Supreme court decision on withholding food and drink in PVS cases

The BBC report on the ruling by the Supreme Court that legal permission will no longer be required to end care for patients in a long-term permanent vegetative state. The decision applies to patients who are being kept alive by artificial means such as tube feeding and hydration. It means that when family and doctors agree, a court decision is not required in order to stop these artificial means of keeping a patient alive.

We welcome this clarification, which upholds an earlier ruling in a lower court. As with our comments at that time, MDMD warns that this should not be interpreted as making Advance Decisions any less important. The ruling does not cover the case when family and doctors disagree, also, an Advance Decision can provide a legally binding refusal of treatment in cases where doctors and family agree to continue treatment, if that is not what the patient has stated they want. Even in cases where everyone is in agreement, an Advance Decision makes these incredibly difficult decisions much easier and safer for all concerned. With an Advance Decision, doctors and relatives have documented evidence of what the patient wants for themselves, so they do not have to try to decide what is in the patient’s best interests, based on little, or incomplete, information of the patient’s wishes.

If you haven’t completed your own Advance Decision, MDMD strongly suggests that you do so as soon as possible, regardless of age or health. See our information and references to other organisations on this here. We also recommend having periodic discussions with your next of kin about your end of life wishes. Some suggestions for how to do this are given here.

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Scottish Parliament removes time limit in definition of “terminally ill”

MDMD are delighted to learn that the Scottish parliament has removed any time limit from its definition of “terminally ill” in their Social Security (Scotland) Act 2018.  The story was reported by the BBC and the Guardian.

The Guardian article states “There were a number of significant last-minute amendments to the legislation, including the removal of any time limit on terminal illness. It was brought by the social security minister, Jeane Freeman, after senior medical professionals called for its inclusion. Current rules for disability benefits and universal credit say a patient must have six months or less to live before their illness is classed as terminal.

In the debates over right-to-die legislation, “terminal illness” is also one of the possible criteria that has been considered, and is used in some jurisdictions such as Oregon and other US states where assisted dying is legal, (but not closer to home in Switzerland, the Netherlands or Belgium). In the right-to-die context in the UK the medical community have argued that a 6-month criterion is impossible for them to accurately determine, and would make the working of right-to-die legislation impossible for them. It is good to see this medical argument now being applied to other uses of the 6-month criterion, if only limited to Scotland at present.

The relevant wording from the Scottish Act is “… an individual is to be regarded as having a terminal illness for the purpose of determining entitlement to disability assistance if, having had regard to [guidelines issued by the Chief Medical Officer], it is the clinical judgement of a registered medical practitioner that the individual has a progressive disease that can reasonably be expected to cause the individual’s death.”

Given that dementia is the leading cause of death in England and Wales, it seems clear that dementia should now qualify as a “terminal illness” in Scotland, for this legislation, at least by the time that it seriously impacts a person’s ability to live independently. MDMD has always argued that dementia should be considered an acceptable reason for requesting a medically assisted suicide, by someone who still retains mental capacity, and that consequently any six-month criterion is too restrictive. The change in interpretation of “terminally ill” in Scotland is a small sign of movement towards a better understanding of this issue. We hope that in England and Wales, senior medical professionals will follow their Scottish counterparts in causing a similar redefinition.

We hope that those organisations campaigning for a change in the law on assisted dying in Scotland will now broaden their campaign to fully embrace the new Scottish definition of “terminally ill”, if their policy does not currently endorse this. This would help gain the support from those in the medical community in Scotland who argued for the redefinition.

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