Theme clusters:
• Witnessing unrelieved patient suffering • Moral distress
• Hopelessness
Witnessing unrelieved patient’s suffering
The participants were disheartened when they had to turn their patients away (send them home) due to institutional dialysis restrictions. The participants’ feelings of an inward guilt of ‘shame and blame’ provoked significant emotions of being angry when their patients were discontinued from dialysis treatment.
Nicki explains:
‘Being a nurse doesn’t just mean being in a white uniform. I’m so ashamed to be called a nurse with health knowledge, but I can’t help my patient.’
Beauty shares her story:
‘As the unit manager, I get agitated with my staff when they ask me to do a favour and dialyze a patient with no funds or when patients who turn up to the dialysis center yet knowing that they are not eligible for dialysis.’
55
Queen expresses herself with an angry tone:
‘How do you tell patients that you can’t dialyze them, when you see them suffering?’... [Angry voice].
The interesting concept of emotional trauma was the fear, anger and self-blame, following the death of the patients after dialysis withdrawal. This corresponds with Kübler-Ross’ explanation that when an important person dies ‘grief, shame and guilty are not very far removed from feelings of anger and rage’ (Kübler-Ross, 2009, p. 4). The participants expressed themselves with sentiments, associating them with the death of their patients in the following statements:
‘To tell patients that they can’t be dialyzed, is like throwing cold water on the person’s face. It is like a death sentence.’… Honey
‘I kept thinking about him, but I did not want to face him again…. I failed to save his life as a friend and a caregiver.’… Zola
‘It feels like it is the nurses who are failing the patients.’… Nicki
Moral distress
The participants expressed their worry about the deaths of their patients, seeing that it could somehow be preventable.
‘To say that you can’t dialyze your patient while you have a machine and all the equipment, it is really a distress that I don’t know how to explain it, there is no way to express that distress ... James
‘You can’t really do anything to save the life of your patient until the Doctor or Company decides for you what to do’ … Zola
‘Being bound to policy and guidelines makes you sometimes feel that you are dehumanizing patients. How can you not help a patient who was on dialysis for so many years, and now watch him get worse and worse?’… Beauty
56 The inability to deliver patientcare caused the participants to experience a sense of moral and emotional distress which was made worse when they watched their patients condition deteriorate, culminating in death.
Nicki stated, ‘No dialysis, no life for patient with ESKD, seeing the health deteriorating, you can see that the person is dying so I just started seeing death on him.’
‘After dialysis withdrawal, the whole process is sad and painful. Watching your patient’s condition deteriorating while you can’t do anything is excruciating to experience.’[pause], [broke into tears] … Queen
Hopelessness
Hopelessness is a feeling or state of despair or lack of hope (Miller, 2010). In this context, the participants exemplified their emotions of hopelessness when their patients were withdrawn from dialysis.
‘I don’t see any hope of the health system getting better. Our patients will always fall in the same pit. Unless the government changes the admission criteria, dialysis is expensive.’…
Beauty
‘No hope of getting this system right, a patient with no dialysis access should be top priority for kidney transplantation, no matter what.’… Jane
‘After her husband left, there was no hope to get her back on dialysis, all I could think of, was how I have failed.’… Queen
The ‘hopelessness’ concept created anxiety in the participants which led them to experience the emotional trauma after their patient’s death.
‘The access was getting worse every day and we could see where we were heading, the death was clear, there was no hope to recover.’… Honey
‘It was obvious that after dialysis withdrawal, I could only think of the death. I could not give any hope of recovery to the family who were around their patient.’... Milani
‘You are hopeless because you know your patient is going to die and you have no means to continue dialysis.’… James
57 The theme clusters of witnessing patient’s unrelieved suffering, moral distress and hopelessness induced a tearful response from Queen. When asked a question of what she disliked while caring for the patient with ESKD dying after dialysis withdrawal, Queen reflected on the process of death and mentioned symptoms of death i.e. the swelling and shortness of breath and the hopelessness of being unable to relieve that suffering. While talking about that experience, she had an outburst of tears. The phenomenology conversation was suspended to allow her to recuperate.
Queen’s narratives capture her emotional trauma which still lives inside her memory.
Personal Journal Entry 24/08/2017
The third phenomenological conversation was with Queen. My feelings after engaging with her, made me very apprehensive to continue further. In a way, I was also experiencing my own emotional trauma as I had had similar experiences with patients who were dying after dialysis withdrawal.
I felt anxious about my next phenomenological conversation and had even considered changing the topic of my study. The reality of being a novice researcher highlighted my lack of preparation for this type of research methodology. I felt the need to have a more personal conversation with my supervisor, rather than that of a student progress follow up.
My supervisor emphasized the importance of my personal and emotional investment that is required for a phenomenological study. Following our ‘collegial’ sharing of both our phenomenological journeys, I felt motivated to continue.