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

Clinical Judgements

The definition of terminal illness for the purpose of disability assistance will be based on the clinical judgement of a Registered Medical Professional, and will not be based on any time-restriction in relation to prognosis of the condition/s. A number of relevant indicators were provided in the Guidance and it is made clear that it is not necessary for all of the indicators to be present for eligibility to apply, but that several in combination would be expected. The Guidance also explains that decisions should be made on clinical grounds as well as based on suitable clinical expertise and opinion (including experience of the patient and their carers or family, and information gathered from colleagues). It also sets out that certainty is not required.

Q4. Does the Guidance make clear how clinical judgements should be made?

Response	Number	Percentage
Yes	35	65%
No	13	24%
Unsure	1	2%
No response	5	9%
Total	54	100%

Two thirds of respondents (65%) agreed that the Guidance makes clear how clinical judgements should be made.

Again, supportive comments were made that the Guidance contained a lot of information to guide judgements, that the worked examples were helpful and that the list of indicators provided in Section 7 were a useful summary of the more detailed content in Annex B.

One respondent welcomed the statement that it is not necessary for all of the indicators to be present and two commented that removing the length of the qualifying period and removing the need for certainty was welcomed^[4]:

"…it is to be welcomed that the focus is on the patient's clinical status, prognostic factors, underlying disease and that the, for some, confusing issue around the length of qualifying period is removed from the process." [RCGP Scotland]

"…it is made clear to clinicians that there are difficulties that surround prognosticating the exact time in which someone will die and that therefore certainty of death is not required from a clinician." [Macmillan Cancer Support]

Again, several commented here and elsewhere that the flowchart was particularly helpful.

Contradictions Confounding Judgements

The main emerging issue for this question was concern that some parts of the Guidance may provide contradictory advice on how judgements should be made and the role of the clinician in making those judgements.

In particular, one organisation noted that the Disability Assistance Regulation (DAR) and Section 3 of the Guidance both state that illnesses must be 'terminal' in order for a patient to be eligible whereas Sections 1 and 7 provide guidance that eligibility for BASRiS is not defined solely by the diagnosis of a terminal condition, and that clinicians should make an additional assessment on the person's need and functionality. While some may therefore interpret that a diagnosis of a terminal disease is not the sole qualifier for access to the BASRiS system, others may not. This was confounded by the inclusion of Annex B and the indicators in Section 7 which may also be interpreted differently:

"We are concerned that conflicting guidance for clinicians may have a negative impact on access to BASRiS. We would like to see stronger engagement with clinicians about how easy they find the Guidance to understand, particularly in relation to what requirements they expected to meet in terms of defining a person's eligibility. We are keen to ensure is that this lack of clear instruction to clinicians does not create the environment for inequitable application of eligibility criteria on applicants." [Macmillan Cancer Support]

This same organisation said that they would like to see the Guidance amended to give clinicians clear guidance as to whether they are: (a) defining eligibility based on the diagnosis of a terminal illness that will likely be the cause of their death (b) defining eligibility based on both a diagnosis of a terminal illness that will likely be the cause of their death and based on their clinical judgement that a patient fits a range of indicators that the CMO has defined as symptomatic of nearing the end of life.

A different organisation suggested that, while they welcomed the content of the approach to clinical assessment set out in Section 7, they felt that the language used to describe the indicators was necessarily imprecise (e.g. "advanced", "rapid/erratic", "unstable", "worsening") and therefore capable of widely varying interpretation, either singly or when considered collectively. This may lead to variation in the judgements made by clinicians, with consequent inconsistency. Secondly, the use of imprecise terms may mean that the basis of the judgement lacks transparency. For this reason, they and another respondent suggested that Section 7 could be further improved by linking it more explicitly to Annex B or bringing it into the main body of the text. Both respondents recommended stating that the tools in Annex B are to be used as part of the clinical assessment to inform the clinician's judgement, to help reduce variability in implementation:

"… this content should be brought into the body of Section 7 so that they are clearly and unambiguously part of the required clinical judgement process. Currently the content of Annex B is framed as "some tools which you may wish to use" - this means that some doctors may use Annex B content and some may not, further increasing inconsistency and lack of transparency in decision-making. An alternative to including the content of Annex B (sections B and C) in the body of Section 7 would be to frame the link to the Annex more directively e.g. "in reaching your judgement you are expected to use the indicators in Annex B as well as the indicators in this section [7]." [Scottish Partnership for Palliative Care]

Another respondent noted that there was contradiction between Sections 7 and 6 with the former suggesting that Registered Medical Practitioners should consider the wider circumstances of their (terminally ill patient's) ability to cope with undertaking activities of daily living (the same as on the draft BASRiS form) while the latter states that it is not for practitioners to undertake a formal functional assessment. This paragraph should, therefore, be taken out of the Guidance, they suggested as it was both contradictory and superfluous (and may lead to confusion and considerable variation in application of the guidelines, another suggested):

"This is not relevant to the fundamental objective of the Guidance which is to assist a Registered Medical Practitioner to make a judgement on whether or not a patient is terminally ill, as defined by the Social Security (Scotland) Act." [MND Scotland]

Again, there was a feeling that the eligibility criteria were too loose and there was insufficient guidance around progressive but potentially curable illnesses:

"With regards to patients with malignant disease I think further guidance is necessary on definition of a terminal condition. With increasing treatment options many patients live for a reasonable time with advanced incurable disease. Does progressive illness mean currently progressive or highly likely to progress in future and is it expected that progression is accompanied by decline? I think the looser a definition the more likely it is that there will be inconsistencies in interpretation." [Registered Medical Practitioner]

Redrafting of Section 2 and Section 7 would assist with this, it was suggested.

The Surprise Question

Several other organisations highlighted what they perceived to be contradictions or problems about the relationship between Section 2 (the flowchart), Section 7 and Annex B. Specifically, Annex B makes reference to the 'surprise question' which was perceived to introduce the concept of timeframe, and therefore was seen as being in direct opposition to the legislation which very deliberately removes the need for a clinician to be able to estimate time to death:

"The subjective term "very soon" could be argued to be even more restrictive than the six-month timeframe stipulated by DWP. We believe that there is a high risk that some clinicians may understand it as limiting eligibility for special rules to those who they identify are in the last weeks of life… We believe that it is extremely unhelpful for this question to be included in the light of the emerging evidence that it is not useful, and acts as a barrier to some, and in particular those with non-malignant and neurological conditions from being identified." [Parkinson's UK Scotland]

A different respondent suggested that it should be removed not only because it contradicts text in other parts of the Guidance, but because it contradicts the legislation:

"The whole purpose of this part of the legislation was to remove the matter of life expectancy from diagnosing someone as terminally ill." [MND Scotland]

One individual also suggested that the 'surprise question' could lead to confusion and that the form should only be completed if the patient were expected to die 'very soon':

"As a former Specialist Palliative Care Lead CNS I feel that this gives the impression that patients who may be expected to survive for months to years might be excluded. These patients can suffer from progressive, constant deterioration and will need their benefits in place as will their carers. This patient group is increasing and require intervention from a range of practitioners throughout their trajectory and have increasingly complex needs. Just because they are not expected to die 'very soon' should not mean that they are unable to have a BASRiS or DS1500 completed." [Individual]

One Registered Medical Practitioner suggested that it may be better to rephrase this closer to the original question formulated for this purpose, which asks professionals to decide if the person is sick enough to die and 'Would you be surprised if this person were to die in the next weeks, months or years?' (rather than 'very soon.')

If the 'surprise question' is to be retained in the Guidance, the Guidance should acknowledge that it is problematic as an identification tool, based on research evidence, it was suggested.

Consultation with Nurses

While one respondent noted that the document made clear that medical professionals can consult nurse specialists who know the patient best, if needed, five different respondents who said 'yes' to this question did go on to stress that they remained unclear as to why nurses would not be able to complete the forms (but could nonetheless be consulted in the decision-making process). This was also raised by some who said 'no':

"I think the Guidance is clear but don't quite understand why the specialist nurses' clinical judgement can't be used for the BASRiS forms as it can be for DS1500. I feel that this is a retrograde step of about 20 years as we have been completing the DS1500 forms for this time and make the judgements without a problem. I feel the patients may lose out some times if they are waiting for busy medical staff/GP to complete the form." [Other Healthcare Professional]

"The CNSs in our team are highly skilled and experienced and are in a unique position to complete the form, and given they see the patient at the start of their cancer journey, are able to access this benefit rapidly. This is clearly very important in a group of patients who can deteriorate very quickly. Although the forms are fairly brief, if I had to complete them for my relevant patients, it would certainly reduce my time spent interacting with patients. If the CNSs are uncertain if a patient is appropriate for a BASRiS form, they would discuss with medical colleagues and occasionally do." [Registered Medical Practitioner]

"…my concern is around who completes the BASRiS form as now specialist nurses are not able to complete. This will result in patients not receiving benefits." [Other Healthcare Professional]

One respondent suggested that the flowchart be edited and that Registered Medical Practitioners should be actively encouraged to seek the advice of specialist nurses and others.

One final comment was made that there was perhaps "too much" information and that this may not be helpful in assisting decisions and another was made that the consent requirements may add an additional burden to already overstretched clinic appointments.