Safeguards in the redrafted Terminally Ill (Adults) Bill: still woefully inadequate

Just before the second reading of the Kim Leadbeater’s Terminally Ill (Adults) Bill I made a note of the ten questions I would want answered before I could be convinced – at even a minimum threshold of certainty – that all safeguards had been carefully thought about and introduced.

Now the bill is back, to be presented at report stage and then voted on at 3^rd reading within the next few weeks. My questions weren’t originally conceived to give a score, but to give an idea of how far off the bill is I have gone for a score out of 10, with half marks for a partial response and no marks if the response has been left to later regulations or a code of practice to be written by the Secretary of State – marks only for what’s on the face of the bill.

My conclusion = 2/10, straight fail – resit needed. Here’s why…

1. How is safe, competent medical practice ensured? Score 0

Experience elsewhere indicates a need for expertise in elderly care, palliative care or psychiatry. True independence is hard when only 1% of doctors are willing to participate.

…expertise of two main doctors left to SoS. The psychiatrist on the panel can come from any sub-specialty and needn’t be of consultant status. No requirement for expert assessment even if applicant identified as have a learning disability or as being liable to detention under the Mental Health Act.

2. How will safe “assistance” be ensured? Score 0

What drugs can a doctor administer for unpleasant side effects, delayed or unachieved death? What does use of a “medical device” and assistance in using it mean?

…Nine of this clarified at all in the bill

3. How will informed consent be ensured? Score 1/2

Consent in health care requires informed understanding of what is proposed, its potential complications and side effects, and alternative interventions.

…the bill indicates that the nature of the substances to be provided and their action must be explained but says nothing about side effects or complications. The doctor is required to discuss the person’s wishes in relation to complications without requiring that the nature of such complications has been previously explained in detail.

In relation to explaining the nature of the proposed procedures there are three under-specified areas:

1. the nature of assistance in use of a medical device is not clear – for example in the case of somebody sufficiently disabled that they require a proxy signatory;
2. what actions can or cannot legally be taken in the event of greatly prolonged time to death or even failure to die, especially if the person has been rendered unfit by initial actions;
3. GMC guidance lists other examples of information that might be relevant as including “whether an option is an innovative treatment designed specifically for the person’s benefit.” Since there is no standardised medication regime with regulatory approval for use in physician assisted suicide and there is wide and changing variation in practice³ then any proposed prescription seems to fall within this remit.

4. Is there adequate ability for healthcare professionals and organisations (such as care homes) to opt out? Score 1/2

…The bill makes it clear that individuals need not participate beyond explaining to the applicant where they go if they want assisted suicide but does not allow for organisational opt out.

5. What aspects of assessment are mandated? Score 0

There is more to assessing somebody who wants to kill themselves than checking mental capacity and lack of coercion – a comprehensive personal and social history; interviewing a family member or close other; the GP and, as relevant, a key specialist.

…The bill sticks with the absurd and dangerous idea that all that’s needed is to check whether somebody is competent to make a decision, not why. No further information gathering is mandated.

6. What requirements are there for integrated medical record keeping and review? Score 1/2

What detailed recording of the assessment is mandated?

…The coordinating doctor is now required to ensure that their assessments and declarations are included in the medical record, but not that any more substantial assessment or further exploration has been undertaken.

7. How will clinical practice be supervised or monitored? Score 0

Adequate oversight can’t easily happen in a standalone service.

…Particularly important given that it has emerged that assisted suicide may be organised in the private sector. There is no mention at all of appraisal of medical practice. Oversight by the panels does not mandate an independent assessment of the applicant by each panel member (as happens eg in mental health review tribunals) and the commissioner’s review  will be bureaucratic, to ensure the letter of the bill is followed. No means of checking on concerning medical practice.

8. Requirements to monitor and report outcomes of the programme, for audit and quality control. Score 1/2

What wider psychological and social features will be recorded of those who die by assisted suicide? Is there a formal mechanism for responding promptly to adverse events?

…The bill requires that an annual report by the commissioner and that must include a note of persons who have died by assisted suicide and who had protected characteristics (an irony that escapes the drafters) but not how they will be identified. “Any other description of persons…” to be specified by the Secretary of State, a challenge since collection of the relevant information isn’t mandated.

9. Monitoring impacts on others. Score 0

Family outcomes and the impact on staff may be long-lasting.

…Doesn’t get a mention.

10. Is there a formal complaints and feedback process? Score 0

…Doesn’t get a mention. The medical examiner is required to interview a family member but the examiner isn’t mentioned in the bill, there is no requirement for the commissioner to share information with them and there is no mechanism for their findings to make their way into the process.