End of life care in the NHS: could we have helped Ivan Ilyich?
Edmund Stubbs, 21 May 2015
In Leo Tolstoy’s short story, The Death of Ivan Ilyich, we meet a man who is suddenly confronted with his own impending death, at a time well before he would have anticipated…the consequence of an injury sustained, of all things, while hanging curtains. Because Ivan had never expected his death he was completely unprepared for it, and, subsequently, suffered much anguish during his final days of life.
As a society, especially in the West, we seem to fear and ignore the fact of death, and, as a consequence, speak about it as little as possible. From my own personal experience of working in hospitals, the eventuality of death is seldom discussed, even in a place where staff interact with extremely unwell people on a daily basis. Perhaps for understandable reasons we try to remain upbeat and do not often discuss such matters, most especially with patients. Maintaining this positive attitude is essential to aid recovery, which happily, in the majority of cases it does.
In Britain we have a care system focussed on the goal of making people better against a background which often regards the death of a patient as in some sense a ‘failure’. This attitude is common to policy makers, clinical staff, health managers and sometimes to the patients’ families. However, to quote the popular TV series ‘Game of Thrones’ (which I never thought I would write about in a healthcare blog) ‘all men must die’, as indeed must all women, though at a slightly later average age!
Around half a million of us will die each and every year. The question this uncomfortable fact poses for health policy makers is: do we let our discomfort in addressing the topic of death thereby cause it’s occurrence in the clinical environment to be neglected, and as a result, threaten the provision of adequate services for those who have reached the end of their lives.
The Parliamentary and Health Service Ombudsman’s recent investigation, entitled ‘Dying Without Dignity’ certainly leads us to believe that the above scenario may, at least in part, be the case. The Ombudsman has revealed that a large proportion of their case work arises in relation to complaints about the end of life care that patients receive.
One prominent issue concerns the lack of acknowledgement by staff that a patient may die within the next few days or hours. A national audit has revealed that discussions with patients about their wishes for end of life care were recorded in less than half of terminal cases. One is perhaps reminded here of Tolstoy’s Ivan Ilyich who experienced great anguish and indeed a strange isolation in that none of those around him would openly admit he was dying. In the story, the only person who could give any relief to Ivan was his young butler, who because he accepted the inevitability of his master’s death, was able to provide him with some degree of comfort.
Though in no way questioning the often tremendous compassion of NHS staff towards their terminal patients, a lack of open acknowledgement and honest discussion of the patient’s true situation can hinder the putting into effect of a patient’s and their family’s wishes regarding end of life care; and can delay, sometimes to the point where it is too late, the fulfilment of these wishes. In particular, for example, the discharge of patients to their own homes for final care.
The Ombudsman’s investigation further reveals that current end of life care can be negligent in symptom control. This has led to patients sometimes unnecessarily dying in emotional and physical discomfort due to procedural mistakes or lack of suitable resources in their treatment. The ombudsman emphasises the need for more rapid diagnoses, improved out of hours end of life care, and for better communication between care stakeholders such as GPs and hospitals if these current problems are to be resolved.
We may have many excellent hospices in the UK, with experienced staff who maintain high standards of care for those admitted to them in their final days. But in the acute sector, where terminally ill or injured patients have been admitted suddenly, or for those who require more long term community care, we must ensure they can spend the end of their lives in the way that they and their family wish. It is a dilemma that will occur for each of us only once. Mistakes cannot be rectified later!
Edmund Stubbs, Healthcare Researcher, @edmundstubbs1