Palliative and Supportive Care (2015), 13, 67 –73. # Cambridge University Press, 2013 1478-9515/13 doi:10.1017/S1478951513000886
Experiences of time: A qualitative inquiry into experiences of time as described by palliative care inpatients
MATRA ROBERTSON,
PHD, MSW
University of Sydney, Sydney, Australia (RECEIVED June 9, 2013; ACCEPTED July 9, 2013)
ABSTRACT Objectives: In palliative care, health professionals provide support and care for patients for the duration of the unknown time toward death. While the experiences of patients diagnosed with a life limiting illness in palliative care have received some scholarly attention, little research has explored these experiences as described by palliative inpatients themselves. The purpose of this article is to explore how patients describe their lived experiences of time while in a palliative inpatient facility. Methods: This study used a qualitative phenomenological method and nine inpatients were recruited. They were interviewed utilizing in-depth semi-structured interviews, which were audio taped and transcribed. These interview transcripts of their descriptions were the data sources for this inquiry. Their description is part of a broader phenomenological inquiry on the experience of living with a life limiting illness described by palliative inpatients. Data were analyzed to identify essential themes within and across cases. Results: Three essential themes were revealed: “brief time”; “waiting time,” and “transcendental horizon: future time.” These themes were not mutually exclusive and participant’s experiences of time approaching death were described as a time of living toward death. Significance of results: The findings suggest that patients diagnosed with a life limiting illness have multi-dimensional experiences of time. Understanding the experiences of temporality for patients close to the gravity of death, from the patients’ own words, can provide direction for patient informed interventions in clinical practice. KEYWORDS: Time, End-of-life issues, Palliative care, Phenomenology, Qualitative analysis
INTRODUCTION th
et al., 2003). The purpose of this article is to explore, in the context of Western society, the subjective experiences of a select group of palliative inpatients of time. People diagnosed with a life limiting illness, who are admitted to palliative care, may require health care support for a period from six months to a year. In this context, a dying person can have time to anticipate what their life limiting illness and dying may entail for them, and have time to formulate an opinion as to their ability (or not) to tolerate any suffering that dying may involve for them (Kellehear, 2007). For people with a life limiting illness, recognizing that medically nothing further can to be
st
In Western society during the 20 and early 21 century, scientific, medical, and technological advances mean that dying occurs over a longer period of time, less commonly of brief duration from trauma or infection (Batten, 1994; Cherney, 2005). It is estimated that in the future, 70% to 80% of people in Western society will die later in life, with a slow deterioration of physical function over time (Lunney
Address correspondence and reprint requests to: Matra Robertson, Department of Education and Social Work, University of Sydney, Sydney, Australia. E-mail: [email protected]
67
68 done to cure their disease and that death will occur soon, this holds a potential for stress, ambivalence, and hopelessness for those facing that inevitability. Researchers and clinicians recognize that for people approaching the gravity of their own death, time has a different value (Chochinv, 2011; Heycox, 2009). An awareness of time has been shown to influence the ways patients experience their bodily symptoms (Lindqvist et al., 2008). Little is known however, about the subjective experiences of palliative inpatients and there is a need for comprehensive research into their experiences in general (Faull et al., 2005; Armstrong, 2003). Quantitative research descriptions of the experiences of people diagnosed with a life limiting illness has predominantly focused on the identification, diagnosis and treatment of symptoms of physical, psychological, and spiritual distress (Doyle et al., 2005). Less research has focused on the descriptions of experiences of persons themselves of life limiting illness (Chochinov et al., 1998). Research designs that elucidate a greater exploration of patient’s own experiences during their medical care, with methods congruent with the tenets of palliative care, can be utilized in research to assist health care professionals to reduce symptom burden associated with end of life, and inform those who provide healthcare (Mount, 2003).
METHODS To gain insight into the subjective experiences of palliative inpatients of time, the method used for this study was a qualitative inquiry, utilizing a hermeneutic phenomenological method. Phenomenology emerged in the 20th century as both a philosophy and research method (Heidegger, 1962; MerleauPonty, 1962). Phenomenological method is utilized to study the narratives of individuals in order to clarify their beliefs and experience (van Manen, 1990). Hermeneutic phenomenology is drawn from the interpretative strand of phenomenology (Willig & Billin, 2012). This method was chosen as it offers an opportunity to explore the lived experiences of individuals as described by them (van Manen, 1990). As the focus of this qualitative inquiry is to explore subjective experiences of time as experienced by a select group of palliative inpatients, in-depth semistructured interviews were considered as the most appropriate research approach (Legard et al., 2004). This is not to suggest that the phenomenon of time is fundamentally worldly/objective or psychological/subjective (Brough, 1991). As a phenomenological inquiry, no claims are made about the generalizability of this study.
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The hermeneutic phenomenological technique of Van Manen (1990) was chosen to offer the flexibility required to gain insight into inpatients’ experiences. In this method, narrative interviews are tape recorded and written down in order to produce texts that are then open to interpretation. Therefore a hermeneutical, or a method based on text interpretation, as a research method was required. The present study and data analyzed in this article is part of a larger project exploring lived experiences of inpatients in palliative care (Robertson, 2011). Participants The informants for this study were nine inpatients diagnosed with a life limiting illness. There is no set number of participants required for research with a qualitative methodology. Inclusion criteria included people over the age of 18 years, with a life expectancy of less than two years and who were aware of this prognosis. Participants had English literacy sufficient to provide informed consent. The diagnoses of participants included cancer of the prostate; colorectal cancer; melanoma of leg; hepatocellular carcinoma; chronic renal failure; cancer of the lung; and congestive cardiac failure. Two participants were married, four divorced, and three were widows. In terms of religious affiliation, three participants identified themselves as members of the Anglican Church of Australia, one from the Presbyterian Church of Australia, one as Judaic, and four had no affiliation. Individuals with a confirmed preexisting psychiatric diagnosis and people deemed too unwell by their palliative care physician, in terms of their delirium or pain, were excluded. Two ethical review panels, representing an academic institution and the hospital site of the research involved approved the study to protect the participant anonymity, confidentiality, storage and transmission of data. Data Collection The data were collected via in-depth, semi-structured, face-to-face interviews with each participant. Potential participants were provided with written information about the study. If the patient agreed to participate, written consent was obtained and the voluntary nature of participation in the study reinforced. They were interviewed once for the average duration of one hour. To protect participant’s limited energy reserves due to illness, participants chose the place and time of their interviews, either at their bedside or in a private room. Interviews were recorded, coded by number to de-identify participants, transcribed verbatim and later checked for accuracy against the transcriptions.
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Experiences of time
In transcriptions pseudonyms replaced names and so that anonymity was guaranteed in the reporting of all the results. The recommended practice of an audit trail of analytical decisions was conducted during the data collection (Armour, Rivauw, Bell, 2009). Data Analysis Interviews of patient’s narratives were analyzed using the hermeneutic model of phenomenological reflection as described by van Manen (1990). In this process, analysis and interpretation relate to each other in a cyclical (iterative) manner, first by the researcher reading to gain an initial impression of the experience of the participants and by detailed reading of every sentence and sentence cluster, to reveal data about the phenomenon (van Manen, 1990). Second, parts of the interview text were structurally analyzed to develop meaning units. The meaning units were compared across interviews and then abstracted into themes (Grbich, 2007). Finally, through this process, an exploration occurred of the essential themes. Specific participants’ statements were then selected to reveal the generated themes for all the participants’ (van Manen, 1990). To enhance validity in a hermeneutic phenomenological study, the recommended practice of documentation of rival/divergent patterns in the data, and thick description of the data was implemented (Armour et al., 2009).
RESULTS The aim of this inquiry was to gain insight into the knowledge participants had of their experiences of time while palliative inpatients. For the participants interviewed in this study, the findings reflect the ways participants narrated in their interviews their experiences of time. These major notions of time were synthesized into three main themes. Arising from the data and written in the language of the participants, they comprise the findings for the inquiry. The first theme addressed participants experience of time as the implications of their limited prognosis was absorbed by them and time had a heightened value and it was named “brief time,” The second theme “waiting time” captured their experiences of waiting for desired outcomes, including health care for distressing physical symptoms. The third theme “transcendental horizon: future time,” reveals how inpatients in palliative care face a future time, where for some participants there were “transcendental” experiences of living toward death, to a life after death. These themes were not mutually exclusive.
Theme One: Brief Time The experiences that patients diagnosed with a life limiting illness related were an experience where, even if physically thin and frail, a person can still feel in command of their social world, be still working and have an active social life. One participant Anne, developed shortness of breath walking up a hill, and consulted her medical practitioner. Anne understood her breathlessness as “low blood pressure.” Her medical practitioner did not confirm this assessment, and ordered more medical tests. As Anne explained in her interview, her awareness of time changed as her life situation was impacted upon by her diagnosis of a life limiting illness. She entered what can be described as “brief time”: Anne: The only question they can’t answer for me is how long I have got to go? I don’t want a drawn out affair, but they can’t do anything about that any more than I can. I know I can’t stay here indefinitely, but I don’t know whether it’s going to be next week or next month or whatever. They told me weeks ago it would probably be weeks, but well that’s gone now so I don’t know what else now. Researcher: So when they were saying “it could be weeks” was that the amount of time you would be in here (inpatient palliative care) or did they mean something else? Anne: No. The time I would be here. I assumed that. I said ‘how long would it take?’ They said there is no way of knowing that. It’s possibly weeks. That’s when they first told me. It was all a bit of a shock! This was the last place I expected to be. For participants, the experience of the dimension of “brief time” in “how long would it (dying) take?” was associated with an experience of time moderated by the physician’s referral of the participant to inpatient palliative care. With her disease progression, Anne’s sense of an indefinite time ahead for her life, changed to a life with uncertainty in “brief time.” Participants reported their physical decline was associated with a change in their subjective experience of time. Carol, for example, experienced unexplained weight loss and underwent medical tests and multiple admissions to hospital. In the following extract, Carol emphasizes that when there is nothing to be done medically to cure, a transition into what can be described as ‘brief time’ occurs with the transfer to palliative care: Carol: They found a spot in the bottom of the bowel. They would investigate and see what that was. I
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thought they would find out whether it was malignant or benign or whatever they say. So when I rang up on the Monday and I had actually had to go back to hospital, they did more tests and put things together and they said “Well, we won’t bother about the test, because we’ve got the CAT scan together with the ultrasound.” And they found it started in the bowel and it had gone all through the liver. He said “It’s not worthwhile doing the tests. I am sorry to tell you that there is nothing we can do. The best advice I can offer is to come over here into Palliative Care.” That was it!
beings were a source of meaning and a priority in ‘brief time’:
Carol became aware that her illness was life limiting and with impending mortality, no more medical tests required. When a patient is told that medically nothing can be done, in that place of vulnerability, experiences of time are heightened. Participants reported not always being able to realize the full implications of the important medical decisions involving consent they have to make in “brief time.” Participants described life situations where events happened quickly, with little adjustment time for family or indeed for themselves. In “brief time,” a quick death, albeit a possibly painful one, was seen by participants like David as preferable to long dying.
Participants’ described the palliative hospital ward with nicknames involving time, for example: “this is God’s waiting room.” A waiting room is a place to linger, or wait for something else to occur. In this context, for the participants, the wait can be for one’s own imminent death. A present orientated focus can be a conscious strategy by people with life limiting illness to assist them to hold onto a “normal” sense of self by focusing on present time (Lawton, 2000). As patients’ become aware that they have only so much available time to live, then “waiting time” becomes a time with potential for conversations with others, savoring good experiences and feelings. Ben experienced his present “waiting time” as a gift of time in which to give to others, by trying to be a “bearer of joy” in his social relationships. Ben explained: “Every joy becomes a gift from God. That’s why it’s called ‘the present’” (Ben). Yet “waiting time” can be frustrating for patients if they spent time waiting for nursing assistance. Alan explained that the physical demands of cancer symptoms made him urinate frequently. Cachectic from his illness and vulnerable, Alan was confined to bed and unable to walk unassisted to a bathroom. He spent time waiting for nursing help to walk him to the toilet and he said this lowered his mood.
David: If I’d had more time! It was quick! I didn’t know I had cancer, nothing! It was just days and I said to Dr-, he’s currently the best surgeon over there in the field they told me. I said “What’s the alternative to surgery?” and he said “You’ll die in agony.” And I should have said, “Well take me to the hospice and I’ll die in agony there.” I had the surgery and I’ve been sorry I had it. I’d have liked to have gone then. Some participants experienced uncertainty about the implications of proposed medical treatment and possible pain associated with their disease progression. Pain is a common symptom in patients with cancer (Doyle & Jeffrey, 2003). In “brief time,” action to alleviate pain may be taken urgently and time may not be available for patients to assimilate and process important information regarding their medical condition. In “brief time,” participant’s awareness of their imminent dying can influence interactions with the social world that becomes more meaningful. For example, in the following extract, Mary explains that when she was diagnosed with a life limiting illness, her “brief time” was important to her to organize her affairs, by giving away her valuable remaining belongings to her friends and family. Relationships in her social world with other human
Mary: I had never thought about anything like this (i.e., dying). You don’t until things pop up and you have to deal with them. I have had the time to organize a lot of things. I have got a lot of clothes, very nice clothes, if I may say so, and I have had time to distribute them amongst my friends and, you know, all that sort of thing. Theme Two: Waiting Time
Alan: Day and night I am doing nothing but waiting, waiting to go to the toilet. It was a torment and breaking me down because my resistance is gone. Following hospital safety procedures, the nurses raised the rails of his bed at night and thereby restrained him. Alan: Here they put the rails (bed) up and say that is so I can’t get out. I don’t think that’s a real good idea. Still they have got a reason for it. They are short staffed and they can’t watch everyone. In “waiting time” actions such as being escorted to the bathroom or waiting for someone’s help to get
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out of bed, occurred according to the time priorities of the health care professionals. In experiences of “waiting time,” for another participant it was an opportunity to express some autonomy. Frank’s level of physical weakness was such that he reframed waiting as paradoxically, one of his coping strategies where he saw possible benefits of waiting. He used “waiting time” as a coping mechanism to deal with his breathlessness and reliance on oxygen: Frank: Yeah, a bit worn down. But that goes if I wait a while. I don’t know what they are going to do. Some of Frank’s breathlessness temporarily eased for him, if he waited calmly till he regained his breath. Theme Three: A Transcendental Horizon: Future Time Although, in one sense dying and death could be said to always be part of the existential life world for any adult, nevertheless with a diagnosis of a life limiting illness, awareness of death may move closer for an ill person when they are admitted to a place designated as “palliative.” When admitted to palliative care, an individual can become aware, in the naming of the place as “palliative,” that they are entering a context of dying — even if physically — their death does not occur immediately. In this mode of being some participants focused on how they fitted into a bigger picture apart from their day-to-day physical/social self. Patients with advanced disease, have lower psychological distress if they develop such meaning reconstruction (Lee et al., 2004). Keira explained what can be described as an experience of “transcendental horizon: future time” as a place where meaningful relationships, drawn from past memories continue to exist. With the progression of her cancer, she remembered past encounters with her father and these memories emotionally and spiritually sustained her: Keira: I always remember my daddy telling me. I was wanting to come down to Sydney and live with my boyfriend. (LAUGHS) On a long weekend. And I cried to him because I said I didn’t want to leave my granddad who had pneumonia at the time. And he gave me a little lesson. He said “Darling this is your life. One day you’ll wait for me to die and I’ll be waiting for you to die. And then it goes on and on and you must not be frightened or scared, because that’s the way it is. We’re all just going to heaven, like leaves fitting together,” is how he put it. My father was a farmer and lived close to the earth.
Researcher: Did you say leaves?’ Keira: Yes, he said ‘like leaves kind of all fitting together on a long branch’. You know? Keira anticipated a post-death time, an afterlife experience of going to heaven that was not an experience of separation from life. Instead she believed it would be an experience where she could be as close to her deceased father, as leaves fit together ‘on a long branch’ of the same tree. The ability to find meaning was a source of peace and hope for participants. This “transcendental horizon: future time” for other participants was a place of being in the world where worries from their social world ended. For Frank, death was not something to think about as he thought post death he would be in a transcendental future time where his “worries” would be over. Frank: I mean I know I am going to die, but it doesn’t worry me because the way I look at it, when I die my worries are over. Ben, another participant described his awareness of future time in this statement: “You know there is something, you don’t know exactly what it is and I believe this.” In his existential lifeworld, Ben believed he would find out what the experience of ‘something’ was that followed death. DISCUSSION In this article, the temporal experiences of a select group of inpatients in palliative care has been explored utilizing a hermeneutic phenomenological analysis. The interviews were rich in descriptions and identified different ways participants make sense and meanings when living with a life limiting illness. The findings suggest that for the participants interviewed, there was not one experience of time. Each participant faced a biological event in terms of death, in a context that held multidimensional meanings for them. Participants described “brief time” as a time of urgent decisions. This suggests a complex balancing process for individuals between medical imperatives and ways of finding autonomy in their care. By offering more time for patients to assimilate information at specific points during their care, as discussed by Carol, the actual experience of health care may improve for patients. The difficulty in communication palliative patients have surrounding their care, has been observed (Jarrett et al., 2012). Carol’s experience of time was part of a complex context of care where participants faced a challenge in realizing the full implications,
72 and the level of choices available in consenting (or not) to proposed medical interventions. Palliative inpatients may simply not have time to weigh up the pros and cons of proposed treatments or interventions. To avoid iatrogenic distress, more research is needed to target timing and communication in clinical care, and in the processes of admission to palliative care. In “brief time,” participants were confronted with the potential loss of their body through death. Although physicians may not specifically use the word “dying” or “death,” participants become aware, in their admission to palliative care, that this may be the last stop on their journey as they travel symbolically into “brief time.” In her interview, Anne asked her physician urgently “how long will it take?” It is challenging to understand how “objective” or clock time feels when an individual’s future time is taken away through life limiting illness. Lived time has a modality of hope in a future, where a person’s health and life may get better. With a growing awareness on some level of the annihilation of temporality and one’s being, an individual moves into a particular temporal world. In this temporal world, people with a life limiting illness can encounter a profound distortion of how time is experienced and valued as death approaches (Chochinov, 2011). Indeed, moments of time become precious in the gravity of approaching death (Chochinov, 2011). This was evident in Ben’s description of his experience of “brief time” as a gift. Aspects of agency and autonomy can be found in patients at this point (Kaufman, 2005). Although faced with loss of the body in physical decline to death, Anne demonstrated agency and autonomy in prioritizing time to allocate precious gifts of clothing and belongings to family and friend in her social world. With a phenomenological lens, in waiting time, hope has been found to underlie the experience of waiting (Bollnow, 1989). Hope refers to a future expectation, with the exact occurrence of the hoped for event unknown. It lies at a vague moment in the future. A “temporal inertia” of hospice inpatients has been described elsewhere, where patients were reported as playing a “waiting game” with a lack a sense of future self (Lawton, 2000). Yet from this inquiry, the findings for example from Frank’s interview, suggest that regardless of feeling “worn down,” Frank knew from his prior experience that by waiting, his symptom of breathlessness would ease. In ‘waiting time’ he hoped to improve his present experience of distressing symptoms. Participants pointed to a time where relationships continue after death “like leaves fitting together.” In this transcendental horizon: future time: “one’s previous perception of life as stretching into a never-end-
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ing future, and a realization of the full meaning of finitude” (Leman-Stefanovic, 1987, p. 171) are part of the context of daily experience of care. Palliative patients in the context of daily care, experience vulnerability and dependency in a society avoidant of death (Chochinov, 2012). The findings reported here highlight the knowledge of the interviewed patient’s own perspective, a diagnosis of a life limiting illness and admission to inpatient palliative care is not only a physical experience of vulnerability, but is also an experience that is evaluated as part of a person’s meaning making. For patients time takes on numerous meanings in the context of inpatient palliative care. As time is part of the experience of end of life, then an implication for healthcare practice is to re-acknowledge the importance of time to the person diagnosed with a life limiting illness and provide sufficient resources — including time — to offer the opportunity for patients to engage in their “brief time” and communicate or experience what is uniquely of importance to them. The clinical implications of the findings point to the importance of offering care and support to reduce psychosocial distress in individuals diagnosed with a life limiting illness, in a delicate balance of past, present and future time priorities for the patient. It is hoped these findings will help support people with a life limiting illness to recognize the need for time to assimilate and process information. Healthcare professionals can assist palliative inpatients to take the time they need to ask questions or express any concerns they may have. Further research to consider interventions to provide patients an opportunity to debrief and review their admission to palliative care would be beneficial to prioritize the whole person care and psycho-social well-being of palliative patients.
REFERENCES Armour, M., Rivauw, S. L., & Bell, H. (2009). Using the context to build rigor. Qualitative Social Work, 8, 101– 22. Armstrong, T.S. (2003). Symptoms experience: A concept analysis. Oncology Nursing Forum, 30, 601 –606. Batten, M. (1994). The Least Worst Death: Essays in the Bioethics on the End of Life. New York: Oxford University Press. Bollnow, O.F. (1989). The pedagogical atmosphere. Phenomenology and Pedagogy, 7, 5– 76. Brough, J.B. (1991). Translator’s Introduction. In On Phenomenology of the Consciousness of Internal Time (1893–1917), Husserl, E. (ed.). Dordrecht: Kluwer Academic Publishers. Cherney, N. I. (2005). The problem of suffering. In Oxford Textbook of Palliative Medicine, Doyle, D., Hanks, W.C., Cherry, N.E. & Calman, K.C. (Eds.), Third Edition. New York: Oxford University Press Inc.
Experiences of time Chochinov, H. M. (2011). Death, time and the theory of relativity. Journal of Pain and Symptom Management, 42, 460–463. Chochinov, H. M. (2012). Relatively speaking. Journal of Pain and Symptom Management, 43, e6 –e7. Chochinov, H. M., Wilson, K. G., Ennis, M. & Lander, S. (1998). Depression, hopelessness, and suicidal ideation in the terminally ill. Psychosomatics, 39, 366 –370. Doyle, D. & Jeffrey, D. (2003). Palliative Care in the Home. New York: Oxford University Press Inc. Doyle, D., Hanks, W. C., Cherry, N. I. & Calman, K. C. (2005). Introduction. In Oxford Textbook of Palliative Medicine, Doyle, D., Hanks, W.C., Cherry, N.I. & Calman, K. C. (eds.), Third Edition. New York: Oxford University Press Inc. Faull, C., Carter, Y. & Daniels, L. (2005). Handbook of Palliative Care. Second Edition. Blackwell. Grbich, C. (2007). Qualitative Data Analysis. London: Sage Publications Ltd. Heidegger, M. (1962). Being and Time. New York: Harper & Row. Jarrett, N., Porter, K., Addington-Hall, J., Corner, J., Davis, C., Duke & Lathlean, J. (2012). How do people with cancer and palliative care needs understand and contribute to the management of communication surrounding their care? BMJ Supportive & Palliative Care, 2, 1–28. Kaufman, S. (2005). And a Time to Die: How American Hospitals Shape the End of Life. Chicago: University of Chicago Press. Kegan, Paul & Mount, B. (2003). Existential suffering and the determinants of healing. European Journal of Palliative Care, 10 (Suppl.), 40–42.
73 Kellehear, A. (2007). A Social History of Dying. MelbourneCambridge University Press. Lawton, J. (2000). The Dying Process: Patients’ Experiences of Palliative Care. New York: Rutledge. Lee, V., Cohen, S.R., Edgar, L., Laizner, A.M. & Gagnon, A. (2004). Clarifying ‘meaning’ in the context of cancer research: A systematic literature review. Palliative and Supportive Care, 2, 291 – 303. Legard, R., Keegan, J. & Ward, K. (2004). In-depth interviews. In Qualitative Research Practice, Ritchie, J. & Lewis, J. (eds). London: Sage Publications Ltd. Leman-Stefanovic, I. (1987). The Event of Death: A Phenomenological Enquiry. Dordrecht: Martinus Nijhoff Publishers. Lindqvist, O., Rasmussen, B.H., Widmark, A. & Hyden, L.C, (2008). Time and bodily changes in advanced prostate cancer: Talk about time as death approaches. Journal of Pain and Symptom Management, 36, 648 –656. Lunney, J. R., Lynn, J., Foley, D. J., Lipson, S. & Guralnik, J. M. (2003). Patterns of functional decline at the end of life. Journal of the American Medical Association, 289, 2387– 2392. Merleau-Ponty, M. (1962). Phenomenology of Perception (trans. C. Smith). London: Routledge. Robertson, M. R. (2011). A Phenomenological Exploration of Hope, Hopelessness and a Desire for Death for Terminally Ill People in Palliative Care. Doctoral dissertation, University of Sydney. Van Manen, M. (1990). Researching the Lived Experience: Human Science for an Action Sensitive Pedagogy. Ontario: Alehouse Press.
Experiences of time: A qualitative inquiry into experiences of time as described by palliative care inpatients
MATRA ROBERTSON,
PHD, MSW
University of Sydney, Sydney, Australia (RECEIVED June 9, 2013; ACCEPTED July 9, 2013)
ABSTRACT Objectives: In palliative care, health professionals provide support and care for patients for the duration of the unknown time toward death. While the experiences of patients diagnosed with a life limiting illness in palliative care have received some scholarly attention, little research has explored these experiences as described by palliative inpatients themselves. The purpose of this article is to explore how patients describe their lived experiences of time while in a palliative inpatient facility. Methods: This study used a qualitative phenomenological method and nine inpatients were recruited. They were interviewed utilizing in-depth semi-structured interviews, which were audio taped and transcribed. These interview transcripts of their descriptions were the data sources for this inquiry. Their description is part of a broader phenomenological inquiry on the experience of living with a life limiting illness described by palliative inpatients. Data were analyzed to identify essential themes within and across cases. Results: Three essential themes were revealed: “brief time”; “waiting time,” and “transcendental horizon: future time.” These themes were not mutually exclusive and participant’s experiences of time approaching death were described as a time of living toward death. Significance of results: The findings suggest that patients diagnosed with a life limiting illness have multi-dimensional experiences of time. Understanding the experiences of temporality for patients close to the gravity of death, from the patients’ own words, can provide direction for patient informed interventions in clinical practice. KEYWORDS: Time, End-of-life issues, Palliative care, Phenomenology, Qualitative analysis
INTRODUCTION th
et al., 2003). The purpose of this article is to explore, in the context of Western society, the subjective experiences of a select group of palliative inpatients of time. People diagnosed with a life limiting illness, who are admitted to palliative care, may require health care support for a period from six months to a year. In this context, a dying person can have time to anticipate what their life limiting illness and dying may entail for them, and have time to formulate an opinion as to their ability (or not) to tolerate any suffering that dying may involve for them (Kellehear, 2007). For people with a life limiting illness, recognizing that medically nothing further can to be
st
In Western society during the 20 and early 21 century, scientific, medical, and technological advances mean that dying occurs over a longer period of time, less commonly of brief duration from trauma or infection (Batten, 1994; Cherney, 2005). It is estimated that in the future, 70% to 80% of people in Western society will die later in life, with a slow deterioration of physical function over time (Lunney
Address correspondence and reprint requests to: Matra Robertson, Department of Education and Social Work, University of Sydney, Sydney, Australia. E-mail: [email protected]
67
68 done to cure their disease and that death will occur soon, this holds a potential for stress, ambivalence, and hopelessness for those facing that inevitability. Researchers and clinicians recognize that for people approaching the gravity of their own death, time has a different value (Chochinv, 2011; Heycox, 2009). An awareness of time has been shown to influence the ways patients experience their bodily symptoms (Lindqvist et al., 2008). Little is known however, about the subjective experiences of palliative inpatients and there is a need for comprehensive research into their experiences in general (Faull et al., 2005; Armstrong, 2003). Quantitative research descriptions of the experiences of people diagnosed with a life limiting illness has predominantly focused on the identification, diagnosis and treatment of symptoms of physical, psychological, and spiritual distress (Doyle et al., 2005). Less research has focused on the descriptions of experiences of persons themselves of life limiting illness (Chochinov et al., 1998). Research designs that elucidate a greater exploration of patient’s own experiences during their medical care, with methods congruent with the tenets of palliative care, can be utilized in research to assist health care professionals to reduce symptom burden associated with end of life, and inform those who provide healthcare (Mount, 2003).
METHODS To gain insight into the subjective experiences of palliative inpatients of time, the method used for this study was a qualitative inquiry, utilizing a hermeneutic phenomenological method. Phenomenology emerged in the 20th century as both a philosophy and research method (Heidegger, 1962; MerleauPonty, 1962). Phenomenological method is utilized to study the narratives of individuals in order to clarify their beliefs and experience (van Manen, 1990). Hermeneutic phenomenology is drawn from the interpretative strand of phenomenology (Willig & Billin, 2012). This method was chosen as it offers an opportunity to explore the lived experiences of individuals as described by them (van Manen, 1990). As the focus of this qualitative inquiry is to explore subjective experiences of time as experienced by a select group of palliative inpatients, in-depth semistructured interviews were considered as the most appropriate research approach (Legard et al., 2004). This is not to suggest that the phenomenon of time is fundamentally worldly/objective or psychological/subjective (Brough, 1991). As a phenomenological inquiry, no claims are made about the generalizability of this study.
Robertson
The hermeneutic phenomenological technique of Van Manen (1990) was chosen to offer the flexibility required to gain insight into inpatients’ experiences. In this method, narrative interviews are tape recorded and written down in order to produce texts that are then open to interpretation. Therefore a hermeneutical, or a method based on text interpretation, as a research method was required. The present study and data analyzed in this article is part of a larger project exploring lived experiences of inpatients in palliative care (Robertson, 2011). Participants The informants for this study were nine inpatients diagnosed with a life limiting illness. There is no set number of participants required for research with a qualitative methodology. Inclusion criteria included people over the age of 18 years, with a life expectancy of less than two years and who were aware of this prognosis. Participants had English literacy sufficient to provide informed consent. The diagnoses of participants included cancer of the prostate; colorectal cancer; melanoma of leg; hepatocellular carcinoma; chronic renal failure; cancer of the lung; and congestive cardiac failure. Two participants were married, four divorced, and three were widows. In terms of religious affiliation, three participants identified themselves as members of the Anglican Church of Australia, one from the Presbyterian Church of Australia, one as Judaic, and four had no affiliation. Individuals with a confirmed preexisting psychiatric diagnosis and people deemed too unwell by their palliative care physician, in terms of their delirium or pain, were excluded. Two ethical review panels, representing an academic institution and the hospital site of the research involved approved the study to protect the participant anonymity, confidentiality, storage and transmission of data. Data Collection The data were collected via in-depth, semi-structured, face-to-face interviews with each participant. Potential participants were provided with written information about the study. If the patient agreed to participate, written consent was obtained and the voluntary nature of participation in the study reinforced. They were interviewed once for the average duration of one hour. To protect participant’s limited energy reserves due to illness, participants chose the place and time of their interviews, either at their bedside or in a private room. Interviews were recorded, coded by number to de-identify participants, transcribed verbatim and later checked for accuracy against the transcriptions.
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In transcriptions pseudonyms replaced names and so that anonymity was guaranteed in the reporting of all the results. The recommended practice of an audit trail of analytical decisions was conducted during the data collection (Armour, Rivauw, Bell, 2009). Data Analysis Interviews of patient’s narratives were analyzed using the hermeneutic model of phenomenological reflection as described by van Manen (1990). In this process, analysis and interpretation relate to each other in a cyclical (iterative) manner, first by the researcher reading to gain an initial impression of the experience of the participants and by detailed reading of every sentence and sentence cluster, to reveal data about the phenomenon (van Manen, 1990). Second, parts of the interview text were structurally analyzed to develop meaning units. The meaning units were compared across interviews and then abstracted into themes (Grbich, 2007). Finally, through this process, an exploration occurred of the essential themes. Specific participants’ statements were then selected to reveal the generated themes for all the participants’ (van Manen, 1990). To enhance validity in a hermeneutic phenomenological study, the recommended practice of documentation of rival/divergent patterns in the data, and thick description of the data was implemented (Armour et al., 2009).
RESULTS The aim of this inquiry was to gain insight into the knowledge participants had of their experiences of time while palliative inpatients. For the participants interviewed in this study, the findings reflect the ways participants narrated in their interviews their experiences of time. These major notions of time were synthesized into three main themes. Arising from the data and written in the language of the participants, they comprise the findings for the inquiry. The first theme addressed participants experience of time as the implications of their limited prognosis was absorbed by them and time had a heightened value and it was named “brief time,” The second theme “waiting time” captured their experiences of waiting for desired outcomes, including health care for distressing physical symptoms. The third theme “transcendental horizon: future time,” reveals how inpatients in palliative care face a future time, where for some participants there were “transcendental” experiences of living toward death, to a life after death. These themes were not mutually exclusive.
Theme One: Brief Time The experiences that patients diagnosed with a life limiting illness related were an experience where, even if physically thin and frail, a person can still feel in command of their social world, be still working and have an active social life. One participant Anne, developed shortness of breath walking up a hill, and consulted her medical practitioner. Anne understood her breathlessness as “low blood pressure.” Her medical practitioner did not confirm this assessment, and ordered more medical tests. As Anne explained in her interview, her awareness of time changed as her life situation was impacted upon by her diagnosis of a life limiting illness. She entered what can be described as “brief time”: Anne: The only question they can’t answer for me is how long I have got to go? I don’t want a drawn out affair, but they can’t do anything about that any more than I can. I know I can’t stay here indefinitely, but I don’t know whether it’s going to be next week or next month or whatever. They told me weeks ago it would probably be weeks, but well that’s gone now so I don’t know what else now. Researcher: So when they were saying “it could be weeks” was that the amount of time you would be in here (inpatient palliative care) or did they mean something else? Anne: No. The time I would be here. I assumed that. I said ‘how long would it take?’ They said there is no way of knowing that. It’s possibly weeks. That’s when they first told me. It was all a bit of a shock! This was the last place I expected to be. For participants, the experience of the dimension of “brief time” in “how long would it (dying) take?” was associated with an experience of time moderated by the physician’s referral of the participant to inpatient palliative care. With her disease progression, Anne’s sense of an indefinite time ahead for her life, changed to a life with uncertainty in “brief time.” Participants reported their physical decline was associated with a change in their subjective experience of time. Carol, for example, experienced unexplained weight loss and underwent medical tests and multiple admissions to hospital. In the following extract, Carol emphasizes that when there is nothing to be done medically to cure, a transition into what can be described as ‘brief time’ occurs with the transfer to palliative care: Carol: They found a spot in the bottom of the bowel. They would investigate and see what that was. I
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thought they would find out whether it was malignant or benign or whatever they say. So when I rang up on the Monday and I had actually had to go back to hospital, they did more tests and put things together and they said “Well, we won’t bother about the test, because we’ve got the CAT scan together with the ultrasound.” And they found it started in the bowel and it had gone all through the liver. He said “It’s not worthwhile doing the tests. I am sorry to tell you that there is nothing we can do. The best advice I can offer is to come over here into Palliative Care.” That was it!
beings were a source of meaning and a priority in ‘brief time’:
Carol became aware that her illness was life limiting and with impending mortality, no more medical tests required. When a patient is told that medically nothing can be done, in that place of vulnerability, experiences of time are heightened. Participants reported not always being able to realize the full implications of the important medical decisions involving consent they have to make in “brief time.” Participants described life situations where events happened quickly, with little adjustment time for family or indeed for themselves. In “brief time,” a quick death, albeit a possibly painful one, was seen by participants like David as preferable to long dying.
Participants’ described the palliative hospital ward with nicknames involving time, for example: “this is God’s waiting room.” A waiting room is a place to linger, or wait for something else to occur. In this context, for the participants, the wait can be for one’s own imminent death. A present orientated focus can be a conscious strategy by people with life limiting illness to assist them to hold onto a “normal” sense of self by focusing on present time (Lawton, 2000). As patients’ become aware that they have only so much available time to live, then “waiting time” becomes a time with potential for conversations with others, savoring good experiences and feelings. Ben experienced his present “waiting time” as a gift of time in which to give to others, by trying to be a “bearer of joy” in his social relationships. Ben explained: “Every joy becomes a gift from God. That’s why it’s called ‘the present’” (Ben). Yet “waiting time” can be frustrating for patients if they spent time waiting for nursing assistance. Alan explained that the physical demands of cancer symptoms made him urinate frequently. Cachectic from his illness and vulnerable, Alan was confined to bed and unable to walk unassisted to a bathroom. He spent time waiting for nursing help to walk him to the toilet and he said this lowered his mood.
David: If I’d had more time! It was quick! I didn’t know I had cancer, nothing! It was just days and I said to Dr-, he’s currently the best surgeon over there in the field they told me. I said “What’s the alternative to surgery?” and he said “You’ll die in agony.” And I should have said, “Well take me to the hospice and I’ll die in agony there.” I had the surgery and I’ve been sorry I had it. I’d have liked to have gone then. Some participants experienced uncertainty about the implications of proposed medical treatment and possible pain associated with their disease progression. Pain is a common symptom in patients with cancer (Doyle & Jeffrey, 2003). In “brief time,” action to alleviate pain may be taken urgently and time may not be available for patients to assimilate and process important information regarding their medical condition. In “brief time,” participant’s awareness of their imminent dying can influence interactions with the social world that becomes more meaningful. For example, in the following extract, Mary explains that when she was diagnosed with a life limiting illness, her “brief time” was important to her to organize her affairs, by giving away her valuable remaining belongings to her friends and family. Relationships in her social world with other human
Mary: I had never thought about anything like this (i.e., dying). You don’t until things pop up and you have to deal with them. I have had the time to organize a lot of things. I have got a lot of clothes, very nice clothes, if I may say so, and I have had time to distribute them amongst my friends and, you know, all that sort of thing. Theme Two: Waiting Time
Alan: Day and night I am doing nothing but waiting, waiting to go to the toilet. It was a torment and breaking me down because my resistance is gone. Following hospital safety procedures, the nurses raised the rails of his bed at night and thereby restrained him. Alan: Here they put the rails (bed) up and say that is so I can’t get out. I don’t think that’s a real good idea. Still they have got a reason for it. They are short staffed and they can’t watch everyone. In “waiting time” actions such as being escorted to the bathroom or waiting for someone’s help to get
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out of bed, occurred according to the time priorities of the health care professionals. In experiences of “waiting time,” for another participant it was an opportunity to express some autonomy. Frank’s level of physical weakness was such that he reframed waiting as paradoxically, one of his coping strategies where he saw possible benefits of waiting. He used “waiting time” as a coping mechanism to deal with his breathlessness and reliance on oxygen: Frank: Yeah, a bit worn down. But that goes if I wait a while. I don’t know what they are going to do. Some of Frank’s breathlessness temporarily eased for him, if he waited calmly till he regained his breath. Theme Three: A Transcendental Horizon: Future Time Although, in one sense dying and death could be said to always be part of the existential life world for any adult, nevertheless with a diagnosis of a life limiting illness, awareness of death may move closer for an ill person when they are admitted to a place designated as “palliative.” When admitted to palliative care, an individual can become aware, in the naming of the place as “palliative,” that they are entering a context of dying — even if physically — their death does not occur immediately. In this mode of being some participants focused on how they fitted into a bigger picture apart from their day-to-day physical/social self. Patients with advanced disease, have lower psychological distress if they develop such meaning reconstruction (Lee et al., 2004). Keira explained what can be described as an experience of “transcendental horizon: future time” as a place where meaningful relationships, drawn from past memories continue to exist. With the progression of her cancer, she remembered past encounters with her father and these memories emotionally and spiritually sustained her: Keira: I always remember my daddy telling me. I was wanting to come down to Sydney and live with my boyfriend. (LAUGHS) On a long weekend. And I cried to him because I said I didn’t want to leave my granddad who had pneumonia at the time. And he gave me a little lesson. He said “Darling this is your life. One day you’ll wait for me to die and I’ll be waiting for you to die. And then it goes on and on and you must not be frightened or scared, because that’s the way it is. We’re all just going to heaven, like leaves fitting together,” is how he put it. My father was a farmer and lived close to the earth.
Researcher: Did you say leaves?’ Keira: Yes, he said ‘like leaves kind of all fitting together on a long branch’. You know? Keira anticipated a post-death time, an afterlife experience of going to heaven that was not an experience of separation from life. Instead she believed it would be an experience where she could be as close to her deceased father, as leaves fit together ‘on a long branch’ of the same tree. The ability to find meaning was a source of peace and hope for participants. This “transcendental horizon: future time” for other participants was a place of being in the world where worries from their social world ended. For Frank, death was not something to think about as he thought post death he would be in a transcendental future time where his “worries” would be over. Frank: I mean I know I am going to die, but it doesn’t worry me because the way I look at it, when I die my worries are over. Ben, another participant described his awareness of future time in this statement: “You know there is something, you don’t know exactly what it is and I believe this.” In his existential lifeworld, Ben believed he would find out what the experience of ‘something’ was that followed death. DISCUSSION In this article, the temporal experiences of a select group of inpatients in palliative care has been explored utilizing a hermeneutic phenomenological analysis. The interviews were rich in descriptions and identified different ways participants make sense and meanings when living with a life limiting illness. The findings suggest that for the participants interviewed, there was not one experience of time. Each participant faced a biological event in terms of death, in a context that held multidimensional meanings for them. Participants described “brief time” as a time of urgent decisions. This suggests a complex balancing process for individuals between medical imperatives and ways of finding autonomy in their care. By offering more time for patients to assimilate information at specific points during their care, as discussed by Carol, the actual experience of health care may improve for patients. The difficulty in communication palliative patients have surrounding their care, has been observed (Jarrett et al., 2012). Carol’s experience of time was part of a complex context of care where participants faced a challenge in realizing the full implications,
72 and the level of choices available in consenting (or not) to proposed medical interventions. Palliative inpatients may simply not have time to weigh up the pros and cons of proposed treatments or interventions. To avoid iatrogenic distress, more research is needed to target timing and communication in clinical care, and in the processes of admission to palliative care. In “brief time,” participants were confronted with the potential loss of their body through death. Although physicians may not specifically use the word “dying” or “death,” participants become aware, in their admission to palliative care, that this may be the last stop on their journey as they travel symbolically into “brief time.” In her interview, Anne asked her physician urgently “how long will it take?” It is challenging to understand how “objective” or clock time feels when an individual’s future time is taken away through life limiting illness. Lived time has a modality of hope in a future, where a person’s health and life may get better. With a growing awareness on some level of the annihilation of temporality and one’s being, an individual moves into a particular temporal world. In this temporal world, people with a life limiting illness can encounter a profound distortion of how time is experienced and valued as death approaches (Chochinov, 2011). Indeed, moments of time become precious in the gravity of approaching death (Chochinov, 2011). This was evident in Ben’s description of his experience of “brief time” as a gift. Aspects of agency and autonomy can be found in patients at this point (Kaufman, 2005). Although faced with loss of the body in physical decline to death, Anne demonstrated agency and autonomy in prioritizing time to allocate precious gifts of clothing and belongings to family and friend in her social world. With a phenomenological lens, in waiting time, hope has been found to underlie the experience of waiting (Bollnow, 1989). Hope refers to a future expectation, with the exact occurrence of the hoped for event unknown. It lies at a vague moment in the future. A “temporal inertia” of hospice inpatients has been described elsewhere, where patients were reported as playing a “waiting game” with a lack a sense of future self (Lawton, 2000). Yet from this inquiry, the findings for example from Frank’s interview, suggest that regardless of feeling “worn down,” Frank knew from his prior experience that by waiting, his symptom of breathlessness would ease. In ‘waiting time’ he hoped to improve his present experience of distressing symptoms. Participants pointed to a time where relationships continue after death “like leaves fitting together.” In this transcendental horizon: future time: “one’s previous perception of life as stretching into a never-end-
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ing future, and a realization of the full meaning of finitude” (Leman-Stefanovic, 1987, p. 171) are part of the context of daily experience of care. Palliative patients in the context of daily care, experience vulnerability and dependency in a society avoidant of death (Chochinov, 2012). The findings reported here highlight the knowledge of the interviewed patient’s own perspective, a diagnosis of a life limiting illness and admission to inpatient palliative care is not only a physical experience of vulnerability, but is also an experience that is evaluated as part of a person’s meaning making. For patients time takes on numerous meanings in the context of inpatient palliative care. As time is part of the experience of end of life, then an implication for healthcare practice is to re-acknowledge the importance of time to the person diagnosed with a life limiting illness and provide sufficient resources — including time — to offer the opportunity for patients to engage in their “brief time” and communicate or experience what is uniquely of importance to them. The clinical implications of the findings point to the importance of offering care and support to reduce psychosocial distress in individuals diagnosed with a life limiting illness, in a delicate balance of past, present and future time priorities for the patient. It is hoped these findings will help support people with a life limiting illness to recognize the need for time to assimilate and process information. Healthcare professionals can assist palliative inpatients to take the time they need to ask questions or express any concerns they may have. Further research to consider interventions to provide patients an opportunity to debrief and review their admission to palliative care would be beneficial to prioritize the whole person care and psycho-social well-being of palliative patients.
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