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.
Annexes to the Guidance
Twelve separate annexes were attached to the Guidance to provide additional support and information for practitioners making BASRiS assessments, as follows:
- Annex A: draft BASRiS application form;
- Annex B: a matrix to support the clinical judgement process (including links to additional tools to support clinical judgement);
- Annex C: worked examples or 'case studies' showing how different types of cases may be managed;
- Annex D: a summary of current benefits devolved to Scotland by recipient group;
- Annex E: a copy of the DS1500 form;
- Annex F: a summary of the differences between the requirements for BASRiS and DS1500 forms;
- Annex G: the Scottish Social Security Principles;
- Annex H: a copy of the Social Security (Scotland) Act 2018;
- Annex J: definitions for different types of residency status;
- Annex K: suggested areas for inclusion in an information leaflet (to be completed):
- Annex L: a draft BASRiS fee claim form for General Practitioners; and
- Annex M: legislative definitions of 'a child'.
Views were sought on whether the information presented in the annexes would likely support the clinical judgement process.
This question attracted a strong, positive response, with nearly three quarters of respondents (70%) agreeing that the annexes would be supportive.
The BASRiS Form
A few suggestions were put forward for changing the BASRiS form in Annex A to better assist clinical judgements, including that the form should directly refer to the legislation and the Guidance and that essential components of the Guidance could be moved to the form itself (e.g. listing the indicators from Section 7 on the form):
"We believe the form should better reflect the guidance and make more direct reference to the definition used in the legislation." [Marie Curie]
"The essential components of the Guidance need to be contained on the actual form as not all doctors will read the 51-page Guidance document every time they complete one of these." [Registered Medical Practitioner]
One other respondent also suggested that the BASRiS form should more closely mirror the parameters and requirements of Section 7, with tick boxes linking to the indicators to align the content. Again, the form should not ask the Registered Medical Practitioner to make a functional assessment of their patient, it was suggested.
One individual and one medical organisation suggested that reference to 'terminal illness' in the form be replaced with 'has progressive conditions leading to death.'
A different organisation suggested that a clearer justification was needed for the information being requested on the BASRiS form, which was more than is required in the DS1500, and which will require more time to complete.
One respondent suggested that a form for doctors to complete on the Scottish Care Information (SCI) gateway with improved formatting would be more suitable, given pressures of GP workload and another suggested that having an electronic form would avoid risks associated with sensitive data being printed, filled in, scanned and/or emailed to Social Security Scotland.
Matrix to Support Clinical Judgement
Annex B was seen as particularly helpful in guiding practitioners:
"We welcome the addition of annexes as a way to guide clinicians into taking a broader view about which of their patients may be eligible for BASRiS and see the matrix in Annex B as a useful tool to support clinicians to identify whether an individual has a progressive disease that can reasonably expected to cause the individual's death." [Macmillan Cancer Support]
That being said, there was also some suggestion that Annex B could be reworked (as highlighted earlier), to provide clearer definitions of some of the conditions, especially cancer. Other specific suggested changes to Annex B, Section B (mainly presented by one Registered Medical Practitioner) included:
- Bullet 1 - changing the text to 'Decreasing activity and function - limited self-care, in bed or chair for more than 50% of day, and increasing dependence in most activities of daily living (see: performance status tools below)' to reference more than one score;
- Bullet 4 - revising to take account loss of muscle mass which happens in people with heart failure and people with a high BMI who research shows have poorer outcomes, e.g. 'Significant appetite and weight loss over the last few months, remains underweight, loss of muscle mass.';
- Bullet 8 - clarifying if the statement means the person chooses no treatment or none is available, e.g. 'No available treatment option that would lead to recovery or the person chooses not to have curative treatment. Dramatic changes in cancer treatment mean it is no longer so likely that the person will decline rapidly in a predictable way so suggest: Cancer (where the decline may be rapid or more predictable)';
- Bullet 2 under Motor Neurone Disease - changing to 'aspiration pneumonia';
- Bullet 7 under Stroke - changing to 'difficulty with communication'; and
- under the general neurological conditions and frailty sections of Annex B, that recurrent chest or urine infection and labile Blood Pressure be added.
One respondent suggested that the referencing in paragraph 1 of Annex B should refer to the Supportive and Palliative Care Indicators Tool (SPICT) as well as the Gold Standards Framework (GSF), since much of the text was taken from SPICT rather than GSF. The same respondent noted that a new version of SPICT was shortly due to be produced and that the annex could be update to use the new text.
Moving some of the contents of Annex B into Section 7 of the main document was also suggested (as above):
"Parts B) and C) of Annex B contain additional important indicators of decline, which relate to both the person's overall health and also by disease. We believe that these would be very useful in supporting clinicians to make their judgement. Leaving them in the Annex, entitled 'some tools which you may wish to use' could mean that they are not read or referred to. Therefore, we would like to see these elements absorbed into Section 7 of the document." [Marie Curie]
One respondent also suggested that the content in Sections B and C of Annex B be regularly reviewed to take account of developing evidence and understanding (for example, around the definition and recognition of advanced dementia).
There were several supportive comments that the worked examples in Annex C were particularly helpful (for both doctors and others) although there may be scope to change some of these for accuracy.
Specifically, more work was needed on the Motor Neurone Disease (MND) example and one organisation offered alternative wording for this case study.
A better worked example for patients with long-term outlook on secondary cancer which could be classed as 'terminal' was also needed.
A different respondent suggested that the colon cancer case study needed to adjusted to show that they were on palliative chemotherapy and to be absolutely clear that there is not a prospect of cure. The case study for cancer of the intestine should also be revised as it did not make sense, it was suggested (i.e. cancer of the intestine would spread to other organs rather than throughout the intestine unless exceptionally rare).
The case study for terminal lung cancer was also seen to be in need of change, to offer guidance on how to talk with a patient and family about 'hoping for the best and planning just in case'. [Registered Medical Practitioner]
The case study on Glioblastoma should also avoid including a year, it was suggested, as this may date the Guidance too much (suggested by one medical organisation). The same respondent noted that it might also be helpful here to explain the legal position of an 'appointee' as this is less familiar than a welfare guardian, it was suggested.
One children's organisation also requested that the word 'very' be removed from the first sentence of the worked example of a rare brain tumour.
Another medical organisation suggested that, while the worked examples were welcomed, none were especially controversial and more borderline cases may be more helpful (although they noted that all cases would inevitably be unique and need to be dealt with on a case-by-case basis). One children's organisation suggested that it would also be more helpful to have case studies that clearly explain how the DS1500 for reserved benefits interacts with the BASRiS process in various circumstances, to build on GPs' current knowledge.
One respondent suggested that the case studies for adults should be presented before those of children and young people. Another children's organisation suggested that it would be helpful to remove references to the Registered Medical Practitioner's gender throughout the worked examples.
One organisation suggested that there could be better sign-posting to the worked examples or case studies contained in Annex C of the Guidance, as these could be helpful in guiding clinical judgements. Linking the case studies more to decision making may also be welcomed (i.e. explaining how the tools in Annex B were applied to inform clinical judgement):
"It might be helpful if the worked examples more explicitly illustrated how the tools can been used to aid consistent decision-making. At least one of the case studies should be used to explore and highlight communication and language issues - where a patient may be approaching the end of life but where "terminal" may not be the best or most useful form of language. Another case study might usefully explore the role of other members of the multidisciplinary team (MDT) in the BASRiS process." [Scottish Partnership for Palliative Care]
Another organisation that welcomed the inclusion of worked examples in Annex C suggested that these should be tested with clinicians to ensure that they assist real world clinicians in making the decisions about eligibility under special rules.
Only one respondent suggested that medical professionals would be able to make assessments based on their experience/expertise and so such examples may be redundant, and another suggested that they were inappropriate or misleading.
Rationalising the Annexes
Some who rated the annexes positively overall commented that they could be further explained, rationalised or reduced:
"The Guidance is long, and we would question whether all the annexes are necessary in their current form. We believe that material that is likely to have a bearing on decision making should be prioritised." [Parkinson's UK Scotland]
There were few comments made in relation to annexes D-M, except for the following (each raised by just one or two respondents):
- Annex D - that there was perhaps some inaccuracy with table and that it was not as clear and helpful as it could be. The respondent offered to provide an alternative version, if useful;
- Annexes G and H - providing links/hyperlinks to primary legislation instead of the full text was suggested, as these were unlikely to be routinely read/used;
- Annex J - that it should be removed as it may be inferred that GPs are being asked to make decisions about residency;
- Annex K - respondents would welcome seeing more information in this section in due course; and
- Annex M - that it was unclear why a doctor completing this form would need the legal definition of a child or for background on the Social Security (Scotland) Act to be repeated.
Only one respondent noted that the annexes collectively provided only background or context and so were not relevant to supporting the clinical judgement process.
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