Written evidence submitted by Dignity in Dying (DEL0253)

Introduction: Dignity in Dying

Dignity in Dying campaigns for greater choice, control and access to services at the end of life. We advocate providing terminally ill, mentally competent adults with the option of an assisted death, within strict legal safeguards, and for universal access to high quality end-of-life care.

The largest poll ever conducted on the issue of assisted dying in Britain found that 84% of adults support a change in the law.[1] As this very high level of support suggests, Dignity in Dying has hundreds of thousands of supporters across the country. Many support the campaign due to their own experience of living with a terminal illness or of caring for a dying loved one.

Advance care planning 

We endorse the evidence submitted by our sister charity Compassion in Dying in relation to advance care planning: in summary this demonstrates that the pandemic has exposed ongoing barriers to people planning their future care and treatment, including low public awareness, and lack of knowledge and poor communication by doctors. However the pandemic has also prompted some excellent partnership work between clinicians, their organisations and the voluntary sector, and alongside this public interest in advance care planning has surged.

These positive developments must continue to be fostered after the pandemic. Advance care planning results in significant benefits for individuals and care providers: in addition to increased satisfaction with overall care, people receive fewer aggressive medical interventions, have fewer hospital admissions and benefit from increased use of palliative care services, and communication between patients, their doctors and families is enhanced.[2]

Changes to regulation of medicines

It was recently reported that the president of the Royal College of GPs, Professor Martin Marshall, had written to the Home Secretary calling for regulations on the use of controlled drugs to be changed for the duration of the Covid-19 crisis to facilitate the “more efficient and ethical supply” of drugs such as morphine, that can help alleviate the suffering of dying people. The letter was reported as stating that the combination of localised supply shortages and strict drug control regulations had made it more difficult for carers to obtain drugs to provide pain relief as patients enter the final hours of their lives: “We are aware of incidences where this has caused significant and unnecessary distress and pain to patients and their families at the end of their lives”.[3]

We welcome the subsequent regulatory changes made through the Misuse of Drugs (Coronavirus) (Amendments Relating to the Supply of Controlled Drugs During a Pandemic etc.) Regulations 2020[4] which together with the Department of Health and Social Care guidance[5] on the re-use of medication should result in much quicker access to end-of-life drugs for people being cared for in the community. We also welcome the new guidance that has been produced by The British Geriatric Society, Hospice UK and others around provision of anticipatory medicine for those approaching the end of life during the pandemic.[6]

People approaching the end of life whether due to Covid-19 or other illnesses must not be left to suffer with pain and other distressing symptoms due to delays in accessing appropriate medications. Dignity in Dying strongly recommends that the updated regulations and guidance are not rescinded once the pandemic has passed, but reviewed and developed to fits the needs of dying people.

The need for an inquiry

The changes made to regulations on drugs used at the end of life and changes to guidance around anticipatory prescribing will undoubtedly help many people. However it is important to acknowledge that these changes cannot and will not alleviate all of the suffering experienced by dying people.

Last year Dignity in Dying published a report which demonstrated unequivocally that many people do suffer as they die, even with the best possible palliative care.[7] Our report included new research from the Office of Health Economics (OHE), which concluded that even if every dying person who needed it had access to the level of care provided in hospices, 6,394 people a year, equivalent to 17 people a day, would still have no relief of their pain in their final three months of life.[8] The OHE research was clear that this was a conservative estimate. The fact that a small but significant number of people die in a manner in which they may find intolerable is also established in academic literature.[9]

Furthermore we know that before the pandemic one Briton travelled to Switzerland for an assisted death every week, at great financial cost, and risking investigation and potentially prosecution for the crime of assisting suicide for any loved ones who accompanied them.[10] We know many made the journey before they really wanted to die to ensure they would be physically well enough to travel, whilst others considered an assisted death in Switzerland but were unable to afford the high costs of at least £10,000.[11] Dignity in Dying is also aware of many cases of terminally ill people choosing to end their own lives at home, without safeguards or support. There is very little information on this issue but our own research suggests that around 7% of suicides are by terminally ill people, which is approximately 300 suicides every year in England.[12]

With almost all international travel stopped we have to ask what is happening to the British people who would had planned to travel to Switzerland for an assisted death during this period. We are concerned that the numbers of terminally ill people choosing to take matters into their own hands in the absence of any other options may increase during the pandemic.

Our view is that the current law which prevents terminally ill, mentally competent adults from having the option of control over the manner and timing of their death, even if they are suffering unbearably, is not working: it denies dying people choice and fails to offer protection, leaving terminally ill people and their families facing desperate situations.

The RCGP, the Government and many others have acted quickly to address the suffering of people dying in the community during the pandemic. This is welcome. But we must also recognise that there is an ongoing problem in this country for terminally ill people whose suffering cannot be alleviated even when they are receiving the best possible care.

Dignity in Dying believes we need an inquiry into the care of dying people to carefully consider the evidence on dying people’s needs, how well these are being met at the moment and any changes needed. An inquiry by the Health and Social Care Committee could consider the needs of dying people in the round, including suffering that cannot be alleviated through more or better care or pain relief. Such an inquiry should necessarily include a consideration of further developments or changes that could be made to the regulatory framework and health and care systems in order to best meet the needs of dying people, and of the impact of the current lack of assisted dying law for terminally ill people who want that choice.

May 2020