The House of Commons is inviting submissions about Palliative and End of Life Care
The Health Committee of the House of Commons, has just announced that it will be looking into Palliative and End-of-Life Care, in a 'broad sense', and it is inviting written submissions before December 15th:
Extracts from its 'terms of reference' page include:
'The Health Committee has decided to take a broader look at the issue of Palliative and End of Life Care. We will examine the way that health and social care services, and the voluntary and community sector, support people who are likely to die within 12 months, what opportunities exist for better integration and for improving care quality, and the experience of those caring for people at the end of life.
The Committee will also review the definitions of, and distinctions between, 'palliative' and 'end of life' care to examine how to provide more effective targeting of resources and management of interventions necessary to bring about service change.
The inquiry will examine palliative and end of life care for adults, including the frail elderly, and children and young people.
...
The Committee will consider, amongst other things (I {Mike Stone} have selected these from a very wide list, because these fit with my own 'concerns and analyses'):
The impact on delivery of end of life care in hospital following the withdrawal of the Liverpool Care Pathway
The reasons why so many people die in hospital when the majority of people say that that they wish to be cared for and die at home or in a hospice
How easily can patients withdraw from active treatment if that is their preference (including the role of advance care planning and Lasting Power of Attorney)'
I have got some 'developed views', about the reasons for why so many people die in hospital, and why patient-originated 'planning', and patient-expressed 'refusals of treatment', seem to be so problematic. The reasons seem to include:
1) Clinicians are unwilling to properly accept the decision-making autonomy of patients, with respect to the refusal of [offered or potentially offered] treatments: the reasons for this include:
a/ 'Paternalism' - clinicians are usually 'trying to help patients', and they seem to see 'protecting patients from their own bad decisions' as part of their role: that isn't the way the law has developed, and although 'it seems sensible on the face it it' this paternalistic attitude is hugely unsatisfactory, if you consider clarity within decision-making;
b/ If clinicians do, as seems to be legally the requirement, simply accept decisions from mentally-capable patients, they are likely to 'get hammered later': explaining to a distressed and just-bereaved family, the next day, that 'Yes, we could have kept your brother/father alive, but he told us not to do that' is often likely to lead to a rather heated and fraught conversation/confrontation;
c/ 999 Paramedics are both 'interventionist by instinct' and also nervous about being subsequently accused 'of doing nothing' (by their bosses, or by coroners) - combined with the many other complications for end-of-life at home, this frequently results in patients who are not themselves [because they are unconscious, 'incoherent', or just 'too weak to argue'] capable of 'forcefully arguing with paramedics' being taken to hospital;
d/ Hospitals are, I suspect, 'nervous' about sending terminal patients home, to 'less than perfect' care situations: THIS IS RATHER FUNDAMENTAL, because often the real-world choice for a patient, will be between better clinical care but in a hospital which is not where the patient wishes to die, or a lower level of clinical care at home, where the patient wishes to die. That choice needs to be discussed more widely and honestly - it is surely UP TO PATIENTS to decide whether they prioritise the place of their death, or maximum clinical attention;
e/ There are significant and serious complications, stemming from misunderstanding and misinterpretation of the Mental Capacity Act - but I have discussed those at length, including elsewhere in this discussion forum.
2) None of the above, is about the legitimate questions of 'are the necessary resources available ?' and 'is best use of the available resources, being made ?' - the above issues, would exist (except for d/) however well-resourced the NHS was. It is true that correct training, does require 'resources', but in essence, the things above are about 'mindsets and understanding'.
I will be sending a submission to the House of Commons Health Select Committee, and it will start by pointing them at this forum piece, and asking them to read this before moving on to my written submission: if they do read this, they will presumably read any comments people add here (so if you want to comment about palliative and end-of-life care, but do not want to actually send a piece to the MPs, they might [just possibly] read something you post here).