I beg to move, that this House has considered e-petition 604383, relating to assisted dying.
It is a pleasure to serve under your chairmanship, Sir Roger.
Assisted dying is an emotive issue that I have thought about long and hard. I was grateful to the Petitions Committee and also to the creator of the petition, Sarah Wootton, for arranging a meeting with some of the families who have been through traumatic and upsetting experiences. I was really pleased to have the opportunity to speak to Liz Carr, who has long campaigned against the introduction of assisted dying. Both meetings were very emotional, but I was able to get a much better understanding of the situation by having those important conversations, so I am extremely grateful to Emma from the Petitions Committee for organising them.
My role today is to present this petition on behalf of the Committee, but I hope that I will be able to represent fairly the views of those I met. It was a real honour last week to meet the families who are here today in the room. Hearing their stories was emotional and informative. They spoke with dignity about their loved ones’ final days and weeks, and I am glad to see them here today. I hope that when making interventions in this debate Members will be mindful that this is a very real situation for many people here today. I also hope that Members will allow me the time to tell their stories without interruption. I understand that colleagues will want to make their own points, but plenty of time has been put aside for the debate this afternoon.
Opinion polls have shown that there is wide support for a change in the law to make assisted dying legal in this country. Research commissioned by Dignity in Dying in 2019 showed that 84% of Britons supported assisted dying for terminally ill people. That is a huge proportion of people who would like to see a change in the way we deal with this situation.
We have not had a debate on this issue in this place for two and a half years, and there has been no vote on it for seven. A lot has changed in that time, including a pandemic that has shifted the conversation that the country is having about death. There has also been a change in attitudes in other countries and in other parts of the United Kingdom. Jersey, Scotland and the Isle of Man are all looking at changes. Australia, New Zealand, Spain and others have all introduced measures around assisted dying.
In our meeting, we spoke to Jan and her daughter Sarah. Jan is currently planning for the end of her life after receiving a terminal diagnosis. She explained to me that she has three options: going to a hospice, ending her life in a hospital, or receiving hospice care at home. Jan is worried that hospice at home care will cause untold problems for her family. Not only will it mean that her loved ones are largely responsible for her care in her final days, but there are long-term effects of the trauma that her dying at home will cause. Jan is worried that hospice care will not be appropriate and there will be limits on the number of people who will be able to visit her at the end of her life. Jan said that it would not be a good place for her to die. All she wants is a choice of a peaceful end surrounded those she loves.
With no other viable option, Jan has signed up to Dignitas, so that when it comes, she has a choice about her end of life. That in itself causes problems, as she would probably have to do it before she is ready because she needs to travel independently. Jan and her daughter both spoke of the anxiety that it has caused them and their loved ones. The worry and anguish that the decision causes for many families was a theme through all the stories that I heard.
I spoke to Carol, whose sister Alison died just over a year ago. Alison had head and neck cancer. She was only 63 years old. Her sister went through lots of treatment—radiotherapy and chemotherapy—and was given lots of opiates to deal with the pain. Alison was persuaded to go to a hospice for the end of life care that she needed, but only after her pain and anxiety became unmanageable. At the hospice, Carol noticed that the care that Alison was receiving was governed by strict protocols that were not appropriate for Alison’s needs.
As a retired doctor, Carol thought that she would be able to advocate well for her sister, but that did not turn out to be the case. Alison saw eight different doctors in two months while she was at the hospice. She was given different information by different people. Some agency staff were not sufficiently trained in palliative care to look after Alison as well as they could. Protocols dictated that pain relief medication could only be increased by 25% in every 24 hours, but Alison had built up a tolerance to opiates over the course of her illness and was in an incredible amount of pain. All those things culminated in what Carol described as a horrible death, which left everyone traumatised—Alison’s husband and children, and Carol, too. Alison’s family stayed with her 24 hours a day in the last couple of weeks because she was so anxious about a lack of medicine.
I also met Gareth. Gareth’s dad had prostate cancer. He lived for 10 years on hormone treatment. When he was given his diagnosis, as a military man who always had guns, he said, “I’ll just shoot myself.” No one thought he was serious, but Gareth said that it gave him an element of control. As his illness got worse, Gareth said it was like his dad was “dying in front of our eyes.” He had no quality of life.
Finally, Gareth’s dad said that he was ready to go into a hospice, but that did not seem to be his intention. One day, Gareth’s dad rang him to say that he could not deal with another night like the last one and said, “I’m going to shoot myself. See ya.” Gareth immediately rang his dad back, but his dad did not speak. Gareth rang the police. He spoke to his sister, who lived close by, and she rushed to her dad’s house. Gareth’s sister went in, hoping that she would be in time to stop her dad, but he had already shot himself in the head.
Gareth’s sister’s husband was also, at the time, terminally ill with brain cancer. She and her daughters then had to watch her husband die at home after he stopped all his medication. That took a week. Gareth’s sister now suffers from post-traumatic stress disorder, and his nieces are traumatised by the experience. Gareth wants people to be more open in their conversations about death. Speaking about death and not being afraid to discuss it can only lead to better decisions for everyone.
Susan’s husband, Duncan, was diagnosed with motor neurone disease, which we all know has no cure. Susan described Duncan as a very strong character who, after researching MND, determined straightaway that he was going to be in control of his own death. Until he had a plan in place, he was distressed and unhappy, but once he had a plan, he could start to live again. Three years after his diagnosis, Duncan took his own life at home with help from Susan. He left information for the police about how and why he had done it. Although his intention had been to do it when Susan was not at home, Susan said that, after 42 years of very happy marriage, she could not not be there for him at the end.
Despite the information that Duncan left, it was six months before the Crown Prosecution Service deemed that it was not in the public interest to prosecute Susan. She was interviewed for six hours under caution by the police, which, after the death of her husband, was obviously very distressing. I cannot imagine how it must feel to have something like that hanging over you when you should be grieving the loss of a loved one. Susan had the means to fight these charges and her solicitor eventually got her arrest removed from her record. What happens to someone who does not have the money to stand up to a criminal justice system that demonises people who find themselves in this invidious position?
Susan also believes that because Duncan made his intentions clear, the doctor seemed reluctant to give him drugs to help him sleep, which exacerbated his problems. Ultimately, Susan takes comfort in the fact that Duncan got the death he wanted. However, it is a tragedy that his death was not within the law. We know that people falling foul of the criminal justice system is not uncommon in situations where someone ends their life, but empathy and sensitivity are required in these situations—not the heavy-handed approach we have seen too often.
Tim was a carer to his friend, David, who also had motor neurone disease. Within two days of his diagnosis, David had signed up to Dignitas. It was more than two and a half years before he died, after travelling to Switzerland. There is only one end to a diagnosis of MND, and David was not willing to be trapped in his body while his brain was still functioning. By making the decision to join Dignitas, David had some peace of mind. However, even with his membership, the process was not always easy; information was not forthcoming until certain points in David’s illness, and the full picture was not available until they reached Switzerland.
It would have been so much easier if David could have done it at home. At home, the only option David was given was to be sedated for three weeks while his body shut down—as Tim said, prolonging the suffering. When Tim spoke about the inevitability of David’s death, he said that doctors were willing to prolong his life to the extent where the consequences were not worth it. Pain was not really an issue for David, but the suffering that he went through—not being able to sleep due to choking; having to be fed through a tube in his stomach—was unbearable.
Throughout this process, all participants have spoken of the anxiety that they faced because they or their loved ones did not have the option of assisted dying. As Jan said in her contribution, knowing that there is an option for assisted dying is an insurance policy: it may not be something you decide to do in the end, but having it there is a comfort. We have to consider the impact on the families who are left behind. Having to watch a loved one die is never easy, but prolonging the suffering can lead to trauma and PTSD for families and friends. I have already spoken on the record about my father dying.
Tim said that palliative care can mitigate some of the pain, but it can never mitigate the suffering. This seems to be so true. Even the best palliative care cannot make.
I am also grateful to Liz Carr for taking the time to speak to me on Friday evening. The worries that Liz and other campaigners have need to be heard, and I believe we have a duty as Members of Parliament to open up this debate and listen to all sides. There are so many debates where people are very polarised in their arguments, particularly in this House, and I feel very strongly that both sides should be heard and that we should listen to everyone.
Liz talked about Daniel James, a rugby player who was paralysed from the chest down in a rugby accident. Liz is disabled and a well-known actress and campaigner. She explained that, without exception, the press coverage said that Daniel had been brave, stressing how tragic it was that this man had been cut down in the prime of his life. Liz wanted to make the point that there was another side to the story that had not been told. People with a disability are seen as something to be pitied and as people who will never live a full life. I want to make clear today that I do not believe that. There are people with disabilities who make invaluable contributions to British life, and we should listen to them and their concerns.
Being disabled does not mean living a second-class life. I cannot even begin to understand how being considered in that way would make somebody feel. There are bigger problems in the health service, however, including dehumanising treatment—such as when someone waits hours for a carer to visit to take them to the toilet—and insufficient pain relief because the National Institute for Health and Care Excellence has made an economic decision about someone’s worth versus the cost. That is what we faced as a family—I have experienced it.
Liz also raised concerns about trust in the healthcare system. She said:
“The NHS has both saved my life, and destroyed my life.”
If we want to have a grown-up conversation about death, we need absolute commitment to properly funding end-of-life care and hospices. Some on the Government side will say that they are campaigning for “dying well”. They are in a position to make that happen, so I say to them: please do so. The palliative care system has been underfunded; rather than talking about dying well, please do something about that. As Liz said, it is outrageous that hospices are mainly charity funded. If we want people to be able to die well, let us fund palliative care, give people options and make everyone feel valued at the end of their life.
One word that I have not yet used in my speech is “autonomy”—deliberately so, because I had it explained to me in a way that I had never previously considered. I have always been a great believer in the idea that it is my body and I will do I want with it, thank you very much, but Liz said that disabled people can embody what most people are afraid of: a lack of autonomy and a loss of dignity. That understandably frightens many disabled people. When you think society does not value you, or that it considers you a burden, you must fear that society will find a way to rid itself of that burden.
I thank everyone who has spoken to me. It is amazing to see Westminster Hall packed with people who care about their death and the deaths of their loved ones, however they wish for it to end. The petition is very important to me and many others. We need a calm and clear conversation. Will the Minister find a way for the Select Committee to hold an inquiry on it, and will he take the time to meet some of the campaigners who took the time to speak to me? Their voices have to be heard, and the least we can do is hear them and make informed choices about where we go from here. Most importantly, it is for parliamentarians to debate and discuss future legislative opportunities.
In conclusion, I thank everyone. I understand the strength of feeling that this issue evokes, and I look forward to listening to a meaningful discussion this afternoon.
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