The United Kingdom is again debating legislation for assisted dying. In late March peers from the House of Lords gave powerful speeches on both sides of the issue in oral evidence in the Health and Social Care Committee.
Charlie Falconer: “There desperately needs to be an improvement in palliative care, but it is absolutely clear that improving palliative care will not resolve the needs of some people to end their life earlier in the context of a terminal illness.”
Sheila Hollins: As a doctor, as a psychiatrist and as a legislator, I am very worried about the unintended consequences … My research in the Netherlands has found that the evidence there is unusual. They actually provide case histories of people who have had euthanasia. … We did not expect to find those in the learning disability and autism community represented among those euthanised, but they were. We found 38 cases, described in our study. This will be an underestimate because they are not all described. We found 38 cases of people with learning disability and/or autism who were euthanised simply because of the symptoms of having a learning disability or autism. That is the sort of safeguard that I am concerned about.
Molly Meacher: (the chair of Dignity in Dying). We know that choice and some control at the end of life will bring tremendous comfort to dying people, relieving unbearable suffering.
Terminal illness brings unbearable suffering in various forms. Obviously, uncontrollable physical pain is one such form. Another is endless nausea and vomiting, maybe because of opioids and an allergy to antiemetics. Another is faecal vomiting which can recur and recur. Another is a fungating tumour, creating the most appalling odour that the patient cannot get away from. Other people do not want to come into the ward because of the odour. The patient cannot leave it.
There may be a complete and utter loss of the ability to move, perhaps because of motor neurone disease. These patients, towards the end of life, are unable to swallow, to speak, to eat or to drink. They are existing; they are not living.
We all want more and better palliative care—of course we do—but however good palliative care is, it will not be able to eliminate the unbearable suffering of many people.
Ilora Finlay: I declare that I am a palliative medicine physician. I have worked in the field since 1987 and I have looked after thousands and thousands of dying patients, as well as of course having my own experience of people very close to me dying.
I have had many, many conversations with people who are dying and people who are in absolute despair. I had a patient back in 1991 who was desperate for euthanasia. Four of us thought that his prognosis was three months. With great difficulty—I was there until 11 at night—I persuaded him that I would try to relieve his symptoms. He said he would give me two weeks before he killed himself.
Eleven years later he phoned me because his wife was dying. She died in my care, with his children at her bedside and him in a wheelchair. He is still alive today. That is just one example of how wrong you can be. I have had many conversations with patients who said, “I never believed that I could feel so much better again.” The one thing that palliative care and assisted dying have in common is that they are very poorly understood, and that is a real problem.
We have the post-Shipman effect with opioids, unfortunately. Clinicians are now reluctant to prescribe the type of dose that many patients need, so it takes a bit longer to get there. As for nausea and vomiting, I have been involved in the research. The situation now is that we can control intestinal obstruction well. The smell from fungating tumours does not happen like it used to. I saw it happen years ago, but not today. Modern medicine has changed.