It is important that our report contains new evidence not just analysis of existing evidence.
We have limited resources for research, but we should try to identify questions that we might be able to answer in the time available by systematic review, surveys, or collection of new data.
Perhaps too we might develop new hypotheses that could be tested later, perhaps by others.
Here are some preliminary questions. There are many more to come.
Please suggest other research questions.
- How might the quality of dying be better measured? (At the moment Britain, for example, uses place of death as a surrogate–but this is widely identified as unsatisfactory. NHS England and the Academy of Medical Sciences are interested in metrics relating to the end of life: one measure is “proportion of patients having three or more emergency admissions in the last three months of life”–a measure perhaps more to do with the performance of health services than the experience of individuals.)
- Allan Kellehear says that “dying is easy” and that most suffering occurs between diagnosis and death and in the grief that follows. What evidence is there on this? (The Commission on Palliative Care is developing the idea of SALY–“suffering adjusted life years.”)
- How do resources devoted to palliative care relate to the suffering?
- Can we define and measure overtreatment? As Sam, says one person’s overtreatment might be another’s undertreatment.
- What is the willingness of individuals and their families to pay for expensive treatments at the end of life? Or, more relevant in tax or insurance funded systems, what are citizens willing to forego in order to make expensive end of life care available? (This is a question that might be addressed by surveys, more sophisticated measures of trade-offs, or a citizen’s jury.)
- Can we devise a score of “experience of end of life and grief” (perhaps including nursing home experience) that we might apply across the world (using perhaps the members of the global palliative care network) to compare with the Economist’s measure of the quality of palliative care? (I’ve attached a copy of the index.)
- Do doctors briefly reminded of their own deaths before making decisions on treatment for patients tend to be more aggressive? (The answer seems to be yes.) In contrast, do doctors who are involved in longer reflections on death and dying including their own deaths, make less aggressive treatment decisions? (The answer seems to be yes.) Sheldon is preparing a working paper on this, and there may be important implications for the training of doctors and all health workers.)
Lancet Commission on the Value of Death 
Dear Richard,
I have an offering. It is not completely thought out but may offer some interesting responses which could help to develop and hone it into a more targeted research question.
Does the current approach to commissioning and delivering Palliative care facilitate or hinder the quality of a patient/carerâs experience of their end of life care. (I think we know patients get care delivered by silo organisations and that their care often falls down between the cracks) What other models are there? Would a move to commissioning for patient outcomes (Where outcome has a quantitative and qualitative component) have any impact?
Regards
Charles
Dr Charles Daniels
Clinical Director
Harrow Integrated Care Development Programme
Macmillan Consultant in Palliative Medicine,
LNWHUT
Medical Director
St Lukeâs Hospice
Contact:
020 8382 8001
Cdaniels@stlukes-hospice.org
Cdaniels1@nhs.net
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Thank you for this suggestion, Charles.
One thought that immediately occurs to me is “How would you measure outcome?” Presumably you’d have to ask family and friends.
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Fascinating to watch how the project is evolving.
I’m curious about the unit of care towards the end of life. Specifically, as dependence grows and family/close persons become increasingly involved in care, how valid are individual centred measures of quality? As an extension, how well do these measures translate in cultures/populations where individuality is less defined?
Also, in view of declining religiosity, how do attempts at providing a life after death (physical, social, digital etc) in the form of a legacy affect the intensity and subsequent cost of treatment towards the end of life?
All the best,
Josh Gallagher
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Dear Josh,
Thanks for these interesting questions.
There is a need for much more research on death and dying. Funding is hard to come by.
Best wishes
Richard
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Thank you Richard and your colleagues for all you are doing through this commission.
In “Results through relationships” we have been looking at (a) what we are trying to achieve in supporting people in the last months of life, (b) what’s needed to be able to do that as effectively as possible, (c) identify and unblock the barriers to achieving that.
We’ve looked at what’s necessary and sufficient towards the end of life and developed these “success statements” or “core capabilities” – things we need to be really good at, consistently. This is the latest version:
We are confident that we…
• Recognise when the last months, days and hours of someone’s life are approaching.
• Help them to be as comfortable and cared for (physically and
emotionally) as they want to be throughout.
• Help them (and those around them) to understand and anticipate what may happen during the time they have left.
• Understand what really matters to them about this; how they want to live, what they want to achieve and how they want to die.
• Support them to live well in their own way, as part of their community, focusing on what matters to them together.
• Share what matters to them as appropriate so that they are supported through times of illness in a way that feels right to them, including in the last days of their life.
• Help those close to them to feel supported throughout, including after their death.
We’ve found these helpful both as a focus in real time as we are supporting people in their last months of life, and also in shared sense-making or reflective practice (eg in multi-organisational learning workshops) to understand what’s working well and what’s not – and therefore identify scope for improvement. A simple rating of 1-5 (1 – the statement is not at all true; 5 – the statement is completely true) is a quick way to identify what needs further exploration.
We’ve also been exploring how we can give staff the time, confidence, knowledge, freedom and support to do the right thing, so what matters is what happens. This isn’t always easy.
If you’re interested to find out more about this work in progress (a collaboration between Dorset Integrated Care System, Easier Inc, NHS England Personalised Care Group, funded through NHSE) you can read more at https://trello.com/b/bLoUayqc/improving-care-and-support-in-the-last-year-of-life-in-dorset or join the conversation on twitter @saskie_dorman
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