NOTE:
NICE is unable to accept comments from non-registered organisations or individuals.
If you wish your comments to be considered but are not a registered stakeholder, please register via the NICE website or contact the registered stakeholder organisation that most closely represents your interests and pass your comments to them.
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This scope is focused on the last few days of life. NICE would be grateful for your views on whether this is the correct timeframe within which to focus this guidance.
Some of the areas the scope proposes to cover may arise in specific terminal conditions at an earlier stage, perhaps weeks before death occurs. NICE would be grateful for your views on aspects of difficulty with clinical decision-making and symptom management in the last few weeks of life, where a formal review of evidence may guide
Renal Association]
[Professor Edwina Brown]
Comments
Comment
No.
Section number
Indicate number or
‘general’ if your comment relates to the whole document
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1 3.2.a Kidney failure, or dialysis, should be mentioned as chronic disease.
Although less common than heart failure and pulmonary disease, there is a high mortality for patients with CKD 5, particularly in elderly – and such patients have specific requirements at end of life, e.g., withdrawal of dialysis, or not starting dialysis.
PLEASE NOTE: The Institute reserves the right to summarise and edit comments received during consultations, or not to publish them at all, where in the reasonable opinion or the Institute, the comments are voluminous, publication would be unlawful or publication would be otherwise inappropriate.

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Section on anticipatory prescribing should include section on patients with poor kidney function (includes worsening of kidney function or acute kidney injury secondary to major illness, as well as patients with known advanced kidney disease. There is a tendency to underprescribe in such patients because of fear of giving inappropriate drug or wrong dose
Consideration should be given to an additional section on withdrawal of treatment – includes medications, e.g. antibiotics as well as life supporting treatment such as dialysis. Questions would include about whether withdrawing treatment at end of life hastens death, how to communicate decision making with family, etc
Would suggest review question on withdrawal of treatment – when to consider, how to communicate, impact on time to death
There does not appear to be any discussion about cultural aspects of expectations of care at end of life, decision making, family involvement. This is particularly important for parts of the country, e.g., London, where there are many immigrants, and for diseases, such as kidney disease, which are more common in non-white populations
Please email this form to: CareofDyingAdult@nice.org.uk
Closing date: 5pm on 29 August 2014.
PLEASE NOTE: The Institute reserves the right to summarise and edit comments received during consultations, or not to publish them at all, where in the reasonable opinion or the Institute, the comments are voluminous, publication would be unlawful or publication would be otherwise inappropriate.