 2003, which is now replaced by the 2013 Standard (https://www.safetyandquality.gov.au/sites/default/files/migrated/Australian-Open-Disclosure-Framework-Feb-2014.pdf). The test is simple: ‘Imagine the last time something went really, really wrong. Imagine that it concerned your wife, child, mother, father instead. Imagine the conversation you would have wanted to have with the doctor, the team and the management’.

Patients and relatives understand that there is no such thing as a perfect system. What they do not understand is when providers and the system try to hide the truth, do not assume responsibility and do not use the incidents that have happened to learn so that the same thing will not occur again. People sense if something is being hidden from them. They do not like that health personnel blame each other without assuming responsibility. A sincere apology does not mean taking blame. Programmes like the CANDOR (Communication and Optimal Resolution) have proven useful to improve patient safety and satisfaction, as well as reducing legal actions and have led to economic benefit.²¹³ The US AHRQ states that the key learnings of the CANDOR Toolkit are to engage patients and families in disclosure communication following adverse events, to partner with patients and families on safety solutions, maintain trust with patients and families after harm events, implement a care for the caregiver programme for providers involved in adverse events, analyse an unexpected outcome to learn from it and prevent future adverse events, establish a resolution process for the organisation, enhance joy and meaning for care team members and to provide safer care to everyone (https://www.ahrq.gov/patient-safety/capacity/candor/modules.html).

Patients and healthcare providers share the same goal – that no patient is harmed under our care. Patients want to be our partners in patient safety and can contribute with insights we do not have. One of the initiatives to bring all stakeholders together for a common goal is the Patient Safety Movement Foundation, which brings together all stakeholders. One of their Actionable Patient Safety Solutions is ‘Patient and Family Engagement’ (https://patientsafetymovement.org/actionable-solutions/challenge-solutions/person-and-family-engagement/). Such initiatives should be utilised by policy makers to empower us together to reach our common goal – zero preventable harm in health care.

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