Book review by Mary Jordan, author of ‘The Essential Carer’s Guide’ and ‘The Essential Carer’s Guide to Dementia’, of ‘When the Time Comes: Stories from the end of life‘ by Dr Magnolia Cardona and Nurse Ebony Lewis.
This is a very thought-provoking book. It is a collection of short stories about actual experiences of dying and end of life care. Because each story is told by a different individual we hear from many viewpoints and cultures but the emotion which comes most often to mind is the general feeling of dissatisfaction experienced with standard medical attention at end of life.
Mostly the people relating these accounts to do not blame those medical professionals concerned at the end of these lives. But they do wish generally that things could be managed better. One of the problems in our civilisation is that hospitals and doctors are not seen as helping to make death a more comfortable experience. Doctors and hospitals are concerned with curing illness and bringing people back to health and this means that many of us at end of life get carried along by the medical path that is concerned with ‘trying one more treatment’ or tackling one more crisis. For example, we are told about a patient who is ‘ready to go’ but who continues to ‘endure the efforts of a health system determined to do all they can to keep him here’.
What we seldom have at this stage is the time to take a step back and consider the options.
Ideally this thinking would be done before the crisis arises and indeed this book advocates thinking ahead and giving time to planning our own end of life as well as helping our loved ones to do the same. Each account in the book ends with a few questions which can form the basis of considering end of life, looking at many different practical and ethical points.
I would perhaps like to have seen a little more room given in the stories to people who are not yet ‘ready to go’ and who do want every effort to be made to keep them in this life but over all that is not what the book is meant to be about. The points about having a good quality end of life experience and about communicating your wishes in this respect to those around us are very well made.
This is a book well worth reading and using as a discussion focus with those you love best.
Blog post written by Dr Magnolia Cardona and Nurse Ebony Lewis, authors of When the Time Comes: Stories from the end of life. Launches 25th March.
Receiving a diagnosis of an irreversible progressive disease can be confronting and intimidating. On the other hand it gives us opportunities to prepare for the end of life in a way that can be a fulfilling activity that helps us tie the loose ends – not a morbid duty we should avoid. We have witnessed people of advanced age with chronic disease and their families facing the dilemma of deciding between life support and resuscitation in their last days of life without sufficient preparation for it. Wouldn’t it be better to have had time for that conversation with significant others much earlier, at home over a cup of tea rather than in the emergency room?
The following is a list of lessons learnt from clinicians and patients, from years of research and clinical experience:
- Older people today are more willing and able to discuss preference for place of death and to participate in treatment decisions than they used to be a couple of decades ago
- Cancer is not the only life-threatening illness of old age: chronic lung disease, kidney failure, heart failure and dementia are other examples less recognised by the public
- Talking about treatment wishes and personal values with our families and doctors should happen as early as possible, not only after receiving a diagnosis of chronic irreversible or life-threatening illness
- Just as we prepare celebrations for life events we should be in control of our preparation for death if we can help it
- Living life to the fullest can be followed by a good death if we prepare by talking to others about our wishes and objections towards the end
- An advance health directive is not a death-sentence but a passport, with clear instructions on our wishes, which can be renewed periodically so others don’t have to guess our treatment preferences before our final trip
- Families’ requests for use of medical technology, such as intensive care, should be made only if it prevents suffering and provides benefit, not just to prolong life
- A palliative care referral is an early admission to a pathway that prevents unnecessary pain and physical suffering; we should take it if it is offered
- Hospices are not places where patients are abandoned, but places where loving specialists help dying people experience a dignifying transition
- By normalising the end-of-life discussion we will be helping doctors make decisions aligned with our wishes and be removing the burden from our families having to choose for us.
In our book When the Time Comes, we have compiled short stories from real-life to illustrate when the discussion of values and preferences has prevented suffering or guilt, and when the absence of an end-of-life conversation has led to excessive and futile treatment. We invite readers to reflect on the different scenarios and to be ready, no matter their age or state of health. Useful lessons can be learned from the circumstances and motivation of people in the stories who have shared their experience to help others prepare.