Everyone would like to imagine that they will die peacefully, free of pain and other symptoms, and many of us expect that this would be possible given the fantastic health system that we have in the UK. However, a survey by the Office for National Statistics in 2013 found that only 18% of people who died at home were reported by relatives to have had their pain relieved ‘completely, all of the time’ (1). This figure rose to 62% for people who died in a hospice (1).
Hospice care, everywhere
The theme of this year’s Hospice Care Week, running from 6 to 12 October 2014, is ‘Hospice care, everywhere’. So why is pain management so poor for people at the end of their lives, and why is there such a disparity between hospice and home?
There are no easy answers to these questions, but one thing that is notably missing is research to find out why, and to find out how to improve the situation. One common problem that patients and families experience at home is difficulty in obtaining drugs by injection in time to relieve pain following a sudden exacerbation. Not many areas in the UK are able to supply an expert medical visit out of hours when the terminal illness changes in a way that requires review. Now that GPs no longer hold responsibility for their patients out of office hours, on-call doctors are reliant on information summaries written in advance and it is unlikely that patients will see a familiar face when they call in the night.
Pain relief and side effects
Perhaps the most important change in specialist palliative care practice in the last 20 years is the development of analgesic regimes that combine opiate and non-opiate drugs to tackle pain in many ways at once, while reducing the incidenceThe number of new occurrences of something in a population over a particular period of time, e.g. the number of cases of a disease in a country over one year. and severity of side effects. Little is known about which combinations are best and how to make rational prescribing decisions when the orthodox, simple approach fails. Since the approach outlined in the original 1986 World Health Organization (WHO) guideline on cancer pain relief, the WHO three-step analgesic ladder, since revised, is probably effective in only 60 to 70% of cases, it is time that we had more evidence from clinical trialsClinical trials are research studies involving people who use healthcare services. They often compare a new or different treatment with the best treatment currently available. This is to test whether the new or different treatment is safe, effective and any better than what is currently used. No matter how promising a new treatment may appear during tests in a laboratory, it must go through clinical trials before its benefits and risks can really be known. to guide us
The Liverpool Care Pathway (LCP) was developed in the UK to ensure that people at the end of life got high-quality care, irrespective of their disease, or whether they were dying in a hospice or hospital. The use of the Liverpool Care Pathway in the UK has been criticised, and families said that they were particularly concerned about the use of opioid drugs used to relieve pain. Some families were worried that these drugs could have an effect on the patients’ consciousness, appetite and thirst and that this may lead to an earlier death or cause unnecessary suffering.
In England the LCP was the subject of an independent review – The Neuberger Review. This acknowledged that the LCP was based on the sound ethical principles that provide the basis of good quality care for patients and families when implemented properly. It also found that the LCP often was not implemented properly, and had instead become a barrier to good care. In July 2013, the Department of Health recommended that the use of the LCP should be “phased out over the next 6-12 months and replaced with an individual approach to end of life care for each patient”.
Opioids’ effects on consciousness, appetite and thirst
In light of this, the National Institute for Health Research commissioned a rapid review to look at adverse effects of morphine, fentanyl, oxycodone, and codeine in cancer pain studies. Since there is such a lack of research in patients at the end of life, looking at studies on cancer pain was the closest researchers could get to examining the possible effects of these drugs in patients who were dying: a Cochrane reviewCochrane Reviews are systematic reviews. In systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research. on “Impact of morphine, fentanyl, oxycodone or codeine on patient consciousness, appetite and thirst when used to treat cancer pain.” (2)
The review found 77 studies, with 5619 participants. There was no direct evidence that opioids affected patient consciousness, appetite or thirst when used to treat cancer pain. But sleepiness or drowsiness, dry mouth, and anorexia were common adverse events in people with cancer pain treated with morphine, fentanyl, oxycodone, or codeine.
The review was limited because most of the studies it looked at were small, and there were problems with how these studies reported adverse events – either they weren’t reported or recorded properly, or in some cases what was being reported as an ‘adverse event’ was not defined.
Where to go next
This review – with its limited studies and adopting cancer pain as the closest approximation to pain in people at the end of life – highlights a fact that those who work with people at the end of their lives will recognise. There is very little research on how best to care for people who are dying. Marie Curie is already spending £3.4 million each year funding research, and we will be doubling this in the next five years. We hope to encourage grant applications for clinical trials and studies that will help clinicians make the right choices of pain management, in particular, what drugs and what doses to use in what circumstances. We need health economic research on models of nursing and social care designed to allow families to care for the dying at home. It is also likely that current analgesic drugs will never be adequate for some of the most complex or severe cases of pain. Basic research is required to identify new molecular targets and approaches to specific pain states.
So much research is needed in palliative care that it is difficult to know where to start to help research teams with the next line of enquiry. The Palliative and end of life care Priority Setting Partnership, supported and guided by the James Lind Alliance, is soon to report on what research questions patients, carers, health care professionals and the public would prioritise.
It is probably not just that we need to organise care differently, we might need better drugs and ways of administration to help everyone who is faced with pain at the end of life. It is important to remember that not only health service research but also clinical trials and translational studies will be needed to solve the current problems we see in patients at home with a painful terminal illness.
Links
- Office for National Statistics. National Survey of Bereaved People. VOICES. 2013. http://www.ons.gov.uk/ons/rel/subnational-health1/national-survey-of-bereaved-people–voices-/2013/stb—national-survey-of-bereaved-people–voices-.html#tab-Relief-of-pain-and-suffering
- Wiffen PJ, Derry S, Moore RA. Impact of morphine, fentanyl, oxycodone or codeine on patient consciousness, appetite and thirst when used to treat cancer pain. Cochrane Database of Systematic ReviewsIn systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research. 2014, Issue 5. Art. No.: CD011056. DOI: 10.1002/14651858.CD011056.pub2.
