My Lords, I too welcome this Bill and congratulate the noble Baroness, Lady Finlay, for bringing it back to the House. I welcome the Bill because, if enacted, it should certainly improve access to palliative care for dying people. However, as has been said, the Bill does not include some of the provisions contained in earlier versions of the Bill as introduced in 2015 and 2016. The noble Baroness has acknowledged this and says that it is in the interests of getting a shorter Bill. However, if the Bill is to ensure the highest standards of care for those who need palliative care, these provisions need to be recognised in some form, whether in the Bill itself or, as the noble Baroness has suggested, in a code of practice.
The first of these provisions relates to supporting individual care preferences. Like the noble Baroness, Lady Brinton, I am disappointed that this latest version of the Bill does not include a duty on clinical commissioning groups to provide patients with support to meet their preferences in care, or support on advance decisions to refuse treatment under Section 24 of the Mental Capacity Act 2005, both of which I was very pleased to see in Clause 1 of the 2016 Bill. I believe these provisions should be embraced in any palliative care framework, for three reasons.
First, there is clear evidence that documenting care preferences through the process of advance care planning increases use of hospice and palliative care and prevents emergency hospitalisation towards the end of life. It increases patient and family satisfaction and reduces stress, anxiety and depression in surviving relatives. The importance of clearly documenting care preferences was highlighted in the recent case of an unidentified clinical commissioning group against P. In this case, a nursing home did not agree with the withdrawal of artificial nutrition and hydration for religious reasons. The patient’s family had to go to court to have their loved one’s previously stated wishes respected. Documented care preferences—that is to say, putting advance decisions to refuse treatment in writing—would have avoided this tragic and stressful situation, as the patient’s wishes could have been honoured without her family having to go to court.
Secondly, we talk about personalised end-of-life care in the ambitions framework and in the NHS Long Term Plan, but we know that healthcare professionals do not always understand and implement the Mental Capacity Act 2005, resulting in tragic consequences. For example, in the case of Brenda Grant, life-sustaining treatment was provided against the patient’s wishes for 22 months because those responsible for her care did not pay attention to her legally binding advance decision. More recently, Jillian Rushton received life-sustaining treatment over several years even though she had taken great pains to refuse it. This was because her GP failed to ensure that her legally binding advance decision was properly communicated to hospital staff.
Thirdly, if we are to make a genuine commitment to person-centred end-of-life care and move away from traditional paternalistic approaches, maintaining an explicit focus on individual care preferences in key documents such as this Bill is vital. For all these reasons, I would like to see the points about preferences in care and advance decisions, if not reintroduced into the Bill, certainly recognised as part of the palliative care framework.
The second provision needing to be reintroduced relates to education and training. I would also like to see the comprehensive section on supporting health and care professionals to provide care, particularly in line with the Mental Capacity Act, which appears in Clause 3 of the 2016 Bill, incorporated into the palliative care framework. While the BMA and the Royal College of Physicians have developed excellent guidance on clinically assisted nutrition and hydration, it is clear that not all health and care professionals learn about and implement these guidelines. Giving legal weight to ensuring that all health and care professionals have the necessary knowledge, skills, attitudes and behaviours needed to care for people with palliative care needs is essential if person-centred end-of-life care is to become a reality.
The third provision needing to be reintroduced relates to research. I am sorry to see no mention of research to improve the data we have on palliative care, such as was part of the previous Bill. This is crucial if we are to measure and analyse the effectiveness of palliative care and see where improvements could be made. Moreover, with no information about whether the VOICES survey of bereaved people will be rerun, placing on a statutory footing data collection and research on advances in end-of-life care assumes an enhanced importance. The VOICES surveys provided much-needed information on quality and co-ordination of care, efficacy of pain relief, and quality of communication between healthcare professionals and the patient’s loved ones, among other things. It is vital either that the VOICES survey is reintroduced or that alternative methods of collecting a wide range of data on the quality of care and symptom control at the end of life are developed. Therefore, I hope that the noble Baroness may be willing to add such provisions to her Bill.
Finally, palliative care is not always sufficient. It cannot relieve all the pain and suffering of all dying patients. It is not a panacea. While in the vast majority of cases palliative care can give dying people a good death, it is important to be clear that it will not always be effective, nor will it be suitable for a small but significant minority of people approaching the end of life. That being so, it is important to say that a comprehensive end-of-life care regime must necessarily include a safeguarded assisted dying component for those who want it.