Caring for critically ill patients with advanced COPD at the end of life: A qualitative study

Intensive and Critical Care Nursing (2008) 24, 162—170

ORIGINAL ARTICLE

Caring for critically ill patients with advanced COPD at the end of life: A qualitative study Donna Goodridge a,∗, Wendy Duggleby a,1, John Gjevre b,2, Donna Rennie a,3 a

College of Nursing, University of Saskatchewan, 107 Wiggins Road, Saskatoon, Saskatchewan, Canada S7T 5E5 b Division of Respiratory and Critical Care Medicine, Department of Medicine, University of Saskatchewan Royal University Hospital, 103 Hospital Drive, Saskatoon, Saskatchewan, Canada S7N 0W8 Accepted 12 January 2008

KEYWORDS End of life care; COPD; Chronic illness

Summary Providing expert critical care for the high acuity patient with a diagnosis of COPD at the end of life is both complex and challenging. The purpose of this descriptive study was to examine intensive care unit (ICU) clinicians’ perspectives on the obstacles to providing quality care for individuals with COPD who die within the critical care environment. Transcripts of three focus groups of ICU clinicians were analyzed using thematic analysis. The three themes of ‘‘managing difficult symptoms’’, ‘‘questioning the appropriateness of life-sustaining care’’ and ‘‘conflicting care priorities’’ were noted to be significant challenges in providing high quality end of life care to this population. Difficulties in palliating dyspnea and anxiety were associated with caregiver feelings of helplessness, empathy and fears about ‘‘killing the patient’’. A sense of futility, concerns about ‘‘torturing the patient’’ and questions about the patient/family’s understanding of treatment pervaded much of the discourse about caring for people with advanced COPD in the ICU. The need to prioritize care to the most unstable ICU patients meant that patients with COPD did not always receive the attention clinicians felt they should ideally have. Organizational support must be made available for critical care clinicians to effectively deal with these issues. © 2008 Elsevier Ltd. All rights reserved.

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Corresponding author. Tel.: +1 306 966 1478; fax: +1 306 966 6703. E-mail addresses: [email protected] (D. Goodridge), [email protected] (W. Duggleby),[email protected] (J. Gjevre), [email protected] (D. Rennie). 1 Tel.: +1 306 966 6237; fax: +1 306 966 6703. 2 Tel.: +1 306 966 8274; fax +1 306 966 8694. 3 Tel.: +1 306 966 6234; fax: +1 306 966 6703. 0964-3397/$ — see front matter © 2008 Elsevier Ltd. All rights reserved. doi:10.1016/j.iccn.2008.01.002

Patients with advanced COPD at the end of life For people with advanced chronic illness experiencing acute decompensation, the resources available in the intensive care unit (ICU) afford the possibility that they may be able to weather the present crisis and return to their previous state of health. Prognostication for those with advanced chronic illness is, at best, an art with multiple interacting variables playing a role in the person’s eventual recovery or death (Hansen-Flaschen, 2004; Murtagh et al., 2004). The unpredictability of the advanced disease trajectory, however, makes dying in the ICU a distinct possibility for many patients with advanced chronic illness who have been admitted to the critical care setting. Because of these uncertainties, quality end of life (EOL) care is increasingly recognized as a key component of critical care nursing practice (Beckstrand and Kirchhoff, 2005; Campbell, 2002; Larson et al., 2006; Mularski and Osborne, 2003). The disease trajectory of chronic obstructive pulmonary disease (COPD), the only leading cause of death that still has a rising mortality rate (Booker, 2003; Hurd, 2000), is often marked by acute exacerbations and decompensation that require ICU intervention (Hansen-Flaschen, 2004). Providing expert critical care for the high acuity patient with a diagnosis of COPD at the EOL is both complex and challenging. While critical care nurses are committed to addressing the high levels of both physical and psychosocial needs that characterize the critically ill COPD patient in ways that are respectful of personhood, dignity and bodily integrity (Seymour, 2001), there has been little research examining nurses’ experiences in providing EOL care to this group of patients. The purpose of this descriptive study was to examine intensive care unit (ICU) clinicians’ perspectives on the challenges of providing quality EOL care for individuals with COPD who die within the critical care environment. As part of a larger concurrent descriptive mixed method project, this paper will present the qualitative findings emerging from focus group interviews with critical care nurses and respiratory therapists.

Background Critical care nurses have raised important concerns about the quality of care for individuals dying in the technology-rich, fast-paced setting of the ICU. Inadequate terminal symptom management has been identified as a quality concern (Connors et al., 1995; Puntillo et al., 2001), as has prolongation of the dying process in the ICU through the use of overly aggressive treatment (Asch et

163 al., 1997; Simmonds, 1996; Solomon et al., 1993). The need for improved communication in relation to EOL decision making between patients, families and critical care providers has been highlighted as a major quality concern (Boyle et al., 2005; Carlet et al., 2004; Curtis, 2004; Norton and Talerico, 2000; Norton and Bowers, 2001; Studdert et al., 2003; Lilly et al., 2000), particularly in view of the fact that 90% of patients who die in ICU do so after a decision to limit treatment (Prendergast and Luce, 1997). Emotional and organizational supports for staff are well-recognized as a key component of ensuring the delivery of quality care for those who are dying. Unfortunately, grief counseling and debriefing were reported to rarely or never occur in the work setting by 87% of ICU nurses (Puntillo et al., 2001), despite evidence that nurses experience profound dissonance between the ‘‘rescue culture’’ of the critical care setting and the desire to facilitate a good death (Asch et al., 1997; Kirchhoff et al., 2000; Simmonds, 1996). Critical care clinicians care deeply about facilitating high-quality dying (Seymour, 2001). Nurses reported that quality EOL care in the ICU was complicated by disagreements among family members or among clinicians, uncertainty about prognosis and communication problems between physicians and between physicians and family members (Kirchhoff et al., 2000). The biggest obstacles to appropriate EOL care in the ICU identified in Beckstrand and Kirchhoff’s (2005) survey were: behaviors of patients’ families that removed nurses from caring for patient, behaviors that prolonged patient suffering or caused pain and physicians’ disagreement about the plan of care. Although non-invasive mechanical ventilation has emerged as a treatment option for some patients with advanced respiratory disease, invasive mechanical ventilation is still required by 15—26% of people with COPD who suffer acute ventilatory failure (Plant et al., 2000; Quinnell et al., 2006). Emerging evidence suggests that the needs of individuals with COPD who are admitted to an intensive care unit (ICU) may differ in significant ways from other critically ill patients. The care of patients with advanced COPD in the ICU may be influenced by a constellation of factors associated with this condition. Longer than average lengths of ICU stay (Groenewegen et al., 2003; Gruenberg et al., 2006; Wong et al., 1999), multiple previous ICU admissions (Wong et al., 1999), increased risk for ICU syndrome (Jones et al., 2000; McGuire et al., 2000) and potentially prolonged mechanical ventilation and difficult weaning (MacIntyre et al., 2005) are some of the issues that may affect the manner

164 in which EOL nursing care is provided to individuals with advanced COPD. Nursing care of patients with COPD may also be influenced by the nurses’ questions about the futility of treatment (Seymour, 2001) given the high risk of mortality (Groenewegen et al., 2003; Nevins and Epstein, 2001; Seneff et al., 1995; Quinnell et al., 2006) in this population and a reduced probability of having the patient with COPD survive to experience a high quality of life (Hurel et al., 1997). The depression, anxiety and altered coping strategies which may result from an individual having lived for typically many years with a chronic debilitating disease such as COPD may also affect the nurse—patient relationship and impact on the quality of EOL care (Bailey et al., 2004). COPD patients were characterized by nurses in this study as ‘very anxious’, ‘demanding’ and or ‘complaining patients who set the rules’. Nurses appeared to stigmatize individuals with COPD and their families as being anxious people. This stigmatization may further complicate the end of life care of COPD Patients. However, the experience of caring for COPD patients in ICU’s is not clearly understood. A clearer understanding would assist acute care facilities in developing supportive programs for ICU staff, the patients and families at the end of life.

Method Design Ethical approval was given by the researcher’s affiliated university Behavioral Research Ethics Board and the local Health Region. A qualitative focus group design with three groups of staff was used to describe the experiences of critical care nurses and respiratory therapists (RTs) in providing EOL care to patients with COPD dying in the ICU. Each focus group met once and a follow-up interview was conducted with one volunteer from each group to validate the themes emerging from the focus group. The interview schedule for the focus groups followed the guidelines recommended by Krueger (1994), with an opening/introductory question, transition questions, key question and an ending question. The focus group moderator was a Master’s prepared registered nurse with experience in a wide range of clinical settings. Field notes describing the participants’ speech, action and nonverbal behaviors were recorded by one of the researchers (DG) at two of the focus groups and by a trained registered nurse at the third session. The interview data from these groups was sufficiently rich and

D. Goodridge et al. comprehensive to ensure that an in-depth description and interpretation was achieved.

Setting The three ICUs were comparable in size, ranging from 10 to 12 beds, although the number of admissions ranged from 350 to 800 per year and overall mortality rates varied from 9.5% to 21.2%. Of the 1600 admissions to these ICU units in 2005, approximately 240 patients were admitted with a diagnosis of COPD and invasive mechanical ventilation was required by about 100 patients. The nurses and respiratory therapists on these units have significant experience caring for patients with advanced COPD. While data on the number of patients with advanced COPD who died in these settings is not available, preliminary discussions with staff confirmed that caring for dying patients with advanced COPD in the ICU represented a noteworthy component of their practice.

Participants All bedside nurses, respiratory therapists, physiotherapists and physicians practicing in the three ICUs in one Canadian city received personal letters of invitation to volunteer for the focus groups. A monetary honorarium ($CAN50) was offered to compensate for the personal time spent participating in the focus group. To maintain homogeneity within the focus groups, each focus group was comprised of staff from a single ICU.

Data analysis Transcripts were checked for accuracy against the recordings. All transcripts were read by the research team members individually and then collectively. Qualitative data were stored and managed using N6 software. The analysis of focus group data focused on the individual and group levels. The data (transcripts and field notes) for each focus group were analyzed separately. Using thematic analysis techniques, main points and topics were identified, along with the themes that best illustrated the main points and topics. The analysis focused on challenges that participants perceived as unique to, or especially pervasive in, caring for people with COPD in the ICU.

Rigor Rigor and trustworthiness of the study process and its findings were demonstrated by maintaining a

Patients with advanced COPD at the end of life clear audit trail, taking preliminary findings back to a volunteer from each focus group for discussion and confirmation of interpretations (Patton, 2002). In order to assure trustworthiness of the data, all audio-taped focus groups, individual interviews and field notes were transcribed verbatim. Transcripts were reviewed and corrected by a review of the audiotapes by the PI and research assistant. Themes using the language of the participants were used as much as possible. The PI and CIs reviewed the transcripts separately and then met to finalize coding. Auditability was ensured by retaining raw data, field notes, memos and the three follow-up individual interviews, thereby providing an audit trail.

Results Seventeen ICU clinicians participated in the focus groups, a total which included 15 registered nurses and two respiratory therapists. While 21 staff members had originally committed to participate, four were unable to attend due to last minute personal conflicts in scheduling (including being called in to work an over-time shift). All participants were employed at least half time in one of the three ICUs. The mean age of the participants was 42.3 years, with a range from 27 to 57 years. Participants had a mean overall nursing experience of 19.6 years with a range of 5—36 years, with a mean ICU experience of 12.3 years (range 1—21 years). Five participants were male. Focus group sizes were four, six and seven participants. The focus groups lasted from 55 to 75 min and were tape-recorded and transcribed.

Themes Participants in all three focus groups described situations of patients with COPD who had died in the ICU, with some patients being mechanically ventilated until death and others managed intensively without mechanical ventilation. There was agreement that many of the issues at EOL for ventilated and non-ventilated patients were similar in significant ways. The three themes of ‘‘managing difficult symptoms’’, ‘‘questioning the appropriateness of life-sustaining care’’ and ‘‘establishing care priorities’’ were noted as significant challenges in providing high quality EOL care to people with COPD in the ICU.

Managing difficult symptoms Achieving adequate management of the difficult symptoms experienced by people with COPD was

165 generally considered a challenge in providing excellent EOL care in the ICU. Dyspnea was the symptom most characteristic of COPD patients at the EOL and one which proved intractable, at times, for the participants to manage effectively. The patient’s struggle to breathe was difficult for participants to watch and engendered a sense of helplessness in some participants. ‘‘Fighting’’ discourse was often used to characterize the terminal trajectory of ICU patients dying with COPD. These individuals were often described as ‘‘struggling’’ or ‘‘battling’’. Participants were empathetic to this struggle.

Managing difficult symptoms Dyspnea P1: I think that COPD death is so awful. When you’re fighting for every little breath that you take and you just feel like you are suffocating all the time—–I can just imagine dying like that. P2: Struggle, that struggle to breathe, I guess. P1: You can’t breathe. It’s like you’re drowning.

Anxiety P1: Cause we’ve often said, and I felt very strongly, if you could just somehow hypnotize them, they would not be so anxious. . .There’s such a huge anxiety component to it and they all have it. P3: . . .all of them. P4: . . .like if I could ever magically do that, take away their anxiety. . . P3: . . .it would so much improve their lives.

In addition to dyspnea, anxiety was another symptom that nurses felt they could not always manage to the extent they might have wished. Anxiety was inextricably linked to the experience of dyspnea and was depicted as a principal characteristic of patients with COPD who were dying in the ICU. In the following excerpt, the template of the patient with COPD as highly anxious clearly emerges, with the first speaker describing the pervasive nature of anxiety in patients with COPD and the others affirming her statement. The difficulty the participants experienced in allaying this anxiety through conventional interventions is communicated through the references to hypnotism and magic.

166 In addition to the helplessness felt by clinicians when management attempts were not successful, participants described the precarious nature of attempting to effectively manage the COPD patient’s dyspnea and anxiety without administering a dosage of medication that would ‘‘kill the patient’’. Participants drew on their professional knowledge, skill and previous experience when trying to assess the potential outcomes of their interventions. They recognized, however, the limitations in their own ability to predict whether a particular dosage of sedation would suppress breathing to the point where the patient died and thus described how they were placed in an ethically precarious situation. The interaction between participants, particularly in regards to this issue, was supportive and served to normalize this very challenging situation. P5: If I give them this, am I going to kill them? Is the morphine going to kill him? Or is it just going to ease his suffering? P6: I guess when I think of it, COPD end stage on a ventilator, and they are just fighting. You have to keep them sedated to the point where they’re unaware. . .It’s just a terribly awful thing to watch. P7: And I think another part of that, too, is when they’re not ventilated, and on bipap, and that again is an incredible struggle. And at that point, when you’re administering sedation pain medication, there’s that area, how much do you give? P6: They need a lot to suppress that awful panic, but yet I think it’s a very fine line between suppressing the panic and suppressing their breathing at all.

Questioning the appropriateness of admission to the ICU Participants found themselves questioning the appropriateness of the life-sustaining care being provided in the ICU for people with advanced COPD and felt this compromised their ability to provide quality EOL care. Participants’ concerns about the futility of aggressive, life-sustaining treatment were typically grounded in their own previous experiences of providing treatment that they believed did not ultimately benefit the patient. Observations on futility and the ethical dilemmas associated with providing care that was perceived as having no benefit to the patient pervaded much of the participants’ discourse about caring for people with advanced COPD in the ICU. Several

D. Goodridge et al. participants expressed concern that they were ‘‘torturing’’ the COPD patient by prolonging their death. Clear expressions of doubt surfaced as participants explored feelings of complicity about their own roles in prolonging the suffering of the person with COPD.

Theme: Questioning the appropriateness of admission to the ICU Feelings of complicity in prolonging suffering P1: . . .there’s lot of times that I see where we are all, we’re all standing around thinking ‘‘Oh my God, I can’t believe we’re going to intubate this patient. I can’t believe we’re going to do this.’’ And, sure enough, a few months down the road, they die a horrible death on the ventilator in ICU. . .I can’t believe we are going to do this’’. P5: And that’s where it becomes hard on our part, because you know, pretty well, what’s coming, and we’re just simply prolonging [death], and at times feel that you’re being abusive. P4: A lot of them, there’s not really a lot that you can offer them because they’re so limited and they have no reserve, the slightest effort puts them over the edge, like sedating them.

Participants questioned whether the care they were providing reflected the actual wishes of the patient and looked for peer support from their colleagues. In addition, there were concerns expressed about the alignment of care with the patient’s and family’s treatment preferences. An additional frustration to providing quality end-of-life care identified by participants was that some patients with advanced COPD and their families failed to recognize the life-limiting and grave nature of this disease, leading them to actively seek or consent to the aggressive, curative care offered in the ICU setting. The shared assumption that appropriate advance care planning would have pre-empted the admission to the ICU was clear from the transcripts. Participants highlighted the lack of advance care planning with this population as a major concern. The importance of discussing treatment options and clarifying wishes prior to an acute

Patients with advanced COPD at the end of life

Theme: Questioning the appropriateness of admission to the ICU Alignment of care with patient and family preferences P10: It’s, it’s easy to put these people on a ventilator. P13: The trick is getting them off. P10: And sometimes with most end-stage COPD you can’t. P13: They will die in the ICU on a ventilator. P10: Trached. And a lot of times I wonder, and I’m sure you guys do, too, whether this is really what they want. P11: Whether they had a real clear understanding of this. Is where they are and really, do they want, do they want to be here? P10: Do you want to be trached and ventilated? Stuck in the room in bed. P13: It’s really, I think about quality of life and quality of death.

medical crisis was uniformly considered to an excellent strategy for improving the EOL care of COPD patients. There was little overt acknowledgement by participants that some patients may have chosen aggressive treatment in spite of having been educated about their poor prognosis, although one participant described some ICU patients with advanced COPD as ‘‘frequent fliers’’ because their history of multiple admissions. Responsibility for the decision to seek aggressive treatment was typically deflected away from the patients, as participants suggested that people with COPD failed to receive sufficient education from physicians about the course of their disease while their health status was stable and thus held unrealistic expectations about their chances for recovery from an acute crisis. The following excerpt illustrates how participants from one ICU built consensus on and shared these perspectives. P16: ‘Cause really a lot of end stage COPD people are really palliative. P17: And they should be cared for palliatively. P15: And I don’t think they realize that. . . P16: . . .a lot of families don’t realize that this is a terminal illness. P17: They think that it’s just, well, it’s just their lungs and, you know, they can go on a venti-

167 lator or respirator for a little while and then come off and they’ll be home. . . P15: And they’ll be OK. P17: . . .and it’s a terminal end-stage disease and a lot of families and patients aren’t educated. P16: They don’t understand that.

Conflicting care priorities Closely linked to the theme of ‘‘appropriateness of admission to the ICU’’ was the theme of ‘‘conflicting care priorities’’. The need to establish care priorities according to mandate of the critical care setting was seen as a barrier to providing EOL care to people with COPD. The type of care required by many people with advanced COPD was seen by participants as different in nature from that required by other critically ill patients. In spite of being mechanically ventilated and thus meeting one requirement for admission to the ICU, these patients were often relatively stable physiologically. Participants described intense frustration with having to care for stable patients who experienced what was viewed as primarily a high level of emotional need, as opposed to physical need. Each of the focus groups noted the need for an alternate setting of care designed to effectively manage both the ventilatory needs and the psychosocial needs of patients. The noisy, high stimulation, crowded physical environment of the ICU was repeatedly noted to be a barrier to clinicians’ efforts to ensure a peaceful death. Anxiety surfaced again as a defining characteristic of the participants’ template of the person with COPD. This frustration, however, was tempered by guilt that the patients with COPD were also frustrated and not necessarily receiving the care the participants would have like to have been providing. While there was guilt over what was perceived as relative neglect of the COPD patient, participants engaged in rationalizing and normalizing that psychosocial care was not the most critical priority in the ICU environment. It seemed important to participants to convey that they were kind, caring and professional nurses who managed a heavy workload as best they could. Anxiety, guilt and distress of the nurses and respiratory therapists in their inability to provide end of life care were hallmarks of the focus group discussions.

Discussion In this exploratory study, focus groups of nurses and respiratory therapists working in three critical care settings described some of the challenges to

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Theme: Managing conflicting care priorities P2: And if you’ve got another patient that you’re running drugs that make their pressure go up and down, you kind of have to be there for that. You can’t just, you know, and so if the, the COPD’er rings, you just kind of holler up, ‘‘well, just wait a while’’. . . P4: But it’s still important to them. They’ve been left. . . P2: And you get a report or you overhear. . . ‘‘I hardly saw them today’’. P4: And you can almost hear the guilt in their voice. P3: And it’s definitely a guilt.

providing EOL care to people with advanced COPD who were dying in the ICU. The three themes of ‘‘managing difficult symptoms’’, ‘‘questioning the appropriateness of life-sustaining care’’ and ‘‘conflicting care priorities’’ were noted to be significant challenges. While nurses may also experience these issues during more routine admissions for acute exacerbations, each of the themes took on additional urgency and poignancy when caring for a patient with COPD who was clearly dying. Staff struggled to reconcile their desire to facilitate a peaceful death with the realities of the critical care setting. Dyspnea and anxiety were clearly the symptoms participants associated most often with patients dying with COPD in the ICU. The symbolism of battle was repeatedly and independently used in all three focus groups. While it is clear from the literature that most patients undergoing mechanical ventilation experience stress, anxiety and uncertainty while they are ventilated and during the weaning process (Bergbom-Engberg and Haljamae, 1989; Gries and Fernsler, 1988; Hupcey, 2000; Johnson et al., 2006; Nelson et al., 2004; Todres et al., 2000), patients with a diagnosis of underlying pulmonary disease have been found to experience far more of these anxious feelings than patients without this diagnosis (Wunderlich et al., 1999). This ‘‘higher than usual’’ level of anxiety was reflected in participants’ template of terminally ill patients with COPD. As in Bailey and colleagues’ (2004) study, these critical care clinicians appear to have developed a ‘‘template’’ of the patient with COPD. The patient with COPD in the ICU was uniformly characterized by participants as an individual with high levels of

D. Goodridge et al. anxiety who was stable except for requiring ventilatory support. This unique presentation led to situations where the clinician had to prioritize the care of the person with COPD as less urgent than the care of other patients, resulting in less attention to the person with COPD. This may be an example of ‘‘balancing’’, in which ICU nurses had to simultaneously manage the paradoxical relationship between the technology of the intensive care unit and the processes of care (Walters, 1995). Questions about the appropriateness of ICU admission of the person with advanced COPD were raised repeatedly and from different perspectives. There was support among all of the participants for the development of alternate settings for EOL care for people with COPD. Ethical considerations were central to the discussion of end-of-life care for people dying with COPD in the ICU. Participants often felt hampered in their ability to provide EOL care to patients dying with COPD by their own questions about the futility of treatment and whether the aggressive treatment in the ICU was, in fact, aligned with the patient’s own preferences. In concordance with the findings of Beckstrand and Kirchhoff (2005) and Badger (2005), the failure of family decision-makers to recognize the life-limiting nature of the illness was identified as a challenge to providing excellent EOL care to this group. Primary obstacles to appropriate EOL care in the ICU identified in Beckstrand and Kirchhoff’s survey (2005) were behaviors of patients’ families that removed nurses from caring for patient, behaviors that prolonged patient suffering or caused pain and physicians’ disagreement about the plan of care. Participants in these focus groups did not discuss any family behaviors that removed the nurses from care of the patient, but did describe how they often had to ignore the patient with COPD who was stable in order to attend to the needs of another patient in acute crisis. This type of priority setting may reflect, to some extent, the clinician’s time constraint identified in Beckstrand and Kirchhoff’s (2005) study examining barriers to EOL care in the ICU. A somewhat different interpretation suggests that the low prioritization of patients with COPD may be the result of the mismatch between the care needs of people with advanced COPD at the EOL and the rescue mandate of the ICU. Participants voiced significant concerns about the challenges of determining the dosage of medication sufficient to effectively manage dyspnea and anxiety, but which did not suppress breathing. The principle of ‘‘double effect’’ is widely used in palliative care settings to permit the administration of narcotics and sedatives with the intent to pal-

Patients with advanced COPD at the end of life liate dying patients (Hawryluck and Harvey, 2000; Hawryluck et al., 2002, even though the administration of these drugs may cause hastening of death. The Ethics Committee of the Society of Critical Care Medicine (Truog et al., 2001) highlights the importance placed on the intentions of clinicians in administering analgesics and sedatives at the EOL. These authors note that clinicians should administer doses that are intended to relieve pain and suffering but not intended to directly cause death, with the documentation of these intentions in the health record critical to conveying intent. It is important that ICU clinicians have the opportunity to discuss these difficult situations with co-workers and supervisors in a supportive setting to alleviate the guilt and misgivings that often accompany the attempt to manage difficult symptoms. This type of emotional and organization support would help to address this domain of quality of ICU care (Clarke et al., 2003).

Limitations of the study In view of the increasing recognition of the need to enhance our knowledge of providing EOL care to people with chronic illnesses, this exploratory study sought to bring to light challenges in providing care to patients dying with COPD in the ICU. A qualitative approach was selected as there is a dearth of research in this particular area, although this approach precludes generalization to other settings. The findings may reflect the particular culture and idiosyncrasies of each ICU setting, although they lay the foundation for future research in this area. This study is limited by the relatively small number of participants as well as including ICUs from a single city. However, credibility in a qualitative study is determined more by the richness of data than by sample size. The discussion relied on participants’ recollections of caring for individuals dying with COPD in the ICU setting. These recollections may have been altered over time, although each focus group demonstrated a unified, collective memory of the individual cases discussed.

Conclusion By specifically examining clinicians’ perspectives on caring for people with COPD in the ICU at the end of life, a number of new insights have been generated through this exploratory study. The findings presented in this article provide a rich description and interpretation of critical care clinicians’ experience of caring for people dying with COPD in the

169 ICU setting. These findings increase knowledge and understanding of what it is like to care for this unique population of chronically ill patients, reveal new insights into some of the challenges of providing quality care and provide direction for areas where additional staff support is needed. This study also revealed a number of areas that warrant further research. In particular, further exploration of ICU clinicians’ template of the COPD patient and its’ effect on care provision would shed new light on factors that influence care quality. Prospective studies that follow the patient with advanced COPD through the ICU admission until death would allow for the collection of additional data and perhaps allow for examination of possible influences such as the mode of mechanical ventilation. These additional studies could also explore the experience of significant others, another area of research that is sorely lacking. Because much of the literature on EOL care has been conducted with cancer patients, knowledge relating to EOL care for patients with chronic illnesses such as COPD is still in its infancy. Extending the examination of challenges in providing EOL care to other settings such as medical units and the home environment would allow us to generate important knowledge about optimizing EOL care for this group of patients whose numbers are expected to grow significantly in the coming years.

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