It is truly a great British innovation – with its emphasis on patient comfort in the fullest sense, symptom control, emotional support, and care at home where possible. There is much to celebrate in this achievement.
Yet good as most palliative care is, for some patients there remain problems at the end of life to which even the best palliative care has no answer. Evidence already exists in medical literature describing patients dying in distressing circumstances despite the very best palliative care. This is also borne out in both my personal and professional experience. As a member of Healthcare Professionals for Assisted Dying I have had the opportunity to hear from many other professionals with similar experiences of unrelieved suffering in their terminally ill patients.
Reg Pyne’s story
One story illustrates the kind of problems which patients and their families have endured in coping with distressing symptoms and complex medical attempts to remedy them. Reg Pyne has shared with us the story of his wife Maureen. Both Reg and Maureen worked as NHS nurses until their retirement, but she was unable to have the dignified and peaceful death she wanted.
As Reg recounted:
“Maureen became gravely ill quite suddenly in June 2008. Some problems were experienced in establishing a diagnosis, but after insisting on another medical opinion in another hospital the cause of her illness was made clear. Causing no apparent symptoms, a cystic tumour had been growing in the head of the pancreas. The good news was that it was benign. The bad news was that it was deemed inoperable as it was wrapped tightly around a major blood vessel. The treatment undertaken by the surgeon [by endotracheal route] was to insert a plastic stent in the bile duct. This proved rapidly effective. We were told that the stent would probably remain patent for 6 or 7 months and when it blocked it would be replaced. We were also told that this was a ‘living with it’ condition and that, in a fairly small percentage of cases, a tumour of this kind and location had a propensity to become malignant. Maureen got on with living an interesting life.
The first stent lasted 7 months and when it blocked Maureen suddenly became very ill, requiring emergency admission to hospital. From that point on, the interval between a stent being fitted or replaced steadily became shorter and the same unpleasant ERCP procedure was used to replace it. Recovery was good after each intervention, but always never to the pre-crisis level. Meanwhile the tumour was growing and exerting its pressure on other internal organs. At some stage our GP Practice engaged the assistance of our local hospice. From that point Maureen had the benefit of unhurried visits from two of the hospice’s wonderful specialist community nurses. Their knowledge and skill in pain management was of a high order and as the pain experienced increased the results of their recommendations conveyed to the GP resulted in rapid amendments to the prescriptions for pain and associated symptoms. Maureen was referred to a specialist in a London Teaching hospital. Using open surgery he confirmed that the tumour could not be removed and that any attempt would cause catastrophic blood loss. He removed the by then much traumatised bile duct and gall bladder and created a by-pass gathering the bile from the liver and feeding it into the gut lower down. This put a stop to the emergency admission, but the pain caused by that space occupying lesion continued as did the reviews of medication to deal with the pain and associated symptoms.
In late July Maureen became much less well and was admitted to hospital as an emergency with a range of new symptoms. The investigations conducted revealed that the pancreatic tumour had now not only enlarged and become malignant but had deposited secondaries in both liver and lungs. The oncologist explained that the only possible treatment was chemotherapy the only possible treatment but that Maureen was not fit enough to receive it at that stage, adding that even if she became fitter chemotherapy would be very unpleasant and add only 2-4 weeks to life. In spite of the knowledge and skills of the hospice practitioners, Maureen’s pain became steadily worse and out of control. From October she was asking how much longer she had to endure this screaming for it to be over. Pain control for her was not effective in spite of the attention of pain control specialists. After only 2 days she was beyond conversation. Fifteen days after admission to the hospice she died without the capacity to say goodbye. She could refuse medications, knowing that to do so would lead to her death and recorded this in her Advance Decision document. But she could not choose the circumstances or method of her death. In hospitals we had seen too many bad deaths and also lives that ended by the use of very large doses of ‘painkillers’, not discussed with patients, but which would knowingly advance death but under the ‘thearapeutic’ label.
Maureen wanted, if and when she chose, to be able to die at home, legally and through physician assistance, with her family around, and able to say a civilised and celebratory goodbye. So what I have to ask is this? Why is it that this is unlawful, yet her death as I have described it is within the law. Maureen wanted the first option. She accepted the latter as second best.”
In my view society can no longer ignore this small but significant group of patients in great distress. Not only are these patients deserving of recognition in their own right but their suffering deserves to be acknowledged in the wider debate concerning end-of-life care in Britain.
Support for The Assisted Dying Bill
This is why I am supporting Lord Falconer’s Assisted Dying Bill – which would enable terminally ill patients (with 6 months or less to live) who are mentally competent to be prescribed and self-administer lethal medication at the time of their choosing. Within strict safeguards this would not lead to any greater number of people dying, but would mean less suffering for those terminally ill patients whose drawn out dying process cannot be mitigated by even the very best palliative care.
Healthcare Professionals for Assisted Dying campaigns for the right for terminally ill patients to have the option of an assisted death alongside high quality palliative care. If you are a healthcare professional you can join us free of charge and add your voice to help make this become a reality, supporting the Assisted Dying Bill