- end-of-life care
care provided when a person and their family are living with a life-limiting illness and its effects.
A focus on end-of-life communication is important for other reasons too. First, the biggest number of users of Western healthcare services are people with chronic diseases (75%), and most present with more than one disease: they have ‘multiple co-morbidities’. Many of these patients die from their chronic illnesses; this means that their care is hugely complex: they may need to draw on the expertise of more than one service or specialty at the same time. In addition, most of these patients (around 70%) will die in a healthcare institution (Seale, 2000). This means that, unless they are looked after at home by relatives, people with a life-limiting illness will spend most of their last days in an acute care hospital, not in a hospice (a service that specialises in care for the dying) or under the care of specialist palliative care services (Palliative Care Australia, 2010, p. 14).
Introduction
Many healthcare professionals, academics and policy-makers agree that Western healthcare systems are not sensitive to the needs of dying patients and their families. The reasons for this are many and varied. In this chapter we begin by exploring some of the factors (organisational, educational, and personal) that contribute to creating these unmet needs. Assisted by practice examples, we look at patients’ and families’ experiences of end-of-life care and the impact poor communication can have on people’s safety. The practice examples help us to identify communication strategies that might help patients and families to feel safer while under our care.
Let us first consider some of the factors that have a negative influence on communication at the end of life.
Organisational factors
Western healthcare systems tend to focus on treating a person’s disease and curing it, rather than caring for the person as a person. Of course, cure is important, but as healthcare professionals we need to integrate curing with caring. The overarching concerns of the healthcare system, however, are often centred on hospital efficiency (budgets). Systems and services are under pressure to prioritise budgets and targets, making it very difficult for healthcare professionals to care in the way that they would choose (Benner, Hooper & Kyriakididis, 1999). What is more concerning, however, is that the healthcare priority setting is not always sensitive to the needs and wants of patients and their families. This is the case even when these needs and wants emphasise simpler care and cheaper solutions. Only recently have the priorities of patients and consumers begun to be taken into account (Coulter, 2011).
By and large, hospital care tends to be organised around the priorities of ‘disease’-focused medical specialties. This way of structuring health care may meet the needs of a person with a single disease or medical problem, but it does not meet the needs of people with multiple morbidities. As noted above, most users of our healthcare system are people with multiple morbidities (Barnett et al., 2012). Given that, the ‘single-disease’ focus of most healthcare services is not in synchronicity with the needs of the majority of patients. The single-disease focus means that most healthcare services and medical specialties operate in relative isolation from one another, and lack systematic approaches to collaboration and cooperation. This produces fragmentation of health care in general, and in end-of-life care in particular (Australian Commission for Safety and Quality in Healthcare, 2013; Curtis & Shannon, 2006; Ferrell, 2006; Sorensen & Iedema, 2007).
Compounding the single-disease structure of the healthcare system is that our hospital buildings are usually built with a focus on accommodating and reinforcing that single-disease structure of specialty clinical interventions. In reality, patients and families are rarely asked to contribute to the design of new hospital buildings; this serves to perpetuate the status quo in healthcare architecture and interior design. One exception and an example that you may wish to follow up on is that of the children’s hospital in Brisbane. The design and development of this new hospital involved children and their families from the outset and is centred on caring for the whole family (Queensland Government, 2014).
For the most part, however, this single-disease approach to health service structure and architectural and interior design means that hospitals are very foreign worlds for patients and families. This is particularly true for dying patients whose care is out of step with most of the acute care that goes on in hospitals. Thus, hospitals are full of threatening medical symbols for those whose disease is chronic and their life limited: white walls everywhere, corridors and consultation rooms full of machines and technology, and people in white coats in a hurry (Radley & Taylor, 2003). Another problem with many healthcare environments is finding suitably private spaces where we can have end-of-life conversations. Too often, and sadly, such conversations are conducted in busy wards or in corridors. Along with finding themselves in a strange and threatening environment, patients and families are also under significant stress due to their suffering, impending loss, and grief. Despite all of this, we as healthcare professionals often expect ourselves and others to make reasoned and rational end-of-life decisions (Hillman & Chen, 2009).
Furthermore, it is not unusual for older people to be moved frequently between home, nursing homes and hospitals; and within the hospital from ward to ward where juggling of acute beds to meet demand takes precedence over the comfort of those receiving end-of-life care. Being moved around beds, rooms or institutions can be extremely stressful for patients generally, and for dying patients it can be traumatic (Burge et al., 2006). In addition, being in hospital means being disconnected from home and from what is most familiar (Evans et al., 2006). As a result, patients often feel unsafe in hospitals and care institutions generally.
Clinical factors
There are four critical problems associated with what clinicians know (or don’t know) about patients who are dying. The first is that many healthcare professionals have difficulty in diagnosing dying as such (Christakis, 1999). That is, it remains immensely challenging to predict the approach and speed of death. The phrase ‘diagnosing dying’ presumes that diagnosis is possible, but diagnosing dying is in fact very challenging. Many studies have sought to devise checklists but researchers have had to acknowledge that the onset of dying is a complex and unpredictable phenomenon, near enough impossible to subject to an algorithm.
The second is that, even when death is known to be imminent, clinicians have difficulty openly acknowledging that patients are dying. These two problems conspire to create situations where clinicians continue to treat rather than take alternative or ‘palliative’ action, even with the knowledge that death is imminent (Sullivan et al., 2007). Continued treatment manifests in unnecessary investigations and ‘heroic’ medical interventions (interventions that do not offer much hope) being the default choice of healthcare professionals right up to the moment of death (Middlewood, Gardner & Gardner, 2001; SUPPORT, 1995).
A third worrying aspect of all this is that only 47% of physicians has been found to actually know that their patients would have preferred to avoid resuscitation or CPR (SUPPORT, 1995). A surprising 46% of all ‘do not resuscitate’ (DNR) orders (medical clinicians having formally decided and noted the patient should not be resuscitated) were written less than two days before patients’ death.
The fourth issue is that family members have reported moderate to severe pain affecting 50% of conscious patients who died in the hospital. This means that the priorities of treating clinicians are out of step with the needs of their patients. To die in pain, particularly when already being cared for in a healthcare environment, should not be necessary.
The SUPPORT study was designed to solve the challenge of identifying dying and caring better for dying patients. Critically, the intervention phase of the SUPPORT study failed to produce any significant improvement in quality of care. The investigators acknowledged that their aims had been unrealistic. For one, dying was found to be too complex a phenomenon to be fully ‘tamed’ by medical or clinical science. But even those practitioners who were assisted to achieve a more effective identification of dying did not alter their communication with critical stakeholders, and they avoided dying as a prognosis (SUPPORT, 1995).
Educational factors
Junior doctors and nurses are rarely prepared for their first experiences of death. Early experiences of death and dying can stay with healthcare professionals and influence future practices (Cooper & Barnett, 2005; Sorensen & Iedema, 2009). Many healthcare professionals often feel ill prepared to care for people at the end of their lives (Gibbins, McCoubrie & Forbes, 2011). Policy-makers and universities are trying to improve this situation. For example, the Australian government has funded national projects such as the Palliative Care Curriculum for Undergraduates (PCC4U) to encourage the integration of palliative care education in undergraduate and relevant postgraduate health curricula (Queensland University of Technology in collaboration with Queensland Government, Flinders University & Curtin University of Technology, 2014). A tension remains, however: junior clinician education (in medicine, nursing and allied health) tends to avoid dealing with the full implications of the clinical factors discussed immediately above. Health professional education therefore tends to fall short when it comes to training novices for the clinical uncertainties and communication complexities surrounding dying.
Personal factors
Doctors, nurses and allied health professionals are continually exposed to disease and death. Some authors posit that, along with fear of their own death (death anxiety), this constant exposure may be an important reason why healthcare professionals find it difficult to communicate with dying people and their families (Kasket, 2006; Peters et al., 2013). Healthcare professionals’ perceived need to alter feelings in order to maintain an outward façade for patients and families has been termed emotional labour: the hard work health professionals need to do to not become overly emotional. This emotional labour can result in professional caregivers becoming emotionally disconnected from their own feelings, and from the feelings of those around them (Brotheridge & Grandey, 2002). In turn, this can lead to healthcare professionals using defensive and asocial behaviours, resulting from their detachment and denial of their own feelings towards dying people and their families (Solomon, Greenberg & Pysczynski, 2000).
- death anxiety
the fears that we experience in the face of death.
- emotional labour
the emotional work many people do in formal work situations. This work centres on mitigating their feelings towards others. Often this labour is about appearing more friendly and patient than people might be in informal situations in everyday life.
So how do these factors influence patients’ and families’ experiences of end-of-life care? Let’s turn now to practice example 7.1.
Below is the first excerpt from an interview conducted with a patient James and his daughter, Tracey. James was an inpatient in the oncology ward of a large metropolitan hospital where he had been for several months prior to the interview. He was discharged to his home prior to being admitted to the local palliative care unit where he died several weeks after the interview.
TRACEY: They can’t cure him.
JAMES: They [doctors] can’t cure me, they know that. I think they [doctors] are just using me as a ‘guinea pig’ and especially after the way they [doctors] spoke the other day.
INTERVIEWER: What was it about the way of speaking that made you feel like that?
JAMES: I think it’s the attitude of the doctors. They’re up there instead of down there … [non-verbally uses his hand to express height difference] … Their [doctors’] heads are higher than … they’re not listening to you! You’re saying stuff to them, it’s going over their [doctors’] head. They’re not even putting it in the book [case-notes and/or other documentation]. The nurse comes back and tells you: ‘I’m sorry I can’t do anything, there’s nothing in the book.’
TRACEY: Hmm, quite a few times that’s happened. Last Thursday, that’s the first day he [James] got the diarrhoea and he informed them [clinicians] and I was on my way in [to the hospital].
JAMES: Yeah.
TRACEY: Somewhere between 10 a.m. and 11 o’clock, I got him in here [to the hospital]. 1:30 p.m. I spoke to the nurse, the male nurse and everything, and he was all apologetic. He [the nurse] couldn’t do anything until something was written down in the book [clinical documents] and he said that he’s paged the doctor and they’re [the nursing staff] still waiting on him [the doctor] to come up. It hit 4:30 in the afternoon and I needed to start making my way home and still no doctor had been up and he’s [James] got diarrhoea, sweating profusely, severe cramps, pain everywhere! Yeah communication, like they [clinicians] need to improve communication, like between doctors and doctors they’re shocking …
JAMES: Yeah.
TRACEY: [The communication] Between doctors and nurses is bad but the doctors between doctors are absolutely shocking
JAMES: You tell them something, the nurse passes and says, ‘Aw I need to get permission from this person and that person’, but they don’t seem to get the thing across …
TRACEY: … the information across properly.
JAMES: They [the nursing staff] put it down, half the time I don’t think the doctors read it, just look at it and glance and piss off, that’s it.
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