Providing Palliative Care to Family Caregivers Throughout the Bone Marrow Transplantation Trajectory

Research and Practice: Partners in Care

Kimberly Chow, RN, OCN Nessa Coyle, PhD, ACHPN, FAAN

In the bone marrow transplant population, both patients and their families have significant palliative care needs but tend to be underserved by palliative care. The focus of care is curative, and referrals to the palliative care team come late if at all. Symptom burden can be great, and family caregiver burden overwhelming. Many patients will develop acute and/or chronic complications associated with the transplant, some resulting in death. In addition, bone marrow transplant patients are being discharged home while still requiring a significant amount of both physical and psychological care. Family caregivers are expected to provide much of this care often with little support. The result may be fatigue and physical exhaustion, sleeplessness, deterioration in health, and social isolation. In both palliative and hospice care, the patient and family are approached as a single unit, recognizing the strengths and addressing the needs of both parties to affect the overall well-being of the family unit. This article discusses caregiver burden in the bone marrow transplant population throughout the disease trajectory illustrated through the use of a case example. An approach to address the palliative care needs of the family caregiver is outlined.

INTRODUCTION TO BONE MARROW TRANSPLANTA SEGUE TO UNDERSTANDING FAMILY BURDEN

An estimated 40,000 bone marrow transplants (BMTs) are performed worldwide per year.1 Bone marrow transplantation is the process of using hematopoietic stem cells to treat both malignant and nonmalignant disorders including leukemia, lymphoma, multiple myeloma, and sickle cell anemia. Patients can receive either autologous stem cells (AutoBMT), which have been collected directly from the patient, or allogeneic stem cells (AlloBMT) from a matched donor. 2 The International Bone Marrow Transplant Registry 3 reviewed 11,347 patients transplanted in North America between 1995 and 1997 in 101 different institutions. More AutoBMTs (66%) were performed than AlloBMTs (34%), with the most commonly treated malignancies listed in Table 1.3 While transplant has become known as a standard treatment for some of these diseases, its efcacy has been limited because of the many short- and long-term complications. These are associated with radiation therapy, myeloablative chemotherapy, actual stem cell transplantation, and prophylactic medication regimens for periods well past the transplant phase.2 Within the last 30 years, survival rates among patients receiving BMT have been steadily improving.4 Diseasefree survival is related to a number of variables such as type of disease, disease burden, type of transplant, patient demographics, pretransplant regimen, performance status, comorbid conditions prior to transplant, and level of care after transplant. More specic to AlloBMT is the donor source and degree of human lymphoctye antigen compatibility.5 Because of these many factors, generalization of overall survival and prognosis in BMT is difcult. Younger patients with less advanced disease demonstrate the most optimistic prognosis and can have survival rates greater than or equal to 60%, depending on the diagnosis, while those with more advanced disease have less favorable outcomes.3
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KEY WORDS
bone marrow transplant, caregiver burden, hospice care, palliative care

Kimberly Chow, RN, OCN, is Clinical Nurse II, Department of Medicine, Pain and Palliative Care Service, Memorial Sloan Kettering Cancer Center, New York, NY. Nessa Coyle, PhD, ACHPN, FAAN, is Nurse Practitioner, Department of Medicine, Pain and Palliative Care Service, Memorial Sloan Kettering Cancer Center, New York, NY. Address correspondence to Kimberly Chow, RN, OCN, 1275 York Ave, New York, NY 10065 (chowk@mskcc.org). The authors declare no conflict of interest. DOI: 10.1097/NJH.0b013e3181fce813

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TABLE 1 Common Malignancies Treated

With BMT3

Autologous BMT Breast cancer Non-Hodgkin lymphoma Multiple myeloma Allogeneic BMT Acute myelogenous leukemia Chronic myelogenous leukemia Acute lymphoblastic leukemia

66% 44% 24% 9% 34% 23% 21% 17%

Relapse of malignancy remains one of the major causes of death and uncertainty after BMT, with incidence ranging from 40% to 60% based on the aforementioned variables.3 Other mortality risks include donor cells attacking the host in graft-versus-host disease (GVHD) (15%), recurrent systemic and pulmonary infections (15%), multiorgan failure (10%), and secondary malignancy (5%/15%).2-4 The development of acute GVHD (12%/36%) has been shown to signicantly impact quality of life (QOL) after BMT and is highly associated with the long-term development of chronic GVHD (9.1%/44.7%).6,7 The morbidity and mortality associated with transplant signicantly add to patient and caregiver distress, which may be ameliorated through a palliative care (PC) approach.

CAREGIVER BURDEN IN BMTA ROLE FOR PC

The number of informal caregivers in the United States is expected to rise as patients are living longer.8 The degree of social support for oncology patients and their families has been an area of increased interest recently within the BMT population. Bone marrow transplantation caregivers are frequently documented to be female (51%/72.4%), the patients spouse (71%/90%), and with a mean age between 43 and 50 years. Female carers and those with personal health problems have been associated with poorer outcomes.9-12 Although caring for a loved one can be extremely rewarding for many, ignoring the potential for caregiver distress and burden may be leaving out a large piece of the clinical puzzle. Throughout BMT, the patient must rely heavily on these caregivers, which serves as a potential threat to the caregivers social, psychological, and spiritual well-being.9
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A recent study conducted by Morgan13 acknowledged the importance of the patient-partner relationship. The author uses the term dyadic coping to imply that the patients ability to cope with a situation is directly inuenced by how well their caregiver is coping and vice versa. This article looks to recognize the BMT patient and caregiver as a dyad that may suffer together, but also has the potential to grow and impact overall outcomes if cared for appropriately. Caregiver burden encompasses the caregivers potential physiological and psychological distress that can insidiously or rapidly develop in response to the stressful events associated with caring for a patient.14 More recently, there has been a growing interest in the BMT population, as major transplant centers have come to rely heavily on a dependable informal caregiver to allow for risk-reduced early discharge and improved outcomes after BMT.15-17 What makes these caregivers unique from others, including non-BMT cancer caregivers, is the uncertainty and highrisk prole of transplant that immediately follows an already long, aggressive chemotherapy regimen, all the while without guarantee of cure. Patients and their caregivers are constantly clinging to hope: hope of the patient obtaining remission pretransplant, hope of nding a perfect human lymphoctye antigenYmatched donor in AlloBMT, hope that no acute complications ensue immediately after transplantation, hope that the patient engrafts timely and properly, hope that the patient does not develop long-term complications, hope that the patient does not relapse, and nally hope that if transplant is not successful the patient may have quality care and symptom management at the end of life.18 In the past, the acute phase of most BMT and its associated complications occurred in the hospital setting and was managed by the inpatient healthcare team. Today, many transplant centers have begun either implementing shorter inpatient lengths of stay or transitioned to an emphasis on outpatient transplant.16 This has led to an increase in patient self-care responsibilities, as well as a greater demand on the family caregiver to manage acute symptoms, prevent opportunistic infections, provide psychosocial support, perform healthcare-related tasks, and identify complications requiring immediate medical attention.4 These models require a single caregiver who will be able and willing to undergo extensive training and is expected to stay with the patient, frequently at a center far away from their residence.17 Because of the rapid uctuations in medical status, complicated symptoms, and potential for death, BMT patients commonly have prolonged hospitalizations that separate the caregiver from their known environment and sense of security, further increasing their risk for burden. If left untreated, fatigue, physical exhaustion, sleeplessness, deterioration of health, and social isolation may result, which can adversely affect patient outcomes.8,10-14,16,18-23
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Buck and McMillan19 estimate that there are approximately 22.4 to 54 million informal family caregivers of cancer patients in the United States all at an increased risk for caregiver burden; BMT caregivers are among those at risk. Kim and Schulz20 performed a comparative analysis of cancer caregivers versus caregivers of the demented, diabetic, and frail elderly population. Results indicated greater levels of caregiver burden and psychological distress in both the cancer and dementia caregivers in comparison to the diabetic and frail elderly. This was associated with the greater number of hours spent providing care and assisting with more activities of daily living.20 In many instances, BMT caregivers have been found to experience equal, if not higher, levels of anxiety, distress, and depression than their counterparts after transplant, yet these symptoms are often unrecognized and left untreated.12 Fife et al9 identied ve factors that affect caregiver vulnerability during the acute phase of BMT: (1) preexisting stress related to initial cancer diagnosis; (2) the high level of uncertainty associated with the transplant process, especially if treatment is not curative; (3) the struggle to maintain ones sense of personal control over the situation; (4) the major disruption in the caregivers personal life; and (5) the nancial burden and/or a strain on family resources. The burden in this group is twofold: direct stress from the caregiving role and its total imposition on the caregivers preexisting responsibilities. Such stress and distress can be expected to increase over time if not addressed and to be compounded if the patient develops multiple complications requiring multiple hospital admissions.9 Ensuring minimal caregiver burden is a vital investment in one of the most important allies to the healthcare team during the BMT process. The presence of a caregiver has been associated with improved survival at 1 year after transplantation (75%) versus patients without a dedicated caregiver (26%).15 In addition, the increased use of ambulatory BMT models has become a cost-effective and efcient way to manage this patient population without compromising the quality of care.16 Frey et al17 estimated that the use of ambulatory models and primary caregivers in AutoBMT saves approximately $14,000 in direct medical costs, yet nearly 50% of the screened patients were ineligible because of the lack of a caregiver. This emphasizes the fact that these cost-efcient models would not be successful or even possible without the designation of a responsible, willing caregiver.

therapies. These goals are directly applicable to the BMT dyad. Despite the high morbidity and mortality seen in this population, the focus of care in BMT remains curative and referrals to the PC team come late if at all.21 The multiple symptoms exhibited throughout transplant are frequently complex, and poor symptom control has been associated with higher levels of emotional distress for both patients and caregivers.9 Patients may, for example, experience symptoms that include pain, mucositis, nausea and vomiting, lack of nutrition, anorexia, weight loss, GVHD, diarrhea, and transfusion dependence.21 Although the transplant team importantly remains at the forefront of supportive care for their patients, early collaboration with a PC team whose expertise is in symptom management and addressing suffering would seem of benet to the BMT team as well as the patient and family. The PC team can assist the BMT team in addressing the patients physical and emotional symptoms, which may in turn reduce overall caregiver burden and distress. In addition to treating the patients symptoms, the recognition, diagnosis, and treatment of caregiver-specic symptoms to reduce burden are essential. This is an integral part of PC and hospice care. Underscoring the importance of caring for the caregiver, Lederberg25 introduced the concept of the primary caregiver as psychologically a second-order patient. As previously stated, the effects of a patients illness on the caregiver can cause emotional and functional distress at levels equal to or even greater than that of the patients themselves.12 Caregivers of cancer patients frequently feel that they must contain their own emotional responses to the diagnosis of their loved one to be a source of support and strength. Many are directly or indirectly forced to abandon their careers, assume the role of both parents to their children if a spouse is affected, alienate themselves from social support systems, and participate in critical treatment decisions. Clearly, the concept of treating family caregivers psychologically as second-order patients25 can be appropriately applied to the BMT population. Palliative care teams are equipped to provide this much needed care.

INTERVENTIONS TO SUPPORT THE FAMILY CAREGIVER

The presence of caregiver burden in BMT is well documented in the literature,1,4,9-12,14-18,21,22,26 yet actual palliative interventions specic to BMT caregivers remain limited. Use of psychoeducational, supportive, psychotherapeutic, and integrative techniques has repeatedly been demonstrated in various caregiver groups.8 Bone marrow transplant caregivers in multiple studies have consistently identied early, in-depth education on physical and emotional aspects of care as most important to their well-being.9,16-18,21,26 Open and early communication with
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PALLIATIVE CARE IN BMT

The National Consensus Project24 states that the goal of PC is to prevent and relieve suffering and to support the best possible QOL for patients and their families, regardless of the stage of the disease or the need for other Journal of Hospice & Palliative Nursing

patient and caregiver in regard to the peritransplant process, expectations for discharge, long-term goals, and overall prognosis has been shown to decrease tension and foster a trusting relationship with the healthcare team.25 Psychoeducational interventions combine the use of written, group, and individual instruction to provide a thorough understanding of the type of care that is expected in terms of medications, adverse effects, symptoms, psychological support, and procedures to be performed. Implementing this approach early in BMT was found to aid in satisfying the caregivers educational needs and feelings of mastery with the transplant process.8,16 Supportive techniques are used individually and in a group format to create an environment where caregivers feel comfortable discussing their concerns, successes, and barriers with others in a mutual situation. Alternatively, psychotherapy, cognitive behavioral therapy (CBT), and integrative approaches are geared toward developing a trusting, therapeutic relationship with trained professionals rather than with peers.8 Psychotherapists and cognitive behavioral therapists can help the caregiver develop problem-solving skills, reframe thought processes to adapt to acute and chronic changes, and build an arsenal of healthy coping strategies.8 Positive coping strategies in the early phases of BMT have been shown to relieve stress, while the development of negative coping strategies may be harmful to the caregivers well-being. Avoiding the obvious situation they are faced with or trying to change a situation that is most likely irreversible is highly associated with negative adaptation to BMT.9 Implementation of psychotherapy and CBT may be helpful in preventing these poor outcomes. Individual members of the PC or hospice team may be trained in some of these approaches or can initiate earlier referrals when needed. In an attempt to treat both the patient and caregiver in a holistic manner, use of integrative services should be considered as part of the plan of care. Massage therapy has been shown to decrease anxiety, depression, and fatigue in BMT caregivers when compared with healing touch therapy and control groups. Participants in this study felt that receiving undivided attention and having time away from caregiving responsibilities were associated with improvements in positive energy and strength. Although the sample size of this particular study was small (n = 36), the ndings suggest the need for further research in the use of other integrative techniques to relieve both patient and caregiver burden.22

able support services. Winslow23 found that the caregivers of patients with Alzheimer disease enrolled in support groups showed decreased feelings of loneliness, increased reassurance, and lower levels of depression. Despite these potential benets, multiple barriers to use of services remained, including fear of nancial burden and even nding the time to set up appointments and services. Many caregivers voiced feelings of guilt or shame leaving the patient, as well as mistrust toward others providing care. Patients themselves were resistant to accepting in-home care or assistance from those other than the trusted primary caregiver. Although the population with Alzheimer disease signicantly differs from BMT because of the chronic and slowly progressing nature of the disease, similar benets and barriers may be seen between populations and should be considered. Most importantly, this study underscores the importance of a comprehensive assessment of the caregivers strengths and vulnerabilities to develop an individualized plan of care, regardless of patient diagnosis. Addressing specic facilitators and barriers to obtaining both community and hospital-based supportive services can help caregivers access much needed resources.

The Shift From Curative Therapy to PC

During the early phases of diagnosis, the BMT team frequently uses a family-centered approach to care, providing detailed educational information to both the patient and family. Although mortality risk is usually included in these conversations, the focus and energy of the patient unit and BMT team are on cure. Despite the intense level of care the friend or family member is expected to provide to the patient, caregivers are encouraged by the BMT team to maintain as much normalcy and stability in their lives as possible. This sometimes causes internal conict in the caregiver. A cancer diagnosis and BMT in particular represent a major disruption to their stability, and much encouragement and support are needed from the team. Referral to PC is especially important when the BMT has failed, and the goals of care are transitioned from curative therapy to PC. Whereas earlier in the BMT process the focus was on cure with PC as a secondary role, now PC becomes the primary goal. The PC and hospice nurse holds an extremely valuable position in providing supportive care to the patient and family during this physically and emotionally difcult transition period. Of the patients that die of AlloBMT, a large percentage (40%/60%) will be from relapse of the original malignancy.3 Patients and family not only must deal with receiving news of relapse, but also must be prepared to cope with the effects of the progressing primary malignancy superimposed with the effects of transplant. The remainder of patients may obtain
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BARRIERS TO ALLEVIATING CAREGIVER BURDEN

Interventions to prevent or alleviate caregiver burden would be futile if caregivers are unwilling to use avail10 www.jhpn.com

complete remission, and death is usually associated with complications of the transplant as reviewed earlier.27 A thorough understanding of the prognosis of the underlying malignancy as well as complications of BMT may help the PC and hospice nurse anticipate the needs of these patients and to provide better care to the patient and family during the last days of life. It is important to note that, in the cancer population, feelings of loss and grief may start as early as time of diagnosis.28 Losses accumulate over time, and their signicance is specic to the patient and family. In the BMT population specically, anticipatory grief can occur at any point along the roller-coaster journey of the acute and chronic phase, and bereavement can be complicated. Identifying the risk factors associated with a complicated grief and bereavement and incorporating early interventions are an important aspect of PC. The following case report illustrates the role of the PC team in the care of a BMT patient and family throughout the disease trajectory. The case also illustrates how pain is frequently the reason that a PC consultation is sought and how that provides an entry to addressing other PC needs and forming a valuable relationship with the patient unit.

CASE REPORT
Mr L. is a 37-year-old man who had a diagnosis of acute myeloid leukemia. He was admitted for BMT from a match-related donor after receiving high-dose chemotherapy and total body irradiation. He is married with a 3-year-old daughter. He spent 8 years in the US Marines and completed his law degree 2 years prior to his diagnosis. The course of Mr L.s transplant was complicated by pain related to severe mucositis, an admission to the ICU for septic shock, and GVHD of the gut and skin causing frequent episodes of diarrhea and generalized skin breakdown. These multiple symptoms and medical complications caused a signicant amount of distress for both the patient and Mrs L., the primary caregiver. Because of Mr L.s increased pain, the PC team was called to consult and assist with pain management. Palliative care was able to help control Mr L.s pain with the use of intravenous opioids. Through daily visits, PC began developing a relationship with both the patient and his wife. Based on Mr and Mrs L.s needs, additional consults were made for chaplaincy and integrative medicine services. At the time of discharge, Mr L. and his wife did not feel that home-care services were needed. Mrs L. agreed that she would take time off from her job and utilize additional help from family. Shortly after discharge, Mr L. returned multiple times for neutropenic fevers and dehydration. Mrs L. felt highly stressed and very responsible for recognizing when her husband was in need of Journal of Hospice & Palliative Nursing

immediate medical care. The goal of the team, patient, and family remained cure or life prolongation. Mrs L. is very supportive and visits the hospital daily. She is tearful when she speaks about having to care for the patient, their daughter, and herself. While they have strong family support, Mr L. has become more insistent that his wife be the sole caregiver. He voices feelings of embarrassment that he is unable to use the bathroom independently. While Mrs L. feels that home care may be benecial at this time, Mr L. refuses to have strangers helping in his care. Mrs L. feels at fault for Mr L.s rehospitalizations, blaming herself for not ushing the central line properly or not practicing adequate neutropenic precautions to prevent infection. During the most recent admission, Mr L. had a hemorrhagic stroke due to his low platelet count, leading to hemiparesis and aphasia; he was also found to have recurrent disease. The BMT team did not nd Mr L. a suitable candidate for further treatment, and a family meeting, which included PC and the patients primary nurse, was held to discuss the goals of care. After a difcult struggle, the family agreed that it was in Mr L.s best interest to change the focus of care from cure to comfort and QOL. Palliative care, with the assistance of the BMT team and nursing staff, was eventually able to discharge the patient home with hospice where he died shortly after, with his family by his side and his symptoms well controlled. Extensive bereavement services were provided by the hospice social worker. Continued involvement of the BMT team with whom the patient and family had a strong attachment was recognized as an important aspect of his care around minimizing feelings of abandonment when goals of care changed from cure to comfort.

DISCUSSION
This case illustrates the benets of implementing PC early in the transplant phase for both the patient and caregiver. This facilitates the development of a trusting relationship well before the patients clinical course worsened. Palliative care was not only able to assist in controlling Mr L.s symptoms, but also brought in the expertise of other supportive consultative services and assisted in transitions to end-of-life care. While many transplant teams have taken on the role of diagnosing, treating, and supporting the patient and caregiver, the need for PC early in the treatment course is suggested in the literature.21 Figure 1 demonstrates the recommended involvement of PC throughout the trajectory of transplant,29 with integration of PC as early as diagnosis and pretransplant to assist with psychosocial adjustment. Palliative cares role gradually increases with greater symptom burden and psychological distress related to posttransplant and discharge home. Finally, the
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FIGURE 1. Model of PC for the BMT patient.

shift to best supportive care and hospice requires full involvement of the PC and hospice team to ensure maximum quality at the end of life as well as setting up bereavement services for caregivers. Despite what many healthcare providers might assume, emotional distress after a difcult course of caring for a patient is usually not relieved with the patients death and may result in a poor and prolonged bereavement.25 In the setting of high-dose therapy and aggressive treatment strategies, the line between cure and futile medical management remains blurry. Some 24% to 40% of BMT patients will be admitted to the ICU for respiratory failure, sepsis, or multiorgan failure. Because of advances in medical technology, the wide availability of antibiotics, and use of invasive procedures, a range of 24% to 33% will return to the BMT units and may even be discharged home.30 The uctuating levels of psychological, physical, and emotional burden can make patient and family decision making much more difcult. While survival rates have been improving in this population, the multiple toxicities associated with treatment, the need for open and honest communication about course and prognosis, and the psychological burden related to risk of relapse should not be ignored.21 Communication about medical prognosis is essential for the BMT population, yet one study of 95 palliative chemotherapy patients demonstrated that prognosis was discussed in only 39% of cases.21 Similar ndings in a study by Lamont and Siegler31 demonstrated that only 69% of cancer patients had discussed advanced directives; a mere 9% had discussed this with their primary oncologist, while 58% expressed their desire to discuss their wishes with other members of the medical team. Oftentimes, patients and family members rely heavily on the oncologist to maintain their hopes for cure and survival and may re12 www.jhpn.com

quire additional sources of support from PC for their physical, psychosocial, emotional, and spiritual needs. There is a key opportunity for palliative nursing to be utilized and successful in a population that is oftentimes underserved by PC. Introduction of PC and even hospice care early in the disease trajectory has been correlated with improved symptom management and care planning and has not been shown to decrease patient survival or detract from feelings of hope.21 Nursing remains the face of PC at the bedside and at home, representing a source of trust and support for the patient and family unit. First, nurses can ameliorate feelings of burden by simply recognizing the commitment and sacrices the caregiver is making. Oftentimes, just asking how the caregiver is doing, along with keeping them informed and part of treatment decisions, is received with immense appreciation and gratitude.32 The BMT population is a clear example of how the patients and caregivers reliance on one another can directly affect outcomes and how PC team involvement throughout the process can help in managing symptoms and navigating transitions in goals of care. A comprehensive approach to management of this population, as shown in the case study, also illustrates how a PC team can successfully work alongside the primary serviceVdemonstrating collaboration, mutual support, and nonabandonment. Although the literature describing caregiver burden in the BMT population is limited, recognizing the value of the family caregiver as an active part of patient care underscores the need for further research on caregiver burden and its impact in the BMT setting.

References
1. Rizzo JD, Wingard JR, Tichelli A, et al. Recommended screening and preventive practices for long-term survivors after hematopoietic cell transplantation: joint recommendations of the European Group for Blood and Marrow Transplantation, the Center for International Blood and Marrow Transplant Research, and the American Society of Blood and Marrow Transplantation. Biol Blood Marrow Transplant. 2006;12:138-151. 2. Cargo CA, Yates E, Marley C, Piggott S, McMullin MR, Jones FGC. Allogeneic bone marrow transplant in BelfastVan outcome overview of the first 25 years. Ulster Med J. 2008;77(3): 185-190. 3. Goldman JM, Horowitz MM. The International Bone Marrow Transplant Registry. Int J Hematol. 2002;76(suppl 1):393-397. 4. Syrjala KL, Langer SL, Abrams JR. Recovery and long-term function after hematopoietic cell transplantation for leukemia or lymphoma. JAMA. 2004;291(19):2335-2343. 5. Porter DL, Alyea EP, Antin JH, et al. NCI first international workshop on the biology, prevention and treatment of relapse after allogeneic hematopoietic stem cell transplantation: report from the Committee on Treatment of Relapse After Allogeneic Hematopoietic Stem Cell Transplantation. Biol Blood Marrow Transplant. 2010;16(6):709-728. 6. Moon JH, Kim SN, Kang BW, et al. Early onset of acute GVHD indicates worse outcome in terms of severity of chronic GVHD compared with late onset [published online ahead of print March 1, 2010]. Bone Marrow Transplant.
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7. Couriel DR, Saliba RM, Giralt S, et al. Acute and chronic graftversus-host disease after ablative and nonmyeloablative conditioning for allogeneic hematopoietic transplantation. Biol Blood Marrow Transplant. 2004;10:178-185. 8. Honea NJ, Brintnall R, Given B, et al. Putting evidence into practice: nursing assessment and interventions to reduce family caregiver strain and burden. Clin J Oncol Nurs. 2008;12(3): 507-516. 9. Fife BL, Monahan PO, Abonour R, Wood LL, Stump TE. Adaptation of family caregivers during the acute phase of adult BMT. Bone Marrow Transplant. 2009;43:959-966. 10. Langer S, Abrams J, Syrjala K. Caregiver and patient marital satisfaction and affect following hematopoietic stem cell transplantation: a prospective, longitudinal investigation. Psychooncology. 2003;12:239-253. 11. Siston AK, List MA, Daugherty CK, et al. Psychosocial adjustment of patients and caregivers prior to allogeneic bone marrow transplantation. Bone Marrow Transplant. 2001;27: 1181-1188. 12. Bishop MM, Beaumont JL, Hahn EA, et al. Late effects of cancer and hematopoietic stem-cell transplantation on spouses or partners compared with survivors and survivor-matched controls. J Clin Oncol. 2007;25(11):1403-1411. 13. Morgan MA. Considering the patient-partner relationship in cancer care: coping strategies for couples. Clin J Oncol Nurs. 2009; 13(1):65-72. 14. Foxall MJ, Gaston-Johansson F. Burden and health outcomes of family caregivers of hospitalized bone marrow transplant patients. J Adv Nurs. 1996;24(4):915-923. 15. Meehan KR, Fitzmaurice T, Root L, Kimtis E, Patchett L, Hill J. The financial requirements and time commitments of caregivers for autologous stem cell transplant recipients. J Support Oncol. 2006;4(4):187-190. 16. Grimm PM, Zawacki KL, Mock V, Krumm S, Frink BB. Caregiver responses and needs: an ambulatory bone marrow transplant model. Cancer Pract. 2000;8(3):120-128. 17. Frey P, Stinson T, Siston A, et al. Lack of caregivers limits use of outpatient hematopoietic stem cell transplant program. Bone Marrow Transplant. 2002;30:741-748. 18. Fife BL, Fausel CA. Hematopoietic dyscrasias and stem cell/bone marrow transplantation. In: Holland JC, Breitbart WS, Jacobsen PB, Lederberg MS, Loscalzo MJ, McCorkle R, eds. Psycho-Oncology. 2nd ed. New York, NY: Oxford University Press; 2010:191. 19. Buck HG, McMillan SC. The unmet spiritual needs of caregivers

of patients with advanced cancer. J Hosp Palliat Nurs. 2008;10(2): 91-99. 20. Kim Y, Schulz R. Family caregivers strains: comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. J Aging Health. 2008;20(5):483-503. 21. Chung HM, Lyckholm LJ, Smith TJ. Palliative care in BMT. Bone Marrow Transplant. 2009;43:265-273. 22. Rexilius SJ, Mundt CA, Megel ME, Agrawal S. Therapeutic effects of massage therapy and healing touch on caregivers of patients undergoing autologous hematopoietic stem cell transplant. Oncol Nurs Forum. 2002;29(3):E35-E44. 23. Winslow BW. Family caregivers experiences with community services: a qualitative analysis. Public Health Nurs. 2003;20(5): 341-348. 24. National Consensus Project for Quality Palliative Care. What is palliative care? http://www.nationalconsensusproject.org/ WhatIsPC.asp. Accessed August 31, 2010. 25. Lederberg MS. The family of the cancer patient. In: Holland JC, ed Psycho-oncology. 1st ed. New York, NY: Oxford University Press; 1998:981. 26. Roeland E, Mitchell W, Elia G, et al. Symptom control in stem cell transplantation: a multidisciplinary palliative care team approach. J Support Oncol. 2010;8(4):179-183. 27. Larson RA, Negrin RS, Connor RF. General principles of hematopoietic cell transplantation for acute lymphoblastic leukemia in adults. http://www.uptodate.com/online/content/topic.do? topicKey=leukemia/5439&selectedTitle=1%7E150&source= search_result. Accessed June 30, 2010. 28. Lichtenthal WG, Prigerson HG, Kissane DW. Bereavement: a special issue in oncology. In: Holland JC, Breitbart WS, Jacobsen PB, Lederberg MS, Loscalzo MJ, McCorkle R, eds. Psycho-oncology. 2nd ed. New York, NY: Oxford University Press; 2010:537. 29. Ferris F, Balfour HM, Bowen K, et al. A model to guide patient and family care: based on nationally accepted principles and norms of practice. J Pain Symptom Manage. 2002;24:115. 30. Jackson SR, Tweeddale MG, Barnett MJ, et al. Admission of bone marrow transplant recipients to the intensive care unit: outcome, survival and prognostic factors. Bone Marrow Transplant. 1998; 21(7):697-704. 31. Lamont EB, Siegler M. Paradoxes in cancer patients advance care planning. J Palliat Med. 2000;3:27-35. 32. Williams LA. Whatever it takes: informal caregiving dynamics in blood and marrow transplantation. Oncol Nurs Forum. 2007; 34(2):379-387.

For more than 32 additional continuing education articles related to palliative and hospice care in nursing, go to NursingCenter.com\CE.

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