My Lords, in moving Amendment 203, I declare my interest as chair of Dignity in Dying, the sister organisation of Compassion in Dying. This amendment is supported by Marie Curie, Together for Short Lives, Hospice UK, Sue Ryder and the Alzheimer’s Society, as well as Compassion in Dying, a national charity which enables people to prepare for the end of life. I thank them all for their support and their briefing. I apologise—I have cut my speech to the bone in light of the late hour.
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This probing amendment aims to ensure that dying people are at the centre of decision-making about their care. It is not an attempt to change the law on assisted dying, although the principle of patient choice must be, in my view, central to palliative care as a whole, as well as to the right to choose a dignified death. It is impossible for health and care services to ensure this without having proper, honest conversations. People should be spoken to and listened to in order to find out their wishes, preferences and needs.
This amendment would go some way to ensuring that those conversations take place, that the outcome of those conversations are recorded—I know it sounds so simple, but it just does not happen—and, crucially, that services are designed around their decisions. These conversations are the first step in a process of advanced care planning, where the dying person’s wishes, needs and preferences are recorded in a written care plan. This could include an advanced decision to refuse treatment—a living will; nominating a trusted person to make decisions through a lasting power of attorney for health and welfare; writing an advanced statement of wishes; or completing a clinician-led care plan through a process such as ReSPECT.
Advanced care planning has been shown to have a significant positive impact for dying people and those close to them, because this process helps healthcare professionals to deliver more tailored care, care which the patient actually wants. When a similar amendment was debated in the Bill’s passage through the House of Commons, the Minister responded by expressing support for the principles of advanced care planning and recognition of the importance of patient choice at the end of life.
The absence of statutory underpinning until now probably explains why advanced care planning has never been widely recognised as fundamentally important—hence the relevance of this amendment. It requires that there are systems in place properly to record and share patients’ preferences, as I have said. Mechanisms must be put in place so that individuals’ wishes and decisions are easily accessible—that is no simple task, apparently—and can be respected by healthcare professionals. Real attention must be paid to the recorded wishes of patients on an individual and—even more importantly, funnily enough—a system level. This should include considering how services and funding need to be allocated so that investment is informed by real patient need. For example, if more people planning ahead results in fewer unwanted or inappropriate hospital admissions, this would in turn require greater investment in community-level care to support people approaching the end of life.
I hope the Minister will agree to meet before Report. I do not think this should be carried through to Report and votes and such like. But I hope that we can find a way forward to deal with what is essential for dying people. I look forward to the Minister’s response. I beg to move.