Palliative Care for Relapsed Allogeneic Stem Cell Recipients
Palliative Care for Relapsed Allogeneic Stem Cell Recipients
The issues associated with palliative care integration in the broader hematology setting have been well documented (Howell et al., 2010). Because of the unique nature and specific needs of recipients of alloHSCT who relapsed, a literature search was conducted focusing explicitly on this population. A systematic literature search of the following electronic databases was conducted: CINAHL® (1993–2012), MEDLINE® (1950–2012), PsycINFO (1872–2012), and the Cochrane Library (1999–2012). The search used the following MeSH terms: allogeneic hematopoietic stem cell transplantation, relapse/recurrence/disease progression, and palliative care. The term palliative care was substituted with holistic care, psychosocial care, emotional care, spiritual care, quality-of-life, total pain, family nursing/centered, EOL care, and terminal care to enhance search findings. The search returned 309 articles, which were sorted by hand. The inclusion criterion was articles regarding the palliative or holistic care of recipients of alloHSCT who relapsed. This search revealed three relevant articles: a case study, a conceptual framework, and a personal recollection.
Cooke et al. (2011) presented a prospective study of evidence-based palliative care education session for patients who had relapsed following alloHSCT. Two advanced practice nurses (APNs) delivered an education intervention to address the lack of palliative care and EOL education and evaluated the impact of this intervention through observations presented in four case studies. APN is an umbrella term for various types of nurses who work in advanced roles with extended practice, including nurse practitioners and clinical nurse specialists (Schober & Affara, 2006). Cooke et al. (2011) highlighted the valuable role APNs can play in addressing the issue of palliative care integration for recipients of alloHSCT who relapsed. Their study also highlighted the value of patient and family education, the unique nature of patients in fluctuating levels of health, the cure-focused nature of current education interventions, and the benefits associated with palliative care integration. Interestingly, Cooke et al. (2011) alluded to patients' reluctance to accept palliative care integration. Patients in two of the four case studies refused to discuss palliative care or acknowledge they were dying. Three of the case studies reported that patients died in the acute care setting, with two of these patients dying in the intensive care unit—one being ventilated. The study also highlighted the need for advanced care planning for high-risk patients to avoid futile treatment and deaths in inappropriate environments (Cooke et al., 2011). Although these practices conflict with the principles of palliative care, these scenarios may highlight reluctance from patients in integrating palliative care and discussing advance care planning. The article described a practical and evidence-based education intervention, but it has limited value as research because of methodologic weakness; the number of patients who received this intervention is unclear, and outcomes were measured via case study reports.
Yoon, Conway, and McMillan (2006) wrote a retrospective concept analysis of patient education that aimed to propose a framework for the development of palliative education programs for recipients of alloHSCT who relapsed and their families in Korea. The authors stated the concept analysis was based on an extensive review of the literature, but the search strategy was not discussed. The methodology of the concept analysis was implemented as explained and patient education was analyzed; however, this did not translate to a clear framework on developing education sessions, with no meaningful discussion of palliative care for recipients of alloHSCT who relapsed and their families. Yoon et al. (2006) did, however, discuss the benefits of patient education, the focus on cure, and the existence of under-recognized palliative needs, and called for a multidisciplinary approach to patient education for recipients of alloHSCT who relapsed and their families. The authors articulated that a change in health care from a "traditional hierarchical organization" to a team-oriented approach places the responsibility to educate patients on healthcare professionals from many disciplines (Yoon et al., 2006, p. 134).
Lister (2001), a practicing psychiatrist, presented a retrospective autoethnographic case study that described her personal perspective of her daughter's experience with acute lymphoblastic leukemia and death following relapse after alloHSCT. The personal recollection expressed the collective family experience and outlined positive and negative aspects of the care the family received (Lister, 2001). In evaluating the usefulness of this article as research, the current authors acknowledge that autoethnography challenges the traditional scientific methodology and validity (Ellis, 2004). Although Lister's account is personal, subjective, and one-sided, her reflection contributes to the understanding of the family and patient's social and personal lives through lived experience. Issues revealed in this article included the positives associated with palliative care integration and referral to SPCS, the cure-focused nature of the specialty area, and the unique nature of recipients of alloHSCT in fluctuating levels of health. Lister (2001) said that patients and families truly appreciate clinicians who show they care and tell the truth, noting, "It really matters that physicians be able to face what patients have to face" (Lister, 2001, p. 246). The notion of valuing truth-telling in this account sits in opposition to the case studies described by Yoon et al. (2001) and warrants additional exploration. Although this case study is the story of one family, it provides valuable insight and highlights important messages and themes.
As discussed, the key themes identified in the three articles included the cure-focused nature of the specialty; the importance of patient education; the unique nature of recipients of alloHSCT in their disease trajectory (fluctuating levels of health and potential to deteriorate rapidly); the benefits of palliative care; and roles of the multidisciplinary team, specifically the value of APN roles in integrating palliative care. These themes shed some light on the issue and highlight areas for future research, such as the role of APNs in integrating palliative care and the reluctance of recipients of alloHSCT who relapsed to accept palliative care integration. The paucity of literature regarding palliative care for recipients of alloHSCT who relapsed presented evidence that was low-level, anecdotal, or qualitative and, although useful in some respects, carries limited value as evidence. As a result of the limited amount of evidence found in the literature review, the broader hematology palliative care literature will be referred to throughout the current article when appropriate and relevant.
The current authors' study was conducted to generate knowledge regarding palliative and EOL care provision for recipients of alloHSCT who relapsed through a two-armed approach—a retrospective chart review and a national survey.
Literature Review
The issues associated with palliative care integration in the broader hematology setting have been well documented (Howell et al., 2010). Because of the unique nature and specific needs of recipients of alloHSCT who relapsed, a literature search was conducted focusing explicitly on this population. A systematic literature search of the following electronic databases was conducted: CINAHL® (1993–2012), MEDLINE® (1950–2012), PsycINFO (1872–2012), and the Cochrane Library (1999–2012). The search used the following MeSH terms: allogeneic hematopoietic stem cell transplantation, relapse/recurrence/disease progression, and palliative care. The term palliative care was substituted with holistic care, psychosocial care, emotional care, spiritual care, quality-of-life, total pain, family nursing/centered, EOL care, and terminal care to enhance search findings. The search returned 309 articles, which were sorted by hand. The inclusion criterion was articles regarding the palliative or holistic care of recipients of alloHSCT who relapsed. This search revealed three relevant articles: a case study, a conceptual framework, and a personal recollection.
Cooke et al. (2011) presented a prospective study of evidence-based palliative care education session for patients who had relapsed following alloHSCT. Two advanced practice nurses (APNs) delivered an education intervention to address the lack of palliative care and EOL education and evaluated the impact of this intervention through observations presented in four case studies. APN is an umbrella term for various types of nurses who work in advanced roles with extended practice, including nurse practitioners and clinical nurse specialists (Schober & Affara, 2006). Cooke et al. (2011) highlighted the valuable role APNs can play in addressing the issue of palliative care integration for recipients of alloHSCT who relapsed. Their study also highlighted the value of patient and family education, the unique nature of patients in fluctuating levels of health, the cure-focused nature of current education interventions, and the benefits associated with palliative care integration. Interestingly, Cooke et al. (2011) alluded to patients' reluctance to accept palliative care integration. Patients in two of the four case studies refused to discuss palliative care or acknowledge they were dying. Three of the case studies reported that patients died in the acute care setting, with two of these patients dying in the intensive care unit—one being ventilated. The study also highlighted the need for advanced care planning for high-risk patients to avoid futile treatment and deaths in inappropriate environments (Cooke et al., 2011). Although these practices conflict with the principles of palliative care, these scenarios may highlight reluctance from patients in integrating palliative care and discussing advance care planning. The article described a practical and evidence-based education intervention, but it has limited value as research because of methodologic weakness; the number of patients who received this intervention is unclear, and outcomes were measured via case study reports.
Yoon, Conway, and McMillan (2006) wrote a retrospective concept analysis of patient education that aimed to propose a framework for the development of palliative education programs for recipients of alloHSCT who relapsed and their families in Korea. The authors stated the concept analysis was based on an extensive review of the literature, but the search strategy was not discussed. The methodology of the concept analysis was implemented as explained and patient education was analyzed; however, this did not translate to a clear framework on developing education sessions, with no meaningful discussion of palliative care for recipients of alloHSCT who relapsed and their families. Yoon et al. (2006) did, however, discuss the benefits of patient education, the focus on cure, and the existence of under-recognized palliative needs, and called for a multidisciplinary approach to patient education for recipients of alloHSCT who relapsed and their families. The authors articulated that a change in health care from a "traditional hierarchical organization" to a team-oriented approach places the responsibility to educate patients on healthcare professionals from many disciplines (Yoon et al., 2006, p. 134).
Lister (2001), a practicing psychiatrist, presented a retrospective autoethnographic case study that described her personal perspective of her daughter's experience with acute lymphoblastic leukemia and death following relapse after alloHSCT. The personal recollection expressed the collective family experience and outlined positive and negative aspects of the care the family received (Lister, 2001). In evaluating the usefulness of this article as research, the current authors acknowledge that autoethnography challenges the traditional scientific methodology and validity (Ellis, 2004). Although Lister's account is personal, subjective, and one-sided, her reflection contributes to the understanding of the family and patient's social and personal lives through lived experience. Issues revealed in this article included the positives associated with palliative care integration and referral to SPCS, the cure-focused nature of the specialty area, and the unique nature of recipients of alloHSCT in fluctuating levels of health. Lister (2001) said that patients and families truly appreciate clinicians who show they care and tell the truth, noting, "It really matters that physicians be able to face what patients have to face" (Lister, 2001, p. 246). The notion of valuing truth-telling in this account sits in opposition to the case studies described by Yoon et al. (2001) and warrants additional exploration. Although this case study is the story of one family, it provides valuable insight and highlights important messages and themes.
As discussed, the key themes identified in the three articles included the cure-focused nature of the specialty; the importance of patient education; the unique nature of recipients of alloHSCT in their disease trajectory (fluctuating levels of health and potential to deteriorate rapidly); the benefits of palliative care; and roles of the multidisciplinary team, specifically the value of APN roles in integrating palliative care. These themes shed some light on the issue and highlight areas for future research, such as the role of APNs in integrating palliative care and the reluctance of recipients of alloHSCT who relapsed to accept palliative care integration. The paucity of literature regarding palliative care for recipients of alloHSCT who relapsed presented evidence that was low-level, anecdotal, or qualitative and, although useful in some respects, carries limited value as evidence. As a result of the limited amount of evidence found in the literature review, the broader hematology palliative care literature will be referred to throughout the current article when appropriate and relevant.
The current authors' study was conducted to generate knowledge regarding palliative and EOL care provision for recipients of alloHSCT who relapsed through a two-armed approach—a retrospective chart review and a national survey.
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