The A-Z of Loss

The Handbook for Health Care

Elizabeth Bell

• Publisher: CRC Press
• Year: 2019
• Print ISBN: 9781857756531
• eBook ISBN: 9781315345338
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

In a unique approach this book links policy theory and research with the expertise of service providers and users to explore the major debates concerning the provision of mental health services. Many of these dilemmas revolve around questions of who makes the choices and who has control. The book examines the power and demands of the disparate groups involved in the provision and use of services before considering the different practice options and their implicit values and goals. This book will inform critical debate among all those involved in the mental health enterprise and challenge health professionals to consider their own practice. It is timely and relevant reading for practitioners and managers at every level in all disciplines and from all agencies as well as service users and carers.

A is for Anxiety

They took him down at ten o’clock in the morning. I was only allowed to go with him as far as the lift. He’d been in so much pain with his knees and we were both grateful that his name had finally got to the top of the waiting list for knee replacement surgery. The orthopaedic surgeon had not bothered with me when we went to see him. My husband and he just joked about what playing rugby in your youth can do to your joints.

I was told to go home and wait and that he would be back from the operating theatre and fully conscious by the early afternoon. I could not concentrate on anything. I did not dare go into the garden because I was scared I would miss the phone call from the hospital and also because Bill had been working so hard out there, it would only remind me of him. I kept picturing him unconscious, powerless and defenceless. I’d only ever seen surgery on television. I remembered seeing the surgeon wielding a saw over the patient’s leg. I’d also been on the internet and found out how dangerous just having an anaesthetic is. I thought about Bill not admitting to the hospital that he had had a bit of a chest infection the previous week.

I wandered around the house. There were so many photographs of our family together. I had not been able to get hold of our daughter, to tell her about dad’s operation. She was up the Amazon, as far as we knew. We had lost our only son when he was just a baby. Nobody at the hospital had been able to tell us exactly what happened. He had just been taken in with fits and then died, alone, in the night on the children’s ward.

When I had not heard from the hospital by three o’clock, I had to ring them. They sounded positive but said that he had not yet come back from theatre. I wanted to know why but they sounded really busy. I decided to drive over. I did not have the right change for the Pay and Display car park. By the time I got to the ward, I was beginning to panic. They said that there had been a ‘slight problem’ and so it was best to get a cup of tea and wait. The last thing I needed was to be sitting in a crowded cafeteria with a cup of bright-orange tea. But I’d not eaten anything since the night before and I was beginning to feel light-headed. After a depressing half-hour surrounded by a mixture of patients, outpatients, relatives and the occasional doctor (and they did all look about 16 years old), I went back to the ward. There was still no information. I could not take any more uncertainty. I needed some facts, even if they were facts that nobody wants to hear. The nurse who seemed to be in charge, well, she had Staff Nurse written on her badge and so I guessed that she was in charge of the rest of the staff, was very pleasant but she could not tell me what was happening. I asked if I could go down to the operating theatre and find out for myself. She suggested that I could sit in her office. I was relieved to be in a private area because I was near to tears. It was such a shock when a nurse in a different uniform came in and sat down beside me and just quietly handed me a box of tissues. It turned out that she was not a fully trained nurse at all but she understood just how terrible the uncertainty was. The next half-hour seemed to pass really quickly and suddenly I was called out of the office and Bill was returning on the trolley.

Several weeks later, we found out that the surgeon had used the wrong ‘cement’ on his new joint and had had to break and re-set the leg. That was why he had been so long in the operating theatre. Neighbours said that we should have complained formally to the hospital. But we were just so grateful to have come through safely. I say ‘we’ but really it is Bill that has come through. I have had to have a course of sleeping tablets from my GP. I admitted that I had always had problems with my nerves and she did offer me counselling but there was a waiting list. I don’t know why, but every night I have nightmares about being unable to find my family down the long winding corridors of a hospital, which is only partially constructed, somewhere in South America.’

Worry is the dark room where negatives are developed.

Psychological issues

The first thing that we notice is the use of ‘us’ and ‘them’ language. She also uses the term ‘allowed’ as if she is a child.

Then we get the impression of gratitude for rising up the waiting list, followed by uneasiness in the presence of the surgeon who did not include the wife in the discussion.

Now we read that she is ‘sent home’ and, with insufficient distractions or support, her mind wanders towards the negative end of the spectrum. We also witness the power of television and the internet in ‘informing’ this woman about what may be happening to her husband.

Having tried being outside, leaving the constrictions, physically and psychologically, of the four walls, she returns to the house. But now photographs attract her attention and she experiences feelings of isolation relating to her inaccessible daughter and memories of the mysterious death of her only son in a hospital many years ago.

Trying not to be a bother to the busy-sounding staff, she sets off for the hospital in person only to experience the unnecessary hassle of parking fees. From now on, we can observe that her perceptions are increasingly negative until she is offered a private place and, by chance, a sympathetic and supportive member of staff.

The label ‘Staff Nurse’ is misleading. It gives her the impression that the nurse is probably in a managerial role over other staff, and so raises her expectations – which are then disappointed.

The use of the telephone for exchanging clinical information is limited. There is no ‘body language’ available to convey the wider aspects of the message. Voice is the only thing that can be manipulated. She perceives this to be ‘busy-sounding’.

Finding out why things had been so uncertain weeks after the event, they decide not to take any action, even though she is suffering the aftermath of the strain and having to purchase prescription drugs.

Personal and professional development

1. How would you limit the effects of ‘us’ and ‘them’ thinking in healthcare?
2. Imagine you were the nurse-in-charge of that ward. What would you have done differently?
3. Reflect on your experience of hospital care, either as a patient or as a close friend or relative.
4. She finds the necessary emotional support late in the day, by chance and from somebody who is not fully trained. She and her husband are still grateful, weeks later, for surviving the experience. What does this say about expectations and the rhetoric about ‘patients as partners’?
5. Reflect on the sexism and ageism … and suggest ways of mitigating the effects of these in a clinical setting.
6. Reflect on the effect of the internet as a source of medical information (quality and quantity) disempowering the medical profession.
7. What are the training implications for surgeons in this example?
8. Examine the literature for the research on stress, specifically, the idea of ‘daily hassles’, and link this with the necessity or otherwise of car-parking fees at hospitals.
9. Think of other situations where uncertainty is the key factor, for example waiting for the news of a fire disaster, air crash, earthquake or terrorist attack. What do relatives and friends need at this time?
10. Critically evaluate the offer of counselling (in general and in this example), particularly when there is a waiting list.
    

    Anxiety

Useful tip

Smile when answering the telephone … you will sound warmer and more helpful.

B is for Baby

‘I’d been desperate to conceive another child. We had a son and we wanted a sibling for him and we were also down for adoption. I come from a big family and my husband’s very easy-going, so I’d always pictured a big noisy chaotic family with my husband calm and in control. After six years of trying, we conceived. I was convinced it would be another boy. They recommended amniocentesis because I was 40 years old by then, but we would never have aborted a child. The pregnancy went well and I had my date for a Caesarean (Tom had had to be delivered by section and they didn’t want to take any risks) but a week before, my waters broke at 0730. Neighbours took Tom to school and Paul drove me to the hospital. The labour pains were excruciating but wonderful because I was giving birth to new life. But they still decided to give me a ‘spinal’ and the next minute my legs collapsed and off we went to theatre. Fully conscious, all I could feel was a tugging sensation in my abdomen. Then suddenly I was handed a beautiful little girl. In the recovery room, she was put to my breast and although she snuffled a bit, she drank a little milk. She was taken for her Apgar score, got 9, and Paul left me to go and get Tom from school. All four of us sat on the bed together, a perfect little family. I was crying and laughing at the same time. Paul took Tom to get a snack from the hospital cafeteria and I just stared at the miracle, the little scrap of baby at my side. Suddenly the door flew open and a woman said “Your baby looks a bit blue. Was your first child floppy like this at birth? We’re taking her to Special Care”. And with that, she picked up my baby and left the room. What was going on? Who was she?

That was how we learnt that we had a baby with Down’s syndrome. The woman had been a midwife. Paul returned with Tom. Both looked pale. The next minute we were told that Leila had heart problems and would need surgery, and that we would have to go by ambulance to the city hospital. But that turned out to be ‘not yet’. It was just chaos. I was so angry that I ran down to Special Care. The nurses were fantastic. They hugged me and held my hand. I wanted to feed Leila but she was on special monitoring for fluids because of her heart. One of the nurses said she’d let me feed her if we hid behind a curtain. Having my baby to my breast and feeding her was what we both needed, but then we heard the doctor coming and had to stop quickly. I could not believe what was happening. One minute we were the perfect family and the next we were fighting for our baby’s life. On the third day, I cracked. I could not stop crying. Paul was taking it very differently. He looked like he had been punched in the stomach. A different midwife sat with me and I cried and cried until there were no more tears left. The doctor who had done the Apgar test came in. He apologised for not noticing that Leila had Down’s syndrome. He was very young, looked newly qualified and could not have been more sensitive.

Two months later we went with Leila in her incubator in an ambulance to the city for heart surgery. I felt every bump in the road. The heart surgeon was a woman, which made me feel better somehow, even if she did talk about my baby as a ‘case’ to be ‘monitored’. By this time, Paul and I had disregarded the Down’s syndrome. We just wanted her to live. She did, covered in tubes and wires.

It’s now two years on. We didn’t bother to adopt, even though we were accepted. I’m learning sign language. Tom loves his little sister. Paul and I are closer than ever, even though we did grieve so very differently. How can I protect my daughter from people taking advantage of her? What about when we die? We went to a solicitor to make a will and to give custody of Leila to Tom when he is 18 years old. The solicitor started to write that my daughter ‘suffers’ from Down’s syndrome. I would not let him say that. What do we know about her suffering or otherwise? I’ve learnt a lot in the last few years. Down’s children aren’t happy all the time either!’

Psychological issues

The key issue here is how not to give bad news. Not only is the mother on her own when she is panicked that there is something wrong, but the person giving the news does not introduce herself or her clinical role. The word ‘floppy’ is also alarming because the link between ‘floppiness’ and Down’s syndrome would probably be made very ...

Table of contents

• Cover
• Title Page
• Copyright Page
• Dedication Page
• Table of Contents
• Foreword
• About the author
• Acknowledgements
• Introduction
• A–Z of scenarios:
• Appendix I
• Appendix II
• Appendix III
• Further reading
• Index