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.