By: Joe Couling,
on 6/19/2015
With a failing NHS and an ageing population in Britain, palliative care is a topic currently at the forefront of healthcare debate. Whether to abandon treatment in favour of palliation, is a challenging decision with profound implications for end-of-life care.
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By: Meredith Sneddon,
on 9/19/2014
Uncertainty is everywhere. There can hardly be a person alive who has not experienced it at some time. Indeed, as Shakespeare indicates in his play The Tempest (Act I) we are all submitted to “life’s uncertain voyage.” We may well find ourselves asking “What shall I do?” or “How should I react?”, familiar questions as we continue our voyage.
This common factor in human experience is heightened when the circumstances involve serious illness, whether for the patient or for those who care for them. Living with uncertainty affects all at the bedside. The patient longs for normality and yearns for safety. The family has to face unexpected disruption bringing new routines, responsibilities, and many new people into their lives. A whole new world seems to open up. A client once said, “It is like having a new job” referring to all the new things she had learnt following her husband’s terminal diagnosis.
The professional or volunteer carer, too, has to adjust to uncertainty. The progression of the disease is endlessly variable. There are no certainties in medicine, only likelihoods. This may place the carer under pressure to say something that will give patients and their families a sense of having a handle on their life, regardless of the seriousness of the condition. There are also the practical issues, often difficult and complex, about, for instance, discharge arrangements and future support. Working alongside the families, the carer must hold an appropriate balance between hope for the future alongside a realism about what is or could be involved.
Challenges and choices in life-threatening illnesses create a spectrum of strong feelings among those experiencing them. The patient may well ask “Will I ever be well again? What are they going to do to me? Can I cope with the noise and bustle of a hospital ward? Why has this happened to me?” Fear, anger, grief and helplessness are all present in some degree. Even time itself seems to drag amidst the pain and weakness, loss of ability and responsibility. The notion of self-worth can be seriously challenged. The present and the future may look bleak and insecure as compared with “normal” life. Many of the same feelings will be felt also by families, including anxiety about whether they will be able to cope with the new circumstances and the inevitable increase in financial costs.
The radical changes in circumstances can promote the reasonable question “Why me or us?” Disease is often understood to be a form of judgement, and where the patient has done their best, and in their own view, lived a “good life,” the question arises out of what is felt to be an unjust judgement and cruel sentence. People can feel rewarded, unjustly, by the disease, even if in some ways they have unconsciously contributed to its onset by excessive working, smoking, or drinking. The disease can also arise out of the environment in which the patient lives, or their genetic make-up, over which they have no control. The illness therefore becomes an unfair threat and obstruction in the mind of those involved whether as a patient or family member.
Major disease can not only radically change a person’s circumstances, but also their judgement, attitude, and mood. They can be changed as people. Medical experience can be overwhelming, distorting judgements and decisions, undermining relationships, and creating a deep sense of vulnerability. “Why me?” becomes a cry from the heart; a cry for help; a cry out of hopelessness. But it need not be.
We are all vulnerable. There is a fault in creation, just as there is wonder and genius. Both facets can be seen within scientific fact as well as religious and moral recognition. Disease can be judged as part of nature just as death is part of life. Such reality challenges the patient just as it does the doctor and researcher.
Such natural faults need to be accepted and worked with. They confront but they also inspire. Our uncertain voyage can involve major illness and its concomitants. A constructive but very difficult response can be to accept, remain positive and be grateful to those who are helping by their skills, support, and encouragement. Disease and disorder are part of the underbelly of creation of which we are all a part. “Why me?” can be changed to “Why not me?” The change in the question can bring about change in outlook and peace.
As Shakespeare reminds us of “life’s uncertain voyage”, we wrestle with uncertainty. Often, we hope, we may find resources which help us along the road. Close supportive relationships, a commitment to an ideal or an allegiance to a faith which inspires, even those quiet times of reflection and self-realization can prove invaluable. They all have a part to play in helping us to cope with the unknown. Self-confidence or lack of it can be instrumental in how we manage uncertainty, but neither can assure us that our thoughts and actions are right. Subsequent experience is often the only measure of that.
We can learn from experience — we can learn to live life fully, whatever the circumstances, even when we are uncertain as to what they may be or lead to. We will never know everything, and perhaps it requires a sense of peace to live with such uncertainty — a tough challenge, but one with a great reward.
Heading Image: Snowstorm by William Turner. Public Domain via Wikimedia Commons.
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Short Stories of Heaven is a wonderful resource for children and their families who are dealing with loss and terminal illness, as well as people who are looking for a way to explain the afterlife to children.
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The Girl Next Door by Selene Castrovilla. WestSide Books, 2010. ISBN 9781934813157 . 240pp $16.95 ages 14+
Have you read this book yet? Be warned. It is both romantic and sad. It grabbed me emotionally and I ended up holding someone’s hand while I read. I was hooked so thoroughly that I was afraid my emotions would get out of control and I’d start weeping while we rode in the car. 
If you have students requesting sad books, romantic books, and realistic titles, add The Girl Next Door to your YA list.
Author Selene Castrovilla does a tremendous job of sharing the difficulties of undergoing cancer treatment as well as the emotional needs care-givers experience, too. Her characters are realistic and direct. It is easy for the reader to connect. Fans of Lurene McDaniel and teens will devour this title. This is an author to watch.
Publisher’s Description: While most seniors at her high school are worrying about prom and final exams, seventeen-year-old Sam is desperately trying to save her best friend Jesse’s life. He has a rare, treatment-resistant form of cancer, and his odds of survival aren’t good; he may have only ten months left to live. Through every bit of his pain and anguish, Sam has been by his side—through the grueling, aggressive treatments and their awful aftermath, to sleeping in his room when he’s afraid to be alone. Best friends and neighbors since preschool, Jesse and Sam’s friendship is changing. Now they’re falling in love, and the bond between them grows stronger even as Jesse weakens. Will they have a happy ending…or will their story end in heartbreak?
Sam has loved Jesse for a long time even as he dated popular beautiful girls. When Jesse is diagnosed with terminal cancer and withdraws from his friends, Sam’s devotion to Jesse enables her to stay by his side through the darkest of moments. She sleeps on a bed in his room while he lies in a hospital bed trying to get comfortable. She sacrifices much of her life and school to be there for him. When Jesse indicates he is also in love with her, Sam must battle her emotions and seek answers: Does he love her only because he has cancer and no one else is there? Should she encourage him to undergo aggressive treatments or let him progress his way? Can she go on with her life without him if need be?
The author keeps us on this emotional roller-coaster as we battle between wanting Sam to protect herself and in understanding her love & devotion. I was relieved when Sam began opening up to her counselor.
Sam’s counselor offers her a technique for reprogramming her subconscious and a pamphlet called “How to Tap.” I wanted to learn more about this because I was so emotionally wrapped up in the reading of The Girl Next Door. I found some links online to EFT Therapy – Tapping Therapy for Emotional Freedom Techniques and Meridian Tapping Techniques.
I’ll be contacting author Selene Castrovilla this week to find out more of the “behind the scenes” to this story. Any questions you want me to share?
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