Seeing the end of life with peace of mind The reality of most people’s experience at the end of their lives Dr Kathryn Mannix
Times:-
Sir, The debate in these pages reads as though there is only “a good death” or unbearable suffering at the end of life (“Be honest about the dying process”, letter, July 21). This may reflect the strong feelings of the contributors, but it does not reflect the reality of most people’s experience at the end of their lives.
As a palliative care doctor for the past 23 years, I have seen the journey towards the end of life at close quarters for in excess of 5,000 people. Work in palliative care involves meeting each of these people as individuals. There is no “one size fits all”. Some people wish above all for relief from physical symptoms, and the attention to detail that the science of palliative medicine has brought to the practice of palliative care has enabled us to improve management of breathlessness, nausea, diarrhoea, itch and many other symptoms, as well as a continuing improvement in our ability to diagnose and manage causes of pain. Physical symptoms, though, are only one aspect of palliation.
The emotional journey that people follow once it is known that they have a life-threatening illness is complex and personal. For some there is initial horror and dread, for others there is sadness and regret, and for others there is anxiety and fear. These are normal and natural reactions to such bad news, and most people move through this period of profound emotional disturbance to a calmer frame of mind where pleasure and joy are still part of their daily experience, even if punctuated by some sadness at the transience of life or anxiety about the uncertain future. A few get stuck in their emotional distress, and palliative care practitioners would see this as an emotional symptom just as important to address as any physical symptom.
In parallel with these issues, each person is on a spiritual journey through which they interpret the meaning of their lives. For some this is a religiously based belief, while for others it is about personal worth and contribution to ideals they hold dear, such as family life, care for the environment or world justice. In palliative care we seek to support them in reaching their own inner peace as they measure their triumphs and failings against their own set of ideals.
For some, physical symptoms are few, emotional adjustment proceeds smoothly and their spiritual framework consoles them and contributes to their resilience. For others, difficulties may arise transiently in any one of these domains, and may be met by personal resources or may require additional support from a variety of health, psychological or spiritual advisers. For a few, difficulties in one or more of these domains are severe, and specialist support from palliative care teams may be required.
In other words, this is just real life. Some people appear to get by easily and meet few difficulties; others encounter difficulties and meet them with success; others need help to manage their difficulties and a few get stuck. As a society, we have developed resources to assist people in difficulty. We have not previously proposed that a useful response to being stuck in a difficult position is to offer premature death as an alternative.
I am saddened by the number of contributors who feel anxious about dying. Perhaps they have been witness to one of the unusual difficult deaths that do still occur, or perhaps the way in which our society has increasingly hidden death away over the past five decades has deprived them of the comfort that comes from repeatedly seeing the end of life well-lived with courage, pleasure in each day and peace of mind despite the imminence of the unknown.
Witnesses of good deaths do not appear to feel a need to enter into this type of correspondence. This unfortunately means that the difficult and tragic is overrepresented in the discussion. How can we redress this balance, so that we do not misunderstand and fear death as a society, and thus legislate in ignorance based on fear?
Kathryn Mannix,
Consultant in Palliative Medicine,
Newcastle upon Tyne Hospitals and Marie Curie Hospice, Newcastle
Tags: Science & Medical