This original research is from the peer reviewed journal, Journal of Advanced Nursing. The paper is a report of a phenomenological qualitative study conducted by a nursing student Kristina E.K. and Professor Britt-Marie Ternestedt to describe the essential structure of the lived experience of patients living with severe chronic obstructive pulmonary disease (COPD) during the palliative phase of the disease or at the end of life. Here the subject of palliative care for chronic obstructive pulmonary disease appears to be a subject which has hardly been studied by researchers. Though it is a common chronic disease and is expected to cause 7% of deaths by 2020 and happens to be the third main cause for death after myocardial infarction and other cardiac illnesses, COPD has not had many takers.
The abstract aptly defines the topic of discussion. The research question is very clearly worded and adequately substantiated (Russell, 2003). The importance of palliative care for chronic pulmonary obstructive disease is expressed and how it should be designed would depend on the answers of the concerned patients in the study. They would be relating the experiences and problems they are going through. The quality of their life is low due to the irreversible and progressive impairment of breathing, symptoms being a chronic cough, shortness of breath and tiredness. They suffer for a long time before being relieved by death. It is surprising that little consideration has been given for palliative care for these patients. Where cancer patients get plenty of sympathy and palliative care, this group needs someone to take up their cause.
In the literature review, the 10 studies selected for mention are from 2000 till 2006. The matter available is very little and gives the impression that there was no study before 2000 on the matter. However the research material selected for review is of high quality and clearly documented (Russell, 2003). Obviously the subject should be of great concern to humanity and patient care. Studies describe the daily variation of symptoms and how restricted and incapacitated the patients are, causing them to be dependent on someone. The patients are unable to consume food but they love ‘shared meals’ as it meant meeting others. Where cancer patients get plenty of sympathy and palliative care, this group is waiting for someone to take up its cause. Literature also points out that
it is difficult to determine when palliative phase begins for COPD patients. This was the same issue that confused the authors of this study at the beginning. They finally decided to include those patients who were on oxygen daily. Literature also indicated that symptomatic treatment provides relief in the palliative phase. One researcher has advised early detection of patient needs by professional caregivers.
Research has still to be done to describe the daily lives of these patients from ‘a lifeworld perspective’ according to the authors. We can understand the motivation for Kristina and Professor Britt-Marie for this study. The fact that little research has been done in this field in spite of the large number of patients suffering from this illness which lowers the quality of life in their terminal days has inspired them. Further it includes the subject of human suffering and the need for palliative care to improve the quality of the life of these chronically ill and severely suffering patients. Palliative care is given to those who are nearing the last days of their lives when providing the best quality for remaining life is more significant than prolonging a miserable life (National Ethics Committee, 2007). The researchers have rightly selected this research as it is urgent that the patients be kept from misery in their terminal days.
The Giorgi’s phenomenological method based on Husserl’s theory of intentionality type of phenomenological design is selected here and it appropriately suits the research question (Crotty, 1998). The researchers have explained the reason for selecting this particular design. Bracketing has been done to avoid including matter expected by the researchers. Of the 40 identified designs in qualitative research (Tesch, 1990), phenomenological studies investigate human experiences which are described by the people involved. ‘Lived experiences’ is the term used. The goal of phenomenological studies is to study the impact of these experiences for each subject. Phenomenological study is employed in areas where little knowledge is available. (Donalek, 2004). This is usually done in a sensitive group of people who are ill or too tired or are feeling hopeless. The researcher has to dwell on the subject and contemplatively uncover the meaning of the ‘lived experience’ in his analysis (Parse, Coyne and Smith, 1985). It entails a deeper understanding of the nature and meaning of the daily lived experiences (van Manen, 1990). A phenomenological study is a difficult proposition for a student with little experience in philosophy (Mariano, 1990). However this study had Professor Britt-Marie with Kristina.
Purposive judgmental criteria sampling was used here. Patients who were receiving care from the Departments of Respiratory Medicine of two hospitals in Sweden
were invited to be participants. The first criterion was that the patients should be in the palliative phase. As there was confusion as to who to add, this was later modified by saying that home oxygen therapy was the characteristic criterion which decided inclusion in the sample. Additional inclusion criteria added that the patients were fit enough to answer and they should be able to speak Swedish. Of the nine patients who filled the criteria (five from one hospital and four from the other), only eight remained for the study 6 were practically on 16 hours of oxygen daily while the other 2 refused oxygen though they needed it. Their ages ranged from 48-79 and there were 5 women and 3 men. The sample was small as in phenomenological studies but still appropriate. The small sample allows a broader exploration into the participants’ experiences.
Aquino-Russell (2006) followed a Giorgi’s descriptive phenomenological method for analysis and synthesis for a study of the experience of hearing loss and altered sense of hearing. She had only seven participants for it. (Aquino-Russell, 2006). Similarly Koivisto et al (2002) applied the phenomenological method of analysis derived from Giorgi to a psychiatric nursing study. Her study had nine adult patients recovering from psychosis and whose experiences of having a mental illness were being studied. The sample size in the study being critiqued is as small as in these two studies and can be considered adequate.
8 Interviews were conducted over a period of 2 months in 2003 to collect data. 6 were at the homes of the participants and 2 were at the hospital. 5 main open-ended questions were used to obtain maximum information on living with COPD in daily life.
The daily life before the illness, difficulties now, how they would cope, their impression of what gave them happiness and thoughts about the future were investigated. Extra questions to further probe for details were added as necessary. The interviews were audiotaped (average time 55minutes) and transcribed verbatim. Data collection can be considered extensive and appropriate for the study. A vast and accurate knowledge of the experiences of the participants is expected from this data collection. There should also be knowledge about their expectations of happiness and freedom from misery in their terminal life. Future plans for palliative care for these patients would be influenced by this study. The documentation of the findings in a table for each patient appears detailed and sufficient for analysis.
There is no ethics issue here. Permission was obtained from the 2 hospital authorities and from the local research ethics committee. Patients were informed sufficiently early about the study design and that it would be voluntary. The patients had the opportunity to decline the participation at three instances: when the nurse informed them, when the researcher telephoned them to get oral consent once more and when they were giving a written consent at the time of the first interview. The ethically sensitive part was that the patients were ill and in the palliative phase. The length of the interview was determined by the patient and he could stop at any moment so this issue too never arose. Even the topics of discussion if uncomfortable to the patient were altered.
The analysis stopping criteria of saturation (Strauss, 1967) or information redundancy (Lincoln and Guba, 1985) has probably been reached as a large amount of information has been collected and documented from so many interviews spread over a period of 2 months (Russell, 2003). Data has been properly analysed. The procedure of Giorgi and Giorgi (2003) has been adopted in all the steps of analysis. The process of analysis has been done in the true fashion of phenomenological studies: in a trustworthy manner. 5 key constituents were identified and integrated to form the common structure of the lived experience. Kristina bracketed her experience of palliative care nursing while her Professor bracketed her experience in research on palliative care. Analytic rigour has been achieved in this study. The study reflects very high standards of research.
The description of findings is adequate and thorough. The patients’ descriptions of the experiences have been in relation to their life prior to illness. Thoughts about the future intermingle with the narration of experiences. Clarity and relevance are the plus points here. The questions seem to be related to the topic and there does not seem to be much messiness. The key constituents integrated in a common structure are the limited living space, changed lifestyle and challenged self image. With all these limitations, the patients still experienced happy times and had the sense of meaningfulness. Their main problems were that they could not do the simple things of daily life and found the exercise ‘draining’ them. They had to plan a lot for their daily activities and the using of oxygen. Difficulty in breathing was the most troublesome. All the participants speak of loneliness. Being dependent on others too restricted their freedom. The waxing and waning of the illness made them mentally and physically ill.
The literature revealed the poorer quality of life led by patients with chronic obstructive pulmonary disease. This poor quality was evident in functional ability and social and emotional well-being when compared to other patients in palliative care. We find that it is difficult to determine when a patient of CPOD goes into the palliative phase. There was literature which said that symptom relief is the important aspect of care.
With this study we find that the living space of COPD patients is also limited. These patients suffer from social isolation and loneliness is a common problem. Patients like to have a dialogue with others. Becoming increasingly dependent on others is a challenge to their dignity, identity and self esteem. Family ideas and experiences of having a COPD patient to look after were not addressed here. However it has been noticed and could be taken up in future research.
The authors have demarcated the limitations in their study. They believe that COPD patients in other geographical regions could be having different experiences.
The findings of this study cannot be generalized for these reasons. Further researches should have repeated interviews, interviews with family members and extend the study to other regions. This could help in generalization or the development of a hypothesis.
The research has been reported in a regular and neat format. Every aspect of the research has been described in detail leaving no doubt whatsoever. The writing is clear, grammatical and concise. Errors of grammar or spelling are not seen. The references are in the APA format. They are mostly new and good references from 2003 to 2006. They are written correctly so that they can be followed easily.
Implications for nursing practice
This study is found to exhibit a moral defensibility (Thorne, 1997) in claiming that really sick COPD patients do need nursing services and that they are miserable physically and mentally and require our attention badly. They are not treated in the same way as cardiac or cancer patients. Much has to be done to bring them under proper palliative care which is the disciplinary relevance in the study. Palliative care seems to have evolved as a specialist discipline in the last two decades (Parish, 2006), It is left to us to find ways and devise techniques for the management of COPD patients in palliative care like for cancer patients and other terminally ill ones. The study has revealed some basic knowledge about what these COPD patients want in their last days. It helps us to develop professional care tailored to the patient’s specific needs (Nordgren, 2008). Future research, by including families in them, would foster more information and a day will be reached when a specific management of COPD patients at various phases including the terminal phase is possible. “Theories within caring science, which are derived from the patient’s own perspectives, can work as frames of interpretation for nurses caring for individuals” (Nordgren, 2008). This study is very clear in its intentions and would form the basis of further ones.
We are able to identify the necessity of making the last days of patients and their families happy and improve the quality of their life when they make that last journey. The improvement of the patient’s and family’s comfort and their quality of life are in the hands of nursing professionals (Meier, 2005). But what constitutes quality at end of life? (Sandelowski , 2003). COPD patients happen to be just one vulnerable group that we have followed in this study. “Qualitative research is an important component of the evidence base for nursing” (Fleming, 2007). It does uncover many instances of patient groups who really need the care of nurses who are dedicated and selfless. Palliative care is a field badly needing changes where evidence based practice is concerned.
I also learned how to make a phenomenological study and where it is used. My understanding of this qualitative study has contributed to my awareness of circumstances that require ‘routine procedures to be adjusted to the particular situations of unique individuals, and which brings the perspectives of patients to the fore at the same time’ (Grypdonck, 2006). The reduced sample size makes it possible for me to do a research in any setting. That patients have problems and they are willing to speak out if given the chance is understood from this study. Sharing their experiences is one manner of getting to know them better.
Their families may not be able to cope due to lack of knowledge or lack of understanding of the patient’s requirements which should include social meetings and freedom from fatigue, difficulty in breathing and reduced appetite. More research has to be done to find out first when the palliative phase in COPD starts and what parameters decide the beginning of the phase. There is a need for clearly setting out a regime of management for COPD patients according to the phase they are in. Their families must be included in the management scheme. I feel that support groups and frequent meetings of like – symptomatic patients may do a mountain of good for these patients before they go into the palliative phase.
I have become more clear-cut in my views about using my practice to relieve the physical and mental problems caused by terminal illnesses. Research from a phenomenological approach provides knowledge that can inform practice beyond the setting where the data set was generated (Nordgren, 2008).
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