The dying are dying so what does it
matter...?
"The reality is that the LCP is an exemplar of determinate medicine that never should have been rolled out across an entire country, for unlike the course of a common disease, death is so much more than a biological event. "
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For the last decade or so, the Liverpool Care Plan (LCP) has been lauded in the United Kingdom as an exemplar of best practice for the care of the dying. A way to ensure we are all guaranteed ‘a good death’, the LCP is a terminal treatment pathway expressly designed to ensure a common standard of care over the last days of a persons life. It has received widespread acceptance, and has now been incorporated into the palliative care policies and protocols of virtually every public hospital across the nation. However, over the last 12 months there has been some disturbing rumblings from clinicians and members of the public that suggest that the ethical foundations of the LCP may be profoundly flawed, and some serious questions are being asked about it’s use. The essence of the debate that is emerging can be found in the case of Andrea West, and how healthcare professionals respond to the case is exceptionally revealing about our deeper attitudes to those in our care that are approaching the end of their lives.
The case of Andrea West
Andrea West, a 35-year-old mother of six, had been diagnosed with a terminal cancer in January of 2011 but had been advised by doctors that she could expect to live for a further two years. In September of this year, some 19 months after the initial terminal diagnosis, she was admitted to a local palliative care unit with what the family described as a “routine infection”. Soon afterwards her condition deteriorated and, in what appears to be a case of very poor communication, was declared to be 'NFR'. According to her husband, she was also placed on the Liverpool Care Pathway, but in both cases, these decisions were made without benefit of discussion with either Andrea or himself. She was heavily sedated, most care was withdrawn, further interventions withheld, and she died soon afterwards. Outraged by what he saw as an unnecessarily early death and lack of consultation, Andrea West’s husband claimed that no attempt was made to treat Andrea’s deterioration as it was assumed that she was ultimately going to die anyway.
Palliative care pathways
The LCP is currently regarded as best practice for end stage palliative care in the United Kingdom. It is an aggressive protocol that incorporates the cessation of any kind of intravenous or nasogastric hydration and the use of sedation and analgesia in a manner that some critics claim is analogous to the terminal protocols used for euthanasia in the Netherlands. On average, patients die 29 hours after being placed on the protocol, and a full one-third of all deaths in UK public hospitals are managed through use of the LCP. This raises some profoundly disturbing ethical questions, both about the LCP itself, and the attitudes of healthcare professionals to those in their care that are regarded as being ‘palliative’.
Are terminal care pathways self-fulfilling prophersies?
Firstly, it has been claimed that the major ethical flaw of the LCP (and similar pathways) is that implementation is based upon prognosis. That is, if it is determined that a patient with a terminal diagnosis has deteriorated and potentially may not survive the next few hours or days, the pathway is implemented. The issue here is that the implementation of the LCP, statistically speaking, ensures those suspicions that the patient may not survive are upheld. However, the prognosis of death in such patients is notoriously unreliable, and many nurses and doctors will be able to recount cases where a palliative patient deteriorated, was expected to die, and then rallied and was able to spend a few more weeks or even months with their families. The LCP precludes any such possibility, and in 99.7% of cases, its implementation ends with the death of the patient in just over a day later. The question arises as to what actually resulted in the end of life: the deterioration in their physical condition, or the implementation of the LCP?
The dying are still entitled to life
How you respond to the previous question will be profoundly revealing about your own attitudes towards palliative care and care of the dying. Disturbingly, there are those that suggest that it simply doesn’t matter, as such patients are so close to death that a question of this form is simply meaningless. This is how Andrea West’s husband viewed the NHS attitude, claiming that hospital staff withheld treatment and implemented the LCP pathway ‘because she was going to die anyway.’ Such an attitude implies that those identified as being in the palliative stage of their illness have a diminished right to interventions that may prolong their lives to a point where they are perhaps more prepared for death, and a heightened entitlement to pathways that will ensure they do not survive a serious deterioration in their condition. However, those at the end of their life still have considerable living to do, relationships and financial affairs to put in order and things they need to say. Caution needs to be taken that they are not deprived of this, and although a sudden deterioration in their condition may ultimately lead to death and prevent this, the LCP guarantees such considerations will not happen.
Palliatice care isn't exclusive of patients rights
There appear to be two sides to this debate. One the one hand, hard-line opponents of the LCP suggest that it walks us to within a hairs breadth of institutionally sanctioned euthanasia. Proponents, however, are claiming that it avoids the initiation of futile care, and ensures dignity for the dying. But, there’s much more at stake than is apparent in these two arguments. The reality is that the LCP is an exemplar of determinate medicine that never should have been rolled out across an entire country, for unlike the course of a common disease, death is so much more than a biological event. It has profound social, cultural, financial and personal ramifications that are entirely unique to every person preparing for the end of their life. What is fundamental to a good death is not an effective medical protocol, but the story of the person that is going to die: what is important to them, their history and fears, their hopes and desires, their relationships with those in their lives, and most importantly, the choices they make about how they should die. Palliative care should be shaped by this, and not driven by guidelines and criteria for initiation of protocols. In many cases, the LCP might be the most appropriate response to the deterioration of a persons condition, but in no cases should it be implemented without inclusive discussion. Sadly, in 2011, the UK national audit of use of the LCP showed that of 7058 patients who were entered onto the pathway, 1 in 20 had not been asked about what was important to them if their condition took a downward turn, and 45% of all those who were entered onto the pathway were unconscious before it was considered and implemented. For them, their death may not have been what they would consider a good death.
References
- Anon, 2012. Liverpool Care Pathway for the Dying Patient. The Marie Curie Palliative Care Institute. Available at: http://www.liv.ac.uk/mcpcil/liverpool-care-pathway/ [Accessed January 23, 2013].
- Doughty, S., 2012. Cancer mum denied chance to say goodbye “because doctors did not try to keep her alive”: Grieving husband says she could have lived another two years. Daily Mail. Available at:http://www.dailymail.co.uk/news/article-2216503/Cancer-mum-denied-chance-say-goodbye-doctors-did-try-alive.html [Accessed January 23, 2013].
- Howard, P., 2012. Not so peaceful an end. The Tablet. Available at: http://www.thetablet.co.uk/article/163207[Accessed January 23, 2013].
- Powell, S., 2012. When it’s time: the desire for a peaceful end can be thwarted by futile care in hospital. The Weekend Australian Magazine.
- Sprung CL, C.S., 2003. End-of-life practices in european intensive care units: The ethicus study. JAMA, 290(6), pp.790–797.
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