Terminal illness - definition for the purpose of Disability Assistance - guidance: consultation analysis

Our analysis of responses to the consultation on guidance of the Chief Medical Officer for Scotland, on the definition of terminal illness for the purpose of disability assistance, undertaken between 12 February and 19 April 2019.

Understanding and Navigation

The Guidance was designed to be accessible and succinct, whilst still providing reference to additional support, where necessary, to aid practitioners in their decision-making process. As well as including a flowchart for eligibility for BASRiS form completion, the Guidance outlines the purpose and principles of BASRiS, provides legislative context, sets out the aims of BASRiS and addresses components of professional practice (i.e. how clinical assessments should be made, factual information that should be included in the assessment, consideration of children and young people as patients, details on who can complete the form, communication, professional responsibilities, timescales, consent and access to/release of information).

Q3. Do you find the Guidance easy to navigate and understand?
Response Number Percentage
Yes 30 56%
No 21 39%
No response 3 5%
Total 54 100%

More than half of respondents (56%) said that they found the Guidance easy to navigate and understand.

Some again mentioned the flowchart as being particularly helpful, welcoming its prominence in the Guidance, and others said that they found it helpful to have supporting information contained in annexes:

"The flow chart in Section 2, and Section 7 are likely to be the most read parts of the document by clinicians and we believe that these are the main strengths of the document." [Marie Curie]

The table highlighting the differences between the reserved and devolved systems was again welcomed.

Length of the Document

Similar to responses to the earlier questions, however, even those who gave a positive response to this question noted that the Guidance was perhaps too long. Suggestions were made that even more of the main content could be moved to annexes, and/or that some of the paragraphs could be broken up a little to help the reader:

"While much of it is formed of annexes, it is unrealistic to expect already overstretched doctors to refer to over 50 pages of guidance when presented with a BASRiS form to complete. A very short 'at a glance' guide is required with signposting to further details for those who wish them. This should be limited primarily to the criteria against which decisions should be made that are currently absent from this guidance and the process for completing BASRiS forms." [British Medical Association (BMA)]

There were some suggestions that the length of the document may be prohibitive and result in some practitioners not finding time to read it thoroughly, potentially leading to mistakes in implementation.

"Document too lengthy and has too much information contained within it. Busy Health Care Professionals (HCPs) won't have time to go through all the sections and I fear that errors will be made, resulting in people affected by cancer losing out on valuable benefits at a time when they most need them." [Individual]

Specific suggestions for making the document easier to navigate and understand included:

  • including an index page of content at the beginning of the document (noting, however, that a table of contents is already provided);
  • shortening the Executive Summary; and
  • removing repeated references to the annexes.

Things which could potentially be removed, moved to an annex or required greater explanation included:

  • moving the section on 'patients interests to disclose' to an annex;
  • moving four of the last five paragraphs in Section 7 elsewhere in the document, as they do not explicitly cover clinical assessment (the exception being the paragraph that refers to the worked examples in Annex C); and
  • deleting or providing more explanation for the need to discuss the number of patients a GP will spend time with, on average (Section 7).

Structure of the Document

The layout was also seen as problematic, for some. One medical organisation reported that they found it difficult to navigate as it was fragmented with too many references and cross-references to the 12 Annexes, various websites and to the other sections within the document. The same respondent also suggested that different parts of the document were directed to the reader i.e. Registered Medical Practitioners, and others to a more general audience. This organisation, and another, suggested changes to the structure to make the document more succinct:

"The Guidance is not easy to navigate or understand. There is a need to improve the structure of the document so that key information is prominent and it is easier for clinicians to pick up and use." [Scottish Partnership for Palliative Care]

Highlighting more clearly the key steps in the process, e.g. by putting them into boxes throughout the document, was suggested.

As well as being perceived as being too long, the Executive Summary, in particular, was criticised for being too wordy and potentially off-putting to readers:

"We believe that as it currently stands the Executive Summary feels too 'busy' and doesn't flow when reading it. It is a key element of the Guidance which professionals may concentrate on reading alongside Section 7 of the document. Greater thought needs to be given to making the Executive Summary shorter and sharper. The main body of the document extends to nineteen pages yet the Summary runs into three pages." [MS Society Scotland]

"The final paragraph on page 5-6 in the Executive Summary talks about complexity, and confusion. "Complex" appears twice, "confusing" and "challenging" once each. The word "different" is used six times in a single paragraph. While we acknowledge that this is a complex area of policy, there is a risk that what is intended as a description has the effect of becoming a self-fulfilling prophecy, and being told how difficult it is going to be could act as a major disincentive for doctors to continue the process." [Parkinson's UK Scotland]

One respondent strongly supported a redrafting of the document to simplify language, shorten sentences and paragraphs where possible, to distill the key information into the main document. This, they suggested, would better help meet the policy aim, to make sure that everyone who can benefit from access to benefits under special rules can do so.

One organisation and one Registered Medical Practitioner suggested that an online version with links between sections may be easier to navigate. Another organisation suggested that it may be helpful to hyperlink the contents page to allow people to navigate more easily to particular sections within the Guidance (including hyperlinks to relevant annexes within the text):

"Having to go back and forward to the annexes made it difficult to read this Guidance. This may be easier online but the text is too dense and needs broken up to make it easier to read." [Registered Medical Practitioner]

Target Audience and Purpose of the Document

A further issue raised by just a few respondents was that the document did not make clear who the target audience/reader group was.

One organisation suggested that the purpose of the document needed to be more clearly communicated at the start and should set out the key questions it is designed to answer:

"The Executive Summary or an Introduction should give clear and succinct answers to some basic questions which any reader is likely to have when picking up this document for the first timeā€¦Once orientated at the outset by clear answers to these questions the reader is better equipped to wade through the unavoidable complexities." [Scottish Partnership for Palliative Care]

The suggested questions that should be covered were:

  • Who is the document for?
  • What is the document aiming to do?
  • Why is this important for the reader and the people they provide care for?
  • How will the document go about its aim?

Eligibility Criteria

A final point (mentioned here and elsewhere in the consultation) was that the Guidance should focus more 'up front' and more clearly on the definition of terminal illness and eligibility criteria for BASRiS. One medical organisation noted that, while the new definition of terminal illness was repeated several times within the document, there was no clear heading to direct the reader to it.

Again, there was a suggestion from one respondent that the material and eligibility criteria outlined in Annex B would be better positioned in the main body of the Guidance.

Another individual noted that, while they accepted that it was professionally very difficult to predict the timing of a person's death from a condition (and that this is a key reason behind the new definition), they anticipated some difficulties with the new approach and felt that making objective and subjective criteria more explicit in the Guidance maybe helpful.

One organisation also specifically suggested removing the final bullet point in Section 6 (which discussed eligibility without obtaining BASRiS nor DS1500), as this may be contradictory and potentially confusing.

Overall, it seems that there was support to make the Guidance more concise with some restructuring to make eligibility criteria and the definition of terminal illness more prevalent within the main body of the document. On the whole, the substantive content of the document was not questioned, rather the focus seemed to be on reducing the length and improving the structure:

"The Guidance would benefit from further work to really think about what the audience's requirements are and how best to guide them through it. There is also a need to be mindful of the length of the Guidance. Where possible plain English should be used and with as succinct wording as possible." [Children's Hospices Across Scotland (CHAS)]

One suggestion was made that, once the content of the Guidance has been revised (following the consultation) an independent review be undertaken to ensure that the structure and overall readability is acceptable, prior to publication.



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