More Affecting Moments

February 14, 2011 at 2:12 pm (Nurses Stories)

Below are some recently added anecdotes, memories and accounts of affecting moments in nursing. To see accounts form 2010 click here

There are 2 key moments that have affected me in my training so far, unfortunately both relate to the end of life but I hope that you may find them useful:

1. A lovely lady had been dizzy on holiday, went to the doctors on her return and found that she had a slow growing lung cancer that had spread to her brain. With a six-week prognosis she came into hospital. Nursing her was a complete honour, she and her husband were wonderful people. I shall never forget singing ‘Hi Ho Silver lining’ with her as we helped her with daily activities and since then am always reminded of her if I hear it. She taught me that the professional boundaries of nursing are not clear-cut and that emotional nursing is just as important as clinical nursing.

2. A Hindu man in intensive care. I did not know him awake so my connection to him was mainly based on how he appeared. As we washed him, the nurse accidently smudged the religious bindi on his forehead – I was shocked by her carelessness as the man’s son was making phonecalls to his siblings to warn that he was close to dying. As we continued to wash him, the cardiac monitor beeped and his heart had failed. The ‘do not resuscitate’ form hadn’t been finalised. The registrar ran to us at the sound of the alarm call and shouted from behind the curtain not to begin compressions. The nurse said to leave him in peace. And he died on his own behind the curtain. This was my first experience of death. I hope that if I am ever in this situation again I will have more confidence in my own sense of what is appropriate. I wish that I had held his hand rather than leaving him alone.

I am a cancer nurse specialist, I have worked in my speciality for over ten years now and throughout this time I have had countless experiences ranging from the most intimate moments of shared silence, to witnessing some of the most challenging moments of human suffering and endurance. I have watched women’s lives unfold as they feel under eminent threat of death, I have supported them though often mutilating and radical procedures and I have been amazed and in awe of their ability to day by day week by week find themselves again, grow and develop into people they never thought they could be and find a peace in life that many never touched by cancer struggle to achieve. Sharing in such moments has given me a precious and privileged insight into our most fundamental humanity and an insight into how important death is to life.

Given my experiences over the past years I have been shocked and surprised to be overwhelmed by the experiences of a few women in my care, whose stories and experiences are not new to me, but for some reason these women in the past months who have had to face their fast approaching death have caught me. I must admit that I feel harpooned, caught wriggling on a line charged with emotion and I am not quite sure why. Hopefully by writing this down it will become clearer.  I have experienced many moments of sadness, pain and upset throughout my career along with the much needed and sustaining moments of joy and relief and peace that many women experience. At the moment I feel as if I have been caught with my guard down and the tsunami has caught me.  I feel a great deep, dragging and clawing sadness, which has crept in to every aspect of my role at work and my ability to be the ordinary woman at home, who is not a nurse. I find my mind racing and feel panic and then find myself faced with a sadness so great and wide stretched out before me. I’m not depressed, I don’t have some diagnosable condition, I still have joy and pleasure in my life and I know this feeling, this deep sense of mourning will lift eventually and I will be left with a greater insight into myself and my relationship with my patients. Perhaps I had just become too disconnected to my patients before. In learning to manage my emotions was I somehow less compassionate?

What we are often not taught during our nursing training is our propensity towards martyrdom, our deep need to be doing the ‘right thing’ all of the time, to care more than any other profession, our neediness for approval and appreciation from our patients and their loved ones. Ask a nurse if this is true, especially one recently qualified, they will often be horrified and explain that they just want to care. Is our most limiting factor as a profession this deep sense of righteousness, our evangelical view of what it means to care and our great difficulty at knowing how to balance giving our all to patients with maintaining sanity. Don’t get me wrong I think many of these qualities are also what make nursing so valuable to society, but without support to understand our greatest deepest emotions we may limit our capacity to improve how we care.

Perhaps I should explain about one of these women who have been caring for recently. I will call her Lucy she was a women with an adult daughter, I first met her in clinic, she had a friend with her, she came to find out about the ‘lump’ she had in her abdomen. I knew from our earlier team review of her case that she was a high suspicion for advanced cancer and that her referring hospital had confirmed that she had been told of this. Before I could introduce myself her friend explained that ‘Lucy doesn’t want to know anything bad’, I asked Lucy for her permission to speak to her friend alone as had been suggested. We stepped out the room the friend explained that Lucy could not cope with bad news, that we should not use the word cancer or talk about dying. Such requests are still surprisingly common in cancer care, friends and relatives desperate to spare their loved ones pain from the worry and fear of dying. I explained that we do not wish to cause undue distress or upset, but that I would need to ask Lucy how much she wished to know, I explained that the fear of the unknown and not being able to know how well founded fears were can be worse. I re-assured the friend explaining that we want to support her and Lucy and that we will respect Lucy’s wishes, we will let Lucy guide the conversation at her pace and that we will not force information on her which she does not want.

I reintroduced myself to Lucy and I explained that her friend was worried that we may discuss things that would upset her. I somehow knew in that instant, not sure how, but knew then that Lucy was different in some way from most of my other patients, her needs were for a simple and straightforward explanation, there was nothing in the notes to suggest any intellectual disability, but the fear in her eyes the reaction to this sentence somehow revealed her difference. This was true, as all those who cared for her were aware of something, but that something was so difficult to describe, a childlike innocence, intelligence, but difficulty with comprehension, something more than the usual difficulties that we are all capable of showing when given a cancer diagnosis. She explained that she was scared of dying, she pleaded with me not to tell her she was dying and began sobbing. I held her hand and waited. Her sobbing continued and eventually she looked up at me, big round terrified eyes and said I don’t want to die. I asked her if someone had suggested she might die, she began speaking at pace, words tripping out of so fast I found myself concentrating to keep up. She said that the doctors at her local hospital had explained that she had advanced cancer and that this was very advanced and she would need to be treated at our hospital, she was scared to sleep in case she died in her sleep. This was my way in, my way to help her start to unpick what had been happening, to re-assure her that she was not dying immediately, that she could sleep without fear. We slowly and gently went through what the doctor might say when she came in and I then prepared the doctor, so they knew the pace of the discussion. I was honest, but did not overwhelm her with information, gently explaining that we needed a biopsy, that we thought it was likely to show a cancer, but that we had treatments available.

I telephoned her to follow up on our conversation and had to repeat much of what was said, each time we spoke I could hear the fear leaping out the phone, I had to pause and breathe, she needed strength, consistency and compassion, simple information when it was required, but mainly re-assurance that she wasn’t going to die this week. I was bleeped when she came for her biopsy as she was hysterical, she was refusing to stay with her friend overnight, so the inventionalist didn’t want to continue. We talked and talked and she relaxed and she had her biopsy. She started her chemotherapy, many complex social issues emerged, I worked with her chemo nurse, I referred her for community support and then spent weeks helping her understand that it was alright to phone us when she needed help or re-assurance. She started to phone, it felt like a milestone, she started to accept the community palliative care nurses support, I felt relief, someone to see over her in the community. She stopped asking about dying and seemed to be finding some pleasure in life again.

But then I noticed she was became thinner, whereas many women find they put on weight with chemotherapy due to the steroids, some do lose their appetite, but I had a gnawing sense of something else.  I felt my heart sink, she had only had a few doses but I somehow knew this wasn’t going to work. She struggled with some of the symptoms, her regime was adjusted, her imaging showed a partial response to treatment. The chemo nurse called me, explained that Lucy had new pain, the junior doctor had reviewed her. I went to the unit to see her, I knew then that she was dying more quickly than we had hoped. Her abdomen was more distended, but nothing that was obvious to anyone else, there was something about her pallor, Lucy started to ask again if she was dying. I knew I had to start preparing her, I had no definitive clinical information, but I knew in my heart it would be much sooner than we expected. We started gently talking about how we assess if treatments are working and that they don’t always work as well as we hoped. I discussed my concerns with her consultant, Lucy wanted to go and live with a relative, due to some difficult social housing and family relationships, organising this would be challenging, but I knew it had to be done quickly. She was still hoping that the chemo would hold the cancer at bay.

The chemo nurses called me again when Lucy was having her next dose of chemotherapy, her abdomen was distended and she was short of breath. Lucy’s neighbour and relatives called me, she was telling them she had two weeks to live. I was at a different hospital site, but I arranged with her doctors to have her admitted urgently and spoke to Lucy on the phone. The next day I went to visit her on the ward, she had been found to have two VTE, blood clots in her lung and leg. I explained what this meant, am I going to die she asked. I explained that it looked like the treatment wasn’t working as well as hoped, that it wasn’t shrinking all the cancer down. She cried, she told me about her biggest worries and fears about her relationships with her loved ones, she had told me much of this before, but somehow I felt she wanted to put it all together and tell me it all at once. The phlebotomist knocked on Lucy’s door on the ward just as Lucy was mid-flow, I asked if she could come another time, but Lucy was her last patient of the day, Lucy waved her in so she could keep on with her story. She started talking about dying again, I observed the phlebotomist discomfort with this, but Lucy continued not noticing the needle being pressed into her arm, she began to cry – the phlebotomist jumped to find a tissue for her tears.  I was aware that this phlebotomist was struggling with our conversation, that it had not paused for breath as she entered the room. I observed this but knew I could not interrupt, this was Lucy’s time and she knew it was going to be the last time she saw me in person, I knew it would be my last time – we both knew. We talked about how she had told her family she would die in two weeks, I explained that we didn’t know how quickly it would happen, it could be that she started to get tired over the next two weeks and may go quicker or she may go on for several more weeks than this. I explained that I would not see her before her discharge home, but explained that I had organised everything, as we wanted to get her home to her relative, where she wanted to be as quickly as possible. She asked if she would ever see me again, I explained that her consultant had made an appointment to see her in four weeks time as she wanted to see how she was doing. I explained that it was a long way to come, and whilst we would love to see her such a long journey would become difficult, so we would understand if she cancelled it. I said that I might not be able to see her person again, as I was now on study leave, but that I would telephone her to see how she was getting on at her new home. She hugged me and cried, we held each other in a timeless moment, I felt a connection with her, that I could feel her pain, that she was scared of the coming weeks, I had developed this connection over months, but right then it was somehow brought into full focus. Perhaps I was being presumptuous, how could I feel the emotional pain of someone else, I can’t explain it but it was a connection a bridge a shared moment that is impossible to describe in words. This is my own personal interpretation of course, but I somehow, in they way nurses grow to ‘just know’ things about their patients welfare, I just know in that in that moment she knew I got it.

I called her once I got back from leave the next week, she couldn’t speak freely as her relative and friends were round visiting in the same room. She said she felt well, but that the journey to this new house from hospital had been terrible. Lucy asked if she had to come back to us for another appointment, I said it was entirely her choice and we would not expect it of her, if she wanted to come she could. I encouraged her that there was no need for her to put herself through such distress again. She sounded brighter than she had on the ward, but she was also somewhere else, not quite present during the conversation. I felt relief, I had been worrying about Lucy’s social circumstances and how much support her relatives would provide, but she seemed to be happy. Two days later her relative called to explain that she has died, a message was also left by her community palliative care team, two weeks after her discharge home to the day. I called her relative and offered my condolences. She was at peace she had died comfortably without fear or pain in her sleep.

So, this is were it started, this began as a knot wriggling inside which exploded into overwhelming grief, I don’t know if it was Lucy’s last months or if it was because I have had several women who have had especially challenging emotional needs around the same time that started this sadness off. Have my subsequent patient relationships been influenced, most likely, but part of me also feels that there are some patients were the feelings of grief are more overwhelming than others. Interestingly I don’t feel that I care for my other patients less, its more complicated than that its just whether I am especially tired or I perhaps allow myself a moment too long in their shoes, something happens with certain patients that can floor you. Something happened which I believe was very important to Lucy, there was something in our relationship, an emotional bond which I could see helped her to cope, helped her to find peace. Now this is where I worry that there is always room for self-delusion with such thoughts. Despite the sadness I feel about her loss I have a bigger feeling that she died in a way that may not have been possible if we had not made such an emotional connection. So here we are, back to the potential for martyrdom, how can I have such emotionally intense relationships with patients and not sacrifice part of my own welfare eventually, and therefore my ability to care for others?

Perhaps this is just symptomatic of our wider society, which separates and divides out roles and responsibilities. Those who care for a living, those who make money for people, those who fix things, our need within nursing to maintain professional boundaries despite our most precious assets, our humanity and compassion, not always allowing themselves to be tightly contained. Ironically, in attempting to maintain professional boundaries to prevent ‘uncontrolled emotions’ from doing us and our patients harm, could we be preventing ourselves from making some of the most powerful and therapeutic relationships on a one-to-one level. I know that within the NHS and as a registered nurse I must be aware of what is achievable within this complex healthcare system, but I do wonder if we could manage our emotional work differently somehow. I wonder if it is this that makes nurses burn-out, the inability to do what we know needs to be done for some patients, we do not have the time or the resources if we are to care properly for our case load. It also takes years of practice and experience to read patients most subtle emotional needs and to appreciate your own under-development in understanding yourself and others. I thought I understood how to connect and support patients before, I have been on many courses and supported hundreds of patients and have felt useful to them, but as with many things in life, I am only more sure in what I didn’t know then now.  Is this the heart of nursing, is this spirituality in nursing something tangible that can influence our practice, is this why some experienced cancer nurses so frequently bow out of direct patient care eventually, as they cannot withstand the emotional impact without organisational support?

Many years ago as a young, very new staff nurse, I was working in a district general hospital on the South coast. Having trained at a very high-powered specialist hospital I was amazed at the difference in standards and knowledge there was between the two and often frustrated by it. One night I spent the night with a baby who was very ill with a chest infection and was deteriorating. I spent most of the night trying to get someone to see him and making decisions on my own to help the baby – putting him in an incubator, giving humidified Oxygen and suction as required, and putting a nasogastric tube down and putting him on 2 hourly feeds. I had the radio on Classic as it seemed to help the baby to settle and because I love classical music, and at about 04.30 I looked out of the window to see the sun coming up over
fields and hedges. There was a heavy mist so everything seemed to emerge slowly through a pink and orange tinged glow – amazingly beautiful and at the same time the radio started to play the intermezzo from Cavalier Rusticana. The whole world seemed to hold its breath and relax in a sublime calm moment. As I turned to look at the baby, with tears streaming down my face, I saw that he was breathing almost normally and with much less effort for the first time that night. It was a moment that has stayed with me for 26 years not least because I then got into enormous trouble for doing things without a doctors instructions!

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