Field notes - The lived experiences of professional nurses with regards to end-of-life issues i

Interviewer: Sr. I. Clifford

Interview date: 04/05/2012 conducted at interviewee’s home.

Methodology

The participant‟s home was used as the interview venue. The interview was conducted during the day. Adequate lighting and ventilation was ensured through open window and sunlight. No other persons were present during the interview. Cellular communication devices were put on silent in order to limit interruptions. Interviewer and interviewee sat on couches opposite one another. Distant sounds from a construction site could be heard in the background, yet the interviewee‟s responses to questions were clearly audible.

The participant employed an open body posture and appeared comfortable during the interview. The participant responded openly and honestly to questions throughout the interview. The participant did not need much prompting in giving more detail for questions asked.

Personal reflections

The interview was only the second of 9 interviews and the researcher was still becoming accustomed to the process of interviewing. The comfort of the participant proved to be encouraging for the researcher, making the interview process less intimidating for the researcher. Eye contact was maintained, except during times when the participant was thinking about a question or formulating a response.

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The participant was very interested in the research topic. The participant was supportive of the research being done and excited about the outcome of the research. No impeding factors were identified during this interview.

111 Annexure J: Interview 2

R: Researcher P: Participant

Italic script: softer voice

CAPITAL LETTER SCRIPT: louder voice Bold script: emphasis on word

R: Date of the interview is the 8th of May 2012. The place is Port Elizabeth.

Interviewer is Ilze Clifford.

(Participant sitting on a chair opposite interviewer)

R: How long have you been working in ICU?

P: I‟ve been working in ICU for just about six years.

R: And you have during that time experienced nursing with a patient that has either had withdrawal or withholding of treatment taking place?

P: Both of them.

R: Can you tell me about those experiences?

P: Ok, um, we‟ve had recently just, we‟ve had a patient who had such a, what can I say, a terminal illness, that the doctors decided to stop and withhold all further treatment. They went so far as to even withhold oxygen and just put the patient...the patient was still being ventilated...and put her on, like room air, which she obviously could not cope with. And it was so difficult for me to um, enforce what he had prescribed that, it just went against all, every grain in me, because in my opinion, yes she was going to die anyway, but we didn’t make it easy for her. She was gasping, she was tachypnoeic, she was desaturating, she was sweating ,

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she was a nervous wreck in that bed and by the time, now ten ‘o clock in the evening came, I took it upon myself and gave her oxygen and increased her rate on the ventilator and she improved to such an extent that she was comfortable, but I knew that the next morning we would actually, like, get into trouble because we did it and, they reduced everything again, and then I was off. She died. I wouldn‟t have been able to have seen that through on my, if while I was looking after her and just have made her more and more uncomfortable than what she was actually in. I would never have been able...it just goes against everything that we stand for. I mean we say first do no harm...

R: Mmm...

P: How can...I’m doing harm even though I‟m literally, in my religious opinion, I‟m not extending her life. That will be when it is time. But why not make her as comfortable as humanly possible until her time comes.

R: Mmm...

P: But, withdrawal of treatment in another case would have been with a patient who was declared brain dead. And then in the end they, parents decided not to extend the treatment at all, not to donate organs, but switch off the ventilator. Even that was difficult to watch the family say goodbye and then on the other hand we nursed him for, like a week.

R: Mmm...

P: You get attached to family, you get attached to the patient, though they couldn‟t communicate with you. They still in your care for such a long time that you knew everything about the patient. And it was hard. It was very, very hard to, although you knew there was nothing you could do, it was easier than the first example. Yes an awake patient is much more difficult to just say now is your time, your time to leave us...

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P: Yes, very much so. I find it extremely difficult...even...and even if there is no hope. Um, I believe you should actually...you will die when you have to die and nothing that we can do will keep you here on earth if you have to die. So, you know, I know that medically speaking they say that you do prolong life and you know, you making it more difficult for the patient and it‟s difficult for me to perform the tasks of...that I need to do.

R: What type of emotions and feelings do you experience during those times?

P: For me it‟s...I am a very emotional person, so for me it‟s like nursing my family so, that is the way I look at all my patients that I nurse. So for me to withdraw treatment or to end medical treatment is like, um, I’m sad, I’m emotional, I feel for them, I wonder if they religiously ready to go...all of that. It‟s like it‟s my personal family. So it’s hard...(participant appears emotional, tearful)

R: And what do you do to cope with that?

P: Pray...ja, well, while I‟m there doing this, and at home, because I feel if you don‟t, you can‟t be here. (participant holding back tears and speaking quietly). How can you nurse if you don‟t have that. You have to be grounded. And another thing is, um, your family is separate from your work. So...and your kids are young...so I can‟t go home and cry there, because it’s separate. So my time from when I get in the car here and I get home, I cry, that you can see tears. I’m just about drowning in my car. And by the time I get home my next role starts. Now I’m a mother, a carer for them... And I have to push it back in my mind and focus on them. But it seems to, if you have too many of those experiences in a short period, it gets too much for you. Really, it‟s like it shatters you. You know, because end-of-life is end of life. I think it‟s a process that that you go through to get to the next life, but it‟s still the end of someone’s life... So... (participant tearful and quiet)

R: Just taking now from the emotion you have now even as you speak it‟s something that you feel possibly you have not dealt with completely?

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P: Mmm... Many of them...ja and I know that there is help available, like ICAS and what, but, it‟s like...do I really want to talk to a stranger about these things. I think we shall talk to each other in the unit, but also some people think that you weak if you show emotion. And I don’t care. That‟s just who I am and that‟s how I deal with it. I talk a lot about experiences. People that I trust, and I pray about it because that‟s the only way I get it out of my system...because it’s hard...

R: You mentioned that you speak to certain people that you can trust. Do you feel that from those people you get the support you need in the unit?

P: Yes...people that I trust, people that are like on the same emotional and religious level as I am. It‟s easier to talk. And it‟s...it’s a serious thing, you know. Some people can handle it. It‟s nothing, it just rolls off, it‟s just someone else that just died. And you know it‟s easy to joke and to talk as if it doesn‟t touch you, but deep down you do have to deal with every single thing that happens. And sometimes it just becomes a bit much. Especially if they are like one after the other, after the other...then it becomes a bit much to handle.

R: Mmm... Looking at support received from the staff or management or doctors or wherever support comes from, um, do you think there ...is there anything you could suggest that we can maybe do better to help support each other during these types of times?

P: Um, there...in my opinion, um there...management...ICAS is a wonderful idea, but I don’t personally know of anyone who picked up the phone and phoned them and said “listen, I need help.” They just don‟t go that far. And you go that far...you feel weak, as if you cannot handle what your profession...a part of your profession. It‟s part of what we do every day. And um, the best support that I get from management during this was “ag shame”. You know...you are, I am an extremely emotional person. And if I go talk about it... “ag shame” is the best that you get. The most of your peers, some will think you are stupid...some will really listen to you and support you. But I think there‟s a lot to be done. I mean, I...if they can teach people from when they start nursing how to handle situations like that. How...that it‟s okay to cry, that it‟s ok to show your emotion. I’ve learned from watching how other

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people do it and I mean, I haven‟t always agreed with how. And I still struggle to, when the family is grieving, I will stand there and I will put my arm around them. I struggle to find the words to say. Sometimes I find they say nothing and just being there is more important than saying your own nonsense. But it’s not always easy and I don‟t always know how to handle the situation. There are people who are much better at it than I am. And because I’m so emotional I will show them...and I often cry with the family more than anything else, but in my opinion that’s not wrong either. But I think they should teach nurses and people who come into ICU, when they do those orientations, they should go on a course of how... to handle death and dying and not, um, frivolous, little pages. Sit down and talk to these people and teach them the skills, because you need skills...to handle it...you really, really do.

R: You mentioned education for those who are coming into ICU or coming into nursing...do you think that would also be of value to those that have been here for a while?

P: ABSOLUTELY! I think every form of new information coming in to teach you better coping skills will always improve who you are as a nurse. It will better what you can mean to the patient‟s family in the end. And how you walk out of that door at the end of the day. If you learn better skills and have better...it‟s like a sound board...you can just reflect off emotions. It will be much better. I think we really really lack in that department.

R: Um, when it comes to decisions being made about patients where withdrawal or withholding of treatment needs to occur...do you feel that the doctors make those decisions easily, or do they take too long...what do you feel? What are your experiences?

P: Um, some of the patients...they take too long. When the patient is admitted and they see there is nothing going on...it is time to make a decision. But they will drag it out and drag it out and then all of a sudden they want to withdraw treatment and then nobody understands. The family doesn’t understand. They‟ve been here for like 3,4,5,6,7,8 weeks and now all of a sudden you must stop the treatment. So I think...and the decisions that they make, I don‟t think they...we don’t take part in

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the decision making. They...we are told what to do and I think in most of the cases they will try their best, but there are cases that you know there’s nothing going to happen. There could have been financial implications on the family, emotional implications on the family...could have been shortened and made less, but not having the patient suffer to such an extent.

R: Do you find that communication plays a role in there between the doctors and the nurses and the family and the doctors and the family and the nurses?

P: I think communication always does play an important role, but they don’t always want to hear what you say. Sometimes the nurses communicate, but the doctors don‟t want to hear what they have to say. So I think, now also in my opinion, it should be a joint decision, because we are the...a holistic team. We need to do everything together. But there’s one decision maker and that’s the doctor.

R: Do you feel comfortable to approach a doctor and make any suggestions?

P: No. There‟s...I can, there‟s one doctor that I will speak to and also if I thought it through properly. And um, he will listen to a certain extent what you have to offer, but the rest of them I don‟t even think they will listen, truly listen to what you have to say. And there are only some people that they will listen to. There are some people in the unit that can voice their opinion that will be listened to. The rest will be...not important. Even though you are talking sense, you know.

R: Looking at all the things we‟ve discussed...you‟ve shared some of your experiences...you also shared some of your emotions that you have experienced going through these times and how you cope with it and sometimes can‟t cope with it. We looked at what was you have been supported and what you think would be good for the future and also looking at communication with the doctors and approaching doctors. What else...is there anything else that you maybe want to add to that?

P: I think end-of-life is such an important thing. I think it‟s such a journey, not an end. But I think we can make a difference in it. You know that I never ever want to die

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alone in an ICU. I think we can make the experience for the patient so much better if we the nurses have the knowledge and the skill to do that. It almost feels as if people are scared to go stand and hold the dying persons hand. It‟s as if they would be frowned upon. And aren’t we there to comfort, not only he family, but also the patient. Even if they unconscious...just to be there for them. Because a lot of the people we, who are dying, their families aren’t in the unit at the time that they die. And I find it really disturbing that people lie on the bed alone and nurses stand and watch then die instead of just being there. I think that would also change...education will change that. Information, skill will change that.

R: And do you think that education on how to deal with our emotions and feelings would assist that?

P: Absolutely! And I think people are afraid of the process of dying. They not...if you are religious you might not be afraid of death, but you could be afraid of the process and that might also make you not be able to handle that process. And I think if you really are taught skills it would work. I don‟t think that anybody in the 25 years that I‟ve nursed taught me how to deal, skills to deal with death. I‟ve been to lectures about it, but there are no skills that are passed on...you can listen to what you have to do but there are no skills that you can implement, that you can take and do for the rest of your career.

R: Anything else?

P: No.

R: Thank you very much.

118 Annexure K: Field notes

Interviewer: Sr. I. Clifford

Interview date: 08/05/2012 conducted at the hospital

Methodology

The participant was interviewed at the hospital in an isolation room in the intensive care unit. The interview was conducted during the evening as the participant was working night duty. Adequate lighting and ventilation was ensured through open windows and lights. No other persons were present during the interview. The door was kept closed and a notice placed on the door in order to limit interruptions. Interviewer and interviewee sat on soft top chairs opposite one another. Monitor alarms could be heard in the background, yet the interviewee‟s responses to questions were clearly audible.

Personal reflections

The interview was the fifth of 9 interviews and the researcher had become increasingly accustomed to the process of interviewing. The comfort of the participant proved to be encouraging for the researcher, making the interview process less intimidating for the researcher. Eye contact was maintained, except during times when the participant was thinking about a question or formulating a response. During times when the participant was tearful the researcher refrained from providing advice or counselling.

Contributing factors

The participant was very interested in the research topic. The participant was supportive of the research being done and excited about the outcome of the

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research. Impeding factors contributing to the interview: patient very emotional during the interview.

In document The lived experiences of professional nurses with regards to end-of-life issues in the Intensive Care Unit (Page 119-129)