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.

Variability in Implementation

Included in the underlying principles of BASRiS are that the process should be fair and seen to be fair and transparent to medical practitioners, other professionals and the public. The decision-making process should be consistent, despite the decisions varying according to individual circumstances. The Guidance seeks to assist practitioners in realising each of these and views were sought on whether it would, as drafted, lead to reduced variability in implementation.

Q6. Do you think the Guidance is likely to lead to reduced variability in implementation?
Response Number Percentage
Yes 17 31%
No 30 56%
Unsure 4 7%
No response 3 6%
Total 54 100%

This question attracted the least positive response overall, with more than half of respondents (56%) expressing that they did not agree that the Guidance would likely lead to reduced variability in the clinical judgement process, unless it was changed.

Variability Due to Time Constraints

Consistent with other areas of the consultation, comment was again made that limiting the form-filling to Registered Medical Practitioners may lead to variability, largely because those authorised to complete the forms are the least likely to have time to do so. This, in turn, may lead to delays in patients receiving benefits when they needed them most, it was perceived:

"I am concerned that the need for medics to complete the form will lead to delay for patients receiving benefits. Often it is clinical nurse specialist who is best placed to complete form as they have completed a holistic assessment. With the new form, as there is often not a medic within the team, I will have to ask a medical practitioner who may not know the patient as well as I and who may be busy with other tasks leading to delay in completing form." [Other Healthcare Professional]

Limited time and other pressures already faced by practitioners may also mean that they are unable to complete the forms at the most appropriate junctures:

"In order to ensure it is implemented at the right time this form should be able to be completed at the appropriate time by whichever Health Care Professional knows the patient best. This could be a nurse or a doctor." [Forth Valley Local Medical Committee]

"Under the proposed Guidance I believe that there will be an increase in variability in implementation. Clinical nurse specialists and advanced nurse practitioners who currently complete DS1500s on a daily basis are excluded from doing so with the proposed system and I do not believe that a consultant or GP will be able to commit to implementing benefits assistance in a timely manner. This could potentially have a detrimental effect on the care and wellbeing of individuals who are living with a life limiting illness." [Other Healthcare Professional]

Concerns were raised that the completion of BASRiS may not be prioritised with the same urgency as the DS1500 currently receives and that this may, inevitably, disadvantage patients. Indeed, one respondent suggested that the numbers of referrals may be reduced as a consequence of removing nurses from a position of responsibility.

'Fear of change' and a need for practitioners to become familiar with the process may also lead to some variability in practice, it was suggested. One respondent also suggested that variability may be more likely to occur as a result of differences in the relationships held between GPs and their patients/families, and the varying levels of input that different clinicians have with their patients and families. Less variability in relationships was seen to exist for nurses:

"Making it doctors only sadly will mean significant delays in patients getting the funding they are entitled to as clinical nurse specialists largely complete these at present. They often have better knowledge of patients and their social situation, level of functioning too, so are often better placed anyway." [Registered Medical Practitioner]

"In many situations the person who knows the individual best will be a District Nurse, Advanced Nurse Practitioner, Hospice Nurse or Clinical Nurse Specialist. It is essential that the person who knows the individual best is the person who signs the form." [Registered Medical Practitioner]

One respondent suggested that medical practitioners simply would not complete the forms.

Variability Due to Eligibility Interpretations

Again, similar to responses received elsewhere, variability was also seen as possible due to differences in how individuals interpret what is a progressive disease and what is 'terminal':

"Despite the attempt at thorough guidance, defining who is terminally ill and appropriate for this benefit will still be open to a huge amount of interpretation." [Registered Medical Practitioner]

"…we are concerned by the inconsistencies within the Guidance, and the resulting lack of clarity in for clinicians as to their responsibilities when defining a patient as eligible for BASRiS…Any revised definition of special rules, or criteria for qualification, should provide the clinicians who are expected to implement it with clear, understandable guidance against with they can make judgments." [Macmillan Cancer Support]

Loosening of the definition was seen by one as inevitably having the opposite effect of reducing variability and, indeed, two organisations suggested that this may be a positive feature if it meant that more people who could benefit from the assistance were reached (albeit not necessarily in a consistent way):

"…the Guidance will lead to people with a wider range of diagnosis gaining access to benefits under special rules, and this is welcome." [Scottish Partnership for Palliative Care]

"While we believe and welcome that the Guidance will lead to people with a wider range of diagnosis (or undiagnosed conditions) gaining access to benefits under special rules, we are not convinced that it will reduce unwanted variation as currently drafted." [Children's Hospices Across Scotland (CHAS)]

Variability Due to Cost

In addition to concerns about how eligibility may be differently understood between practitioners, one respondent suggested that there may be variability due to cost concerns, i.e. that some practitioners may be concerned that they are applying the rules too broadly and curtail applications as a result:

"As it stands, this Guidance is likely to create substantial and undesirable levels of variation in how doctors assess eligibility for BASRiS forms. Some will take the absence of any robust guidance as enabling them to apply the broadest possible definition of terminal illness while others will feel they are expected to police the system in order to ensure costs do not spiral out of control so that support remains there for those who clearly need it. While there will always be some degree of variation in a system that relies on an individual's judgement, the Guidance as it currently stands means that this variability will be far more extensive than it needs to be." [British Medical Association (BMA)]

This may be exacerbated by concerns among practitioners that eligibility for BASRiS may be perceived as a gateway to other benefits. One respondent suggested that workloads and associated costs may increase due to more people considering themselves to be eligible for assistance:

"…the removal of qualifying time period may encourage the public to present at the GP on the basis of self-belief of having something 'terminal' and this could cause an increase in workload and pressure on the GP, especially when nursing staff are not afforded the authority to make a decision around BASRiS." [RCGP Scotland]

Also linked to cost was the issue that Registered Medical Practitioners would charge for BASRiS form completion, whereas completion of the existing DS1500 by nurses incurred no such charge:

"Nurse specialists under current legislation can complete a DS1500 for patients who have a life expectancy less than six months. This document is completed efficiently by nurse specialists, to the benefit of patients and at no charge, which is of benefit to the government and the Scottish public. Registered Medical Practitioners charge a fee, which will also generate additional administration costs." [Other Healthcare Professional]

Concerns around the costs of administration may, therefore, lead to variability.

Possible Reductions

Those who felt that the Guidance (if followed) may reduce variability primarily agreed on the basis that it would reduce risk of delay due to removing professional worries about making prognostic judgements:

"This is a major step to avoid inequity as it reduces risk of delay due to professional worries about making prognostic judgements and prioritises people with progressively increasing care and support needs." [Registered Medical Practitioner]

"This will make the DS1500 process better for patients - prognosis can be extremely difficult to predict and can disadvantage patients and their families who may live with an incurable, progressive illness for some time and endure significant financial hardship and related anxiety while dealing with the effects of treatment on their lives that preclude from working." [Registered Medical Practitioner]

These were, however, minority views.

Evidencing and Monitoring Variability

Several respondents indicated that they were unsure if variability would be reduced, mainly because this would be difficult to evidence. Three organisations suggested that data on decision-making consistency and how long it takes to make a determination should be collected and published. This would demonstrate variability in implementation which could then be addressed, it was felt. Another organisation suggested that it may be helpful to track and publish condition-specific data about which groups of people are accessing benefits under special rules (so that Guidance could be modified if inequalities in access become apparent):

"So that we are fully aware of any variability in implementation, detailed data on BASRiS awards by Registered Medical Practitioners should be collated and publicly reported. Any variation should be analysed and addressed." [MND Scotland]

"…we believe that there needs to be robust data collection and analysis of awards by practitioner to help ensure consistency of application. There should be regular review of the data and the guidelines to ensure that indicators and support for clinicians allows for consistent application of the legislation to ensure that terminally ill people get the support they need." [Marie Curie]

One respondent also suggested that some facilitated learning be put in place once the process was introduced to promote equity and ensure that people do not miss out due to differences between practitioners in interpreting the Guidance.

Overall, there was a strong sense that, while the Guidance could or should support clinicians to feel more confident, implementation would always be subjective and be at the discretion of medical professionals.



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