With The End In Mind – how to live and die well.
There is one thing everyone reading this will have in common, we will come to an end, maybe sooner than we think, and if we are old or ill it is likely to be sooner than them who aren’t, but in the final analysis we do not know when it is. Recently, I went on holiday and as is usually my want I packed a number of books to read and I at least managed to read parts of most. I also discovered a book my wife had packed, titled: “With The End In Mind” by Kathryn Mannix, a doctor who specialises in helping dying patients, with a ton of experience under her belt, and decided to read it.
This is not normally the sort of book I would read, especially as I had judged (wrongly as it turned out) this was intended for medical professionals and social workers and would likely contain a good deal of jargon and long words and an expectation that readers would somehow be familiar with how the system works (or doesn’t) for those who have an illness that is expected to lead to their death in a short (typically days or months) time. But given that I have just reached my three score years and ten allocation, along with a number of ill health related conditions that, while not individually life threatening, between them might well lead to an early death, friends and people around me who I knew well are dying off like flies (typically one per week, compared to one per year in my youth), I find myself helping, e.g. providing moral support and spiritual counsel and sometimes even taking funerals of those whose life expectation had been severely reduced due to their diagnosis, and whether I liked it or not I recognised I had an interest and could learn something. But what really persuaded me to read the book was that my wife is a lung cancer nurse and, while some of her patients live on for years, many die in a short time – usually due to their condition. It seemed to me (borne out upon reading the book) that Nurse Jolly’s experience was not so dissimilar to Doctor Kathryn’s.
The bulk of the book is what might be termed case studies involving individuals who had been diagnosed with a life-threatening disease, typically cancer, but there were many others. Usually, a point had been reached where while life extending measures were often available, there was little to be done barring an act of God to stop the person dying from the illness / condition that had been earlier identified. It was at this point Doctor Kathryn or one of her colleagues were invited in to support those involved in the patient’s care and to oversee their palliative care (typically prescribing pain relief measures) and facilitate and provide psychological support (related to the mental and emotional state of the patient). What became clear right from the outset that every patient was different and while there were generic principles that could / should be applied, it was never a matter of one approach serves all, and every patient needs treating as individuals, with individual preferences etc. I was also struck by the patient centred approach championed.
Regarding the “cases” (individual identities were withheld) it is best for any still interested to get hold of the book and find out for themselves. The best I can do here is to provide a generic summary of what I found out from my reading and the lessons I learned, starting with every individual is different. Not just the disease, where I gather in many cases doctors can often identify what the disease is and based on experience and best practice etc. determine what treatments are suitable, and how best to support and advise patients concerning their life journey, ranging from hours to years (and usually no-one can say how long) yet ending inevitably with death – and not to forget the patient’s family and friends. The other thing that became clear from Doctor Kathryn’s practice (and this is true too with my wife), while it would be an understatement to say the typically deteriorating condition of the patient is often not pleasant and attempts to provide relief come at a cost, the job of the professional dealing with end of life care is to help the patient to find the best ending to their life as possible. Often this involves balancing, e.g. powerful pain relief medicines often means the patient is less a awake than he / she would want e.g. for receiving visitors or when dealing with their affairs. Sometimes it might be keeping the patient alive for as long as possible but at a cost due to drug etc. side effects or accepting a shorter period and letting nature take its course. Sometimes there are “issues” bothering the patient (not always obvious) and part of providing a good as can happen in the circumstances quality of life is to empower the patient to come to terms with these. Sometimes there are things the patient may not have thought off, or inclined to put off, that needs addressing.
I have no doubt those reading my short clumsy perspective might take me to task but at least my reading the book has made me more aware off some of the complexities and intricacies of end-of-life care and will no doubt help me when, unless I go first, next get to meet with those who are dying. What I loved about the book besides its readability was the humility and humanity of its author. It also struck me that she had an excellent work ethic and well combined wisdom and patience. She was quite open to when she got it wrong or might have done better, especially earlier on in her career and was quick to praise those she learned from – other (often more experienced) professionals, those who formed part of the patients support network and often the patients themselves. So many things stand out from reading the cases: how often those reaching end of life turn their attention away from themselves, to others; the challenge of breaking bad news, especially when the patient and his/her family were in denial; relocation of the family pet; working around family conflicts; sensitively dealing with criticisms of how those before had dealt with the needs of the patient; recognising everyone has an often valid perspective and it is not a matter of I am right and you are wrong; the question of euthanasia – still illegal in the UK and doing post mortems when tests and scans etc. did not reveal fully what was the true condition and the causes of pain.
These are but a few and I daresay I could add other items to the list. Besides affecting me mentally, insofar I learned a lot from reading the book, it also affected me emotionally and, while I am not a weepy sort, I found reading some of the stories inclined me to tears. I get the impression that with most of the patients end of life journeys recounted in the book, it ended in a “good” death, thanks in part to the part played by those involved at the end. If there is a message to take from the book, it is to try and make this so, as best we can, with those we deal with at their end of life, whether or not as professionals, and maybe take on board the lessons for when our time has come. Doctor Kathryn should be thanked for providing us with such as useful book. I have no hesitation in recommending this book to any with an interest in this important subject, whether hospital consultant, care worker, family member or dying patient.