, Julie Burkin1, Catherine Moffat1 and Anna Spathis1
(1)
Department of Palliative Care, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK
Abstract
Coping with breathlessness towards the end of life can be challenging. Breathlessness is a frightening symptom and patients intuitively understand its poor prognostic significance. A key step is honest communication about the prognosis, giving patients time to plan and take control of the last part of their lives. This chapter gives practical tips to facilitate open communication, as well as information about symptom control and support of carers.
Twelve principles of a good death (Debate of the Age Health and Care Study Group 1999)
To know when death is coming, and to understand what can be expected
To be able to retain control of what happens
To be afforded dignity and privacy
To have control over pain relief and other symptom control
To have choice and control over where death occurs
To have access to information and expertise of whatever kind is necessary
To have access to any spiritual or emotional support required
To have access to hospice care in any location
To have control over who is present and who shares the end
To be able to issue advance decisions which ensure wishes are respected
To have time to say goodbye, and control over other aspects of timings
To be able to leave when it is time to go, and not to have life prolonged pointlessly.
Introduction
There is evidence that the degree of breathlessness is a more reliable indicator of a poor prognosis than disease severity or pulmonary function. Breathlessness has also been shown to be a risk factor for emergency room attendance, hospital admission and readmission, and for in-hospital death (Nishimura et al. 2002; Steer et al. 2011).
Breathlessness is undoubtedly a frightening symptom; patients tend to intuitively understand its adverse prognostic significance. Reaching the end of life is no less so; fear of the unknown and distress at the prospect of leaving close family is inevitable. It is therefore not surprising that, for patients, carers and professionals, coping with breathlessness towards the end of life is particularly challenging.
A number of studies have identified patients’ priorities towards the end of life. Consistent findings are that patients wish to be given as much control as possible, to have time to prepare for death and to retain dignity. Each of these principles relies on understanding that the prognosis is poor and communicating openly within families and with professionals. However, prognostication can be difficult, especially in advanced non-malignant respiratory disease, with its unpredictable disease trajectory. This, therefore, is a core challenge when caring for breathless patients towards the end of life. Without an understanding that the end of life is approaching, good care cannot be achieved.
Symptom control can also be a challenge. A self-management approach, emphasised throughout this book as the most effective ways of managing breathlessness, becomes difficult in far advanced disease. It is not easy for patients to learn new techniques, and only those already known and practised are likely to be useful. Deep terror can result from the prospect of dying breathless, with patients and their families naturally imagining ‘dying gasping for breath’, ‘suffocating at the end’ and ‘horrifying panic’. Furthermore, family carers, at a time when their support is particularly vital, are often already deeply exhausted with no further reserves of resilience.
Most patients wish to die out of hospital. Indeed, when asked in advance, less than 5 % would choose to die in hospital. In reality, however, over 50 % of patients are hospitalised at the very end of life and, in patients with advanced non-malignant respiratory disease, the figure is substantially higher. Hospital deaths may not be well-managed, in an environment designed to provide acute care, and the majority of hospital complaints relate to poor end of life care. Uncontrolled symptoms, fear, carer exhaustion and, above all, a failure to predict impending death, are all factors that lead to emergency hospital admission and inadequate care.
Mr Jones was a 78 year old farmer with advanced COPD. He had had four hospital admissions already over the last year, each time with an infective exacerbation of COPD and a step-wise deterioration in condition. He had been house-bound between admissions, and was rarely able to leave the sitting room of his bungalow where he slept in a chair.
He arrived in hospital by ambulance, drowsy and agitated, accompanied by his wife. He had another chest infection, his GP having started antibiotics in the community 3 days earlier. There had been no improvement in his condition and he was now clearly in respiratory failure. He was commenced on non-invasive ventilation (NIV), and became increasingly agitated, attempting to remove the mask.
His condition continued to deteriorate and the admitting team decided that the ‘ceiling of care’ should be intravenous antibiotics and NIV. When the junior doctor explained that he was very unwell and they wanted him to be ‘not for resuscitation’, his wife became extremely distressed, shouting “Why are you giving up on him now? He has always got better before.” She tried to insist that he must go to ITU and be resuscitated, but felt that she was being ignored. He died a few hours later, with the NIV mask still strapped on. His wife was devastated and, a few days later, registered a formal complaint about his care.
Despite the challenges, the premise of this chapter is that it is possible to provide excellent care at the end of life for breathless patients. Central to this is the process of advance care planning, with early and open communication giving patients the time to plan and take control. Careful symptom control, good psychological care and support for carers are also vital component of good end of life care.
Care for those approaching the end of life cannot be, and indeed should not be, simply the domain of palliative care specialists. All healthcare professionals should be able to provide good quality generalist palliative care for their patients. The relative neglect of end of life care until recently may be due, in part, to death being viewed as a failure in medical care, rather than inevitable. It is a duty and privilege to be able to provide compassionate and effective care from diagnosis to death (Spathis and Booth 2008).
Open Communication
Talking about dying does not bring it any closer. It is about making plans so that you can make the very best of living.
How could Mr. Jones’ traumatic death have been avoided? Mr Jones was too unwell to have decision-making capacity, and his wife clearly did not understand his poor prognosis. In the crisis of his final admission, she interpreted ‘not for resuscitation’ as ‘not for active treatment’, and understandably felt confused, abandoned and distressed. The crises was, sadly, almost inevitable. It could only have been avoided if, at an earlier stage, there had been an opportunity for sensitive, open discussion about his prognosis. Mr Jones could have been encouraged to express his views about his future care. His wife’s role in the last few days of his life would then have changed from a devastated bystander to the person caring for him in the way he chose. After his death, she could have been fulfilled from knowing she had cared for him in the way he had wanted.
Advance care planning is a voluntary process of discussion about future care, between patients, carers and professionals, which occurs in anticipation of a potential loss of decision-making capacity. It includes:
Developing a shared understanding of the illness and prognosis
Understanding the patients’ values and personal goals of care, and
Eliciting patients’ specific preferences in terms of treatments and place of care.
Evidence
Research
Advance care planning increases patient and family satisfaction with care, and reduces carer stress, anxiety and depression (Detering et al. 2010).
Open conversations enhance rather than diminish hope (Davison and Simpson 2006). This may be because the hope is now realistic and focused on achievable goals.
End of life discussions lead to less aggressive care, with an associated improvement in quality of life (Wright et al. 2008).
Nurses supported to undertake advance care planning conversations experience greater job satisfaction and feel empowered to provide appropriate care (Seal 2007).
Public surveys
60–70 % of patients are comfortable talking about dying but most professionals think patients are not.
Less than 5 % of patients initiate a discussion about end of life choices with their GP, but 90 % continue a conversation initiated by the GP.
Most people (60–70 %) fear lack of choice about where they die, and lack of open conversations.
Barriers
Despite the evidence for potential benefit from open communication, it is equally clear that these conversations do not often happen, particularly in the context of advanced non-malignant disease such as COPD and heart failure.
The main barrier is prognostic uncertainty which can lead to so-called ‘prognostic paralysis’. The possibility of the prognosis being longer than expected may hinder open communication about it being potentially short. It can be argued, conversely, that the possibility of the prognosis being short should drive early attempts at communicating more openly. In practice, it is human nature to try to avoid potentially emotive conversations, unless absolutely necessary. The societal and cultural taboos in relation to talking about dying are well recognised and, in the UK, the national Dying Matters coalition (www.dyingmatters.org) is making progress is breaking down these barriers at a societal level.
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