- shared decision-making
the interaction process between the healthcare practitioner and the patient who come together to devise treatment plans. Shared decision-making becomes possible when there is mutual listening and shared dialogue.
- patient perspectives
the patient’s views, needs and wants as defined and understood by the patient him- or herself.
However, all attempts to empower patients, including SDM, can only ever partly succeed. We discuss the implications of this challenge for health practitioners and patients. We also examine how patients’ negative experiences of health care can be a problem not just for patients but also for nurses, allied health staff, managers and doctors, as such experiences compromise patient safety and person-centred care.
- person-centred care
care that acknowledges that both patients and professionals are people. Person-centred care is used to emphasise the importance of recognising that care is a human-to-human dynamic that may have different participants at its centre at different times, allowing for their different and potentially changing roles and contributions.
We begin to exemplify these issues using the story of a real patient we will call Sean, though Sean is not his real name. Sean is a well-educated, well-presented and polite person. He writes professionally, and has edited many reports about the Australian healthcare system describing the ideal of patient-centred care. In 2013, Sean attended a major Sydney hospital for a simple procedure. The operation was successful, but due to postoperative bleeding, Sean stayed two nights for observation. Afterwards he blogged about his experiences.
[W]hen I’m finally released, […] I call my partner to find he is already driving up and will pull up in front of the hospital to let me hop in. […] ‘Take me home,’ I say and break down sobbing, full upper body up and down, my hand smashed into my face, in a way I haven’t cried since Dad died.
Sean’s health care was medically exemplary. His procedure was successful; his subsequent care was careful, and no medical errors occurred. He did not have to endure difficult pain or physical distress. Yet Sean’s experience of health care was deeply distressing. He wrote on his blog:
I was shocked at the chasm between what is hoped for and what I experienced. At no time did I feel central to my care, a true subject rather than an object. I’m shocked at my level of unhappiness and complaint. … I found it so traumatic.
So why was the experience in hospital so difficult for him? Sean’s blog post reveals a range of experiences common to patients like himself, including:
- lack of information about what has happened, is happening and will happen next;
- loss of control, including not being heard by hospital staff;
- the need to remain friendly with healthcare professionals so as not to jeopardise their goodwill and care.
Reflecting on his traumatic experience with a simple procedure, Sean wrote in his blog:
As a well-educated, articulate and relatively confident individual, I would have imagined that I’d fare well in the health system, that I could use whatever skills, charm and education built up over my years to create some level of positive human interaction and be satisfied with the care I received. That was not the case. … So many people I know … have undergone major operations requiring much bigger procedures and longer stays in the hospital. How are they managing?
- patient-centred care
care that is structured to benefit the patient. Patient-centred care is opposed to profession-centred and service-centred care. The latter are structured to benefit those working in the health system, potentially at the expense of the patient.
And, we can ask, what about the patients who are not as articulate or confident as Sean?
In this chapter, we explore what is common about the experiences of patients, and address strategies that may help them. We also examine how these experiences can be a problem for nurses and doctors as well as patients, by compromising patient safety and person-centred care.
Consider the following story, again of a well-educated, articulate patient: Joe. Now in his forties, Joe has had kidney failure since his youth, necessitating in-hospital haemodialysis (cleaning of the blood). So, unlike Sean who had never been to hospital before, Joe is very experienced with hospitals, and is very knowledgeable about his condition. To receive haemodialysis as a treatment for kidney failure, patients need a fistula, created by joining a vein and an artery to form an enlarged blood vessel able to sustain ongoing access to the blood. Patients have a limited number of locations where a fistula can be created, so a functioning fistula must be carefully protected.
Joe was told by his vascular surgeon that, if he had trouble with his fistula, he should go to emergency and tell the triage nurses to call the vascular surgeon on duty. Joe’s vascular surgeon assured him that the nurses would understand the urgent care required. So when Joe noticed a problem with his fistula, that is what he did. But instead of calling a vascular surgeon, the triage nurses told Joe to sit down to wait to be seen by one of the emergency doctors. ‘This fistula needs to be seen by a vascular surgeon within about two hours,’ he told the nurses. ‘Go and sit down,’ he was told. Joe lost the fistula, compromising his ability to receive life-sustaining dialysis. He required the expensive and painful construction of a new fistula. Even though Joe had information about what was happening, he couldn’t make the nurses listen.
Analysis and reflection
Let’s now examine what happened to Joe in somewhat more detail. There are four main problems affecting his care: a lack of information, a loss of control, not being heard, and a greater need for patients to be friendly and cooperative. We discuss each of these in turn.
Lack of information
Joe clearly wanted information about what was happening, and he was given little. Though in the past patients may have been more passive in conversations about their care, these days more patients want to know what is happening to them and, especially, most patients want to know when and how their illness or condition will be fixed. Patients may even expect that healthcare professionals will be able to tell patients ‘the answers’ quite quickly. Often this can’t be done. Diagnosis may not be the straightforward affair that patients might imagine, and it can require tests and involve different specialists. Moreover, care often involves waiting and responding to the body as it responds to treatments, and the speed and content of such responses cannot be determined or predicted accurately. So while it is reasonable for patients to want to understand their situation, it is not always possible to give them clear ‘answers’.
Instead, it is important for health professionals to be clear about the processes involved in their care: to explain how things work. If patients ask for information, provide it, even if that means saying, ‘I don’t know yet’, or ‘I am not able to talk to you about that. You need to ask the doctor when they come.’ Such answers demonstrate that there are processes for information provision in your workplace, allowing the patient to understand them and work within them. Even if you are unable to provide solid or clear answers, explanations about how things work enable you to connect with the patient and respect their need for information. Explanations further allow patients to think through their situation (Purtilo & Haddad, 2007). Importantly, too, encourage patients to take their questions further and alert them to opportunities to do so as they arise. We will return to this last point later.
Loss of control
Joe experienced a loss of control due to his illness. Patients such as Joe can no longer do everything they want to due to their condition. Any good health professional textbook explains how difficult such a change can be: changing one’s abilities, ruining one’s plans, maybe even changing one’s life course. This includes a potential loss of physical and social function, stigmatisation, changed roles and identity, financial loss and loss of opportunities, some of which may be traumatic, even if others may represent a welcome reduction in duties and demands (Anderson & Bury, 1988; Purtilo & Haddad, 2007).
When a patient enters a hospital or goes to see a doctor, however, there is another level at which they lose control, involving a whole new set of lost choices. First and foremost, they lose control over time; they can’t decide when their care will commence or finish – that is at the discretion of doctors. They may notice others being seen before them, adding to the frustration of waiting. Then, if they are admitted into hospital, they must remove their clothing; they cannot choose what or when to eat or drink, and they may not be able to move freely due to catheters and cannulas. And they cannot decide what their treatments will be – even in the context of excellent patient-centred care. That is, a patient cannot get a particular treatment without a doctor agreeing to it and prescribing it. If they are given choices in their care, they often don’t know what the different options mean, and therefore can’t really compare outcomes. Moreover, all choices of treatment may appear equally unsavoury to the recipient, making their choice into one that feels forced because they cannot choose to escape the situation painlessly.
There is little that any individual healthcare professional can do to restore all these levels of a patient’s lost control in the short term. Beyond helping to ameliorate the patient’s illness or condition, the best strategies to use in everyday interactions with patients who are dealing with loss of control are acknowledgement and connection, and giving them things they can control (Purtilo & Haddad, 2007). For these reasons, as a health professional you should agree and acknowledge the patient’s frustration or loss when they complain about their lost choices. You might sometimes even be responsible yourself and could acknowledge that, for instance, long waiting times are a problem, and you could apologise for them.
But empathy may not enable the professional to achieve everything for the patient. Therefore, you should also help a patient regain some control by showing them how to assist with or manage their own care. This can be very simple at times. Explain, for instance, how to care for their cannula, by not moving the hand their cannula is in. Explain what is required for them to be discharged, so that they can work towards that goal – for instance, by providing usable samples, by walking, by passing tests, and so forth. All this can contribute to a patient’s sense of knowing what is happening to them, and having a degree of control over their care.
Not being heard
When Joe showed the triage nurses his failing fistula, they apparently did not recognise the urgency of the situation, nor did they appear to listen to his requests for urgent help. Perhaps they did call for a vascular surgeon, but the surgeon did not come. What matters, ultimately, is that Joe felt that he was not heard. And, significantly, the fistula failed. When a patient knows that they lack control, and feels that they are not being heard, it is natural for them to feel frightened, angry and depressed. Moreover, patients sometimes know that they will have to return to this healthcare facility again, so the experience of not being heard creates fear not only for a present single situation, but potentially a long-term fear of similar, future situations. Patients begin to feel unsafe in the long term.
All this means we need to listen to patients, and ‘hear’ the cues and information they may be able to provide. We need to take patients’ concerns and wishes seriously. If Joe’s triage nurses did call a vascular surgeon, they should have told Joe about it. We also need to show that we are listening (see Chapter 3). If the nurses had explicitly acknowledged Joe’s request for a vascular surgeon, he might not have been so upset about having been treated by an emergency doctor. Then he might still feel safe to go to emergency with other problems, because he might feel that at least frontline staff there would respond respectfully and knowledgeably.
The need for patients to be friendly and cooperative
We have discussed how patients lack control over their situation and the processes which might help them. For the reasons described earlier, healthcare professionals are partly in control. And research shows that healthcare professionals provide different standards of care to patients they like, compared to patients they don’t like: unpopular patients wait longer, receive less information, and experience interactions with fewer friendly elements such as jokes, smiles or chats (Stockwell, 1984). Patients know that unpopular patients receive different, substandard care (Werner & Malterud, 2003). This knowledge may affect how all patients interact with healthcare staff in two ways (Braun Curtin & Mapes, 2001; Godbold, 2013):
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
