A message to MPs from two palliative care professionals – Ms Gay Lee, Registered Nurse specialising in palliative care, and Dr Richard Scheffer, Retired Consultant in Palliative Medicine and Hospice Medical Director
We write as healthcare professionals who together have many decades experience in palliative care – in hospice, community and hospital – to ask you to support the Assisted Dying Bill when it is debated in the House of Commons on 11th September.
We support a change in the law because we believe in patient-centred care and respecting patients’ wishes in how they want to be treated at the end of life. Having the choice of assisted dying is consistent with these values. We also know that there is some suffering that cannot be relieved, however much excellent palliative care is available. As a hospice CEO wrote in the Guardian recently, for some, assisted dying would offer “choice and control over their situation above and beyond what palliative care can offer”.
We would like to highlight two patients we have cared for which illustrate the need to change the law in this country.
One patient, a 50-year-old man, was suffering from motor neurone disease (MND). When he could still speak, he said that he hoped that his life would be ended when his suffering became unendurable. It was explained that this was not possible as it is illegal, but he was reassured that he would be cared for until his death. When asked what he would find unendurable he said he did not want to end up completely bed bound, incontinent and unable to communicate. Sadly, all these symptoms occurred. He also suffered in other ways he hadn’t expected – an inability to swallow, coughing and choking with each small bit of fluid he took by mouth, and later, when he was bed-bound, the discomfort and pain of muscles that could not be moved voluntarily. He had the best care from his wife and a fantastic primary care team. However, he had to endure suffering that was explicitly against his wishes. Despite having access to the best quality palliative care, nothing could have been done to prevent this.
It is not possible to say exactly how many people suffer like this each year. The National Survey of Bereaved People (VOICES) suggests that even in hospices, where we can assume palliative care is of the highest quality, up to 2% of dying people do not receive relief of their symptoms in the last three months of life. This equates to as many as 6,000 people a year suffering uncontrolled symptoms at the end of life. But suffering encapsulates much more than pain and symptoms; it is often existential in nature, and not easily managed by palliative care.
The second patient also had MND. She was in a hospice for symptom control and could still walk and swallow soft food, but she was terrified about the manner of her dying. She had a very supportive family but spoke frequently and eloquently about her severe anxiety about the future. She never asked the staff directly for help to die nor even tried to discuss the idea.
After being discharged home the hospice staff heard she had travelled to Dignitas, with her family, for assistance to die. Her daughter came to the hospice afterwards and talked informally to nurses about what a positive experience it had been. For her mother to have been able to control the timing of her death and to avoid her worst fears was very important to them. Her daughter felt that Dignitas’s role was sensitively performed, but knew it would have been far better if they could have had that experience without having to travel abroad. If assisted dying were legal in this country, the patient would have had a choice, a chance to discuss the issue and her feelings with hospice staff, and would have had more time to enjoy with her family, instead of going to Dignitas early, while still able to travel.
Every two weeks somebody from this country travels to Dignitas to die and for every person that does this ten more terminally ill people take their own lives in this country, often alone and in distressing circumstances.
Dying people deserve greater clarity around their end-of-life options; they deserve a safeguarded, compassionate law that offers choice and protection. This is why we ask that you support the Assisted Dying Bill.