WITH THE END IN MIND

The author is among the pioneer of new discipline of palliative medicine. Palliative care is a specialized medical care that focuses on providing relief from pain and other symptoms of a serious illness. The availability of palliative care does not depend on whether your condition can be cured. She also qualified as a cognitive behaviour therapist in 1993 and started UK’s first CBT clinic exclusively for palliative care patients and devised ‘CBT First Aid’ for palliative care workers.

According to her, we should regard death as similar importance as birth :

“Watching dying is like watching birth: in both, there are recognisable stages in a progression of changes towards the anticipated outcome. Mainly, both processes can proceed safely without intervention, as any wise midwife knows. In fact, normal birth is probably more uncomfortable than normal dying, yet people have come to associate the idea of dying with pain and indignity that are rarely the case.

Similarly, discussing what to expect during dying, and understanding that the process is predictable and usually reasonably comfortable, is of comfort and support to dying people and those who love them.”

This book tells stories about the palliative patients encountered by the author during four decades of her clinical practice. One story is about Max, a human right lawyer with Motor Neurone Disease (MND), who was on home ventilator :

“First, the ethical considerations. Is withdrawal of treatment that results in Max's death the same as killing him? Well, if he lived at a time or in a country without access to ventilation, he would have died of his initial chest infection; we would not have said he died of 'not being ventilated'. If he had exercised his right not to be ventilated when his MND made him unable to support himself unaided, we would have said that he was dying of respiratory failure caused by MND. The fact that he has accepted ventilation for ten years does not change the fact that ventilation is an invasive treatment, and that he has a right to decline it at any time and for any reason.”

Then the story of Ujjal, a terminal cancer patient, transferred from a Dutch Hospital. Here, she discusses the issue of euthanasia (mercy killing) :

“The possibility of allowing euthanasia, without prosecuting doctors who follow a strict set of rules, is permitted in the Netherlands to provide a legal escape route from unbearable suffering towards the end of life, and Ujjal had admired the Dutch pragmatism that enabled this practice. Yet once the possibility of euthanasia was raised for him, he found that he was afraid to admit to new symptoms, in case euthanasia rather than symptom management was recommended. His conversations with his doctors developed a new tone: their sense of helplessness in the face of his symptoms, and hopelessness at his prognosis, communicated itself to him. He perceived a preference to control the uncertainty of his disease progression by accelerating his death. Ujjal ran away from that certain, controlled dying to live with the hope of uncertainty. It was a compromise that might break his body, yet save his sanity. He had experienced an unintended and chilling consequence of an entirely humanitarian change in legislation.”

The amazing role of Macmillan Nurses, a specialised palliative nurses, especially in managing terminally ill children, is explained brilliantly :

“Then these nurses offer a palliative care service aimed at keeping life as normal as possible for as long as possible. They visit the children at home, and advise parents on nutrition, exercise, school attendance, symptom management, and how to discuss the illness and its implications both with the patient and with other family members, including brothers and sisters. They advise the GP and community children's nurses about palliative and end-of-life care, because most GPs will not have experienced this before. And they support teachers who are, in turn, supporting a class of children who are anticipating, and then mourning, the death of one of their classmates. What a job.”

Her last words :

“As we approach the ends of our lives, we experience a shift in perspective that allows us to focus on the most important things in our own domain. This shift is both poignant and freeing, as these stories illustrate. Living is precious, and is perhaps best appreciated when we live with the end in mind.”

I believe Dr Mannix has answered most of the important questions about the process of dying with honesty and humanity.