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Florence Nightingale Journal of Nursing logoLink to Florence Nightingale Journal of Nursing
. 2023 Apr 1;31(Suppl 1):59–65. doi: 10.5152/FNJN.2023.23046

Palliative Care in Patients with Hematological Malignancies

Seckin Erdal 1,✉, Elif Naz Arslan 2, Mehmet Sahir Tandoruk 3
PMCID: PMC10911781  PMID: 37162056

Abstract

Palliative care is an attempt to improve the quality of life of patients and their relatives who have lost the chance of a cure. Interventions to improve the quality of life of patients include physical, mental, and psychosocial problems. It is known that symptoms such as pain, fatigue, loss of appetite, and feeling unwell, which often cause deterioration in quality of life, are improved with palliative care support. It is seen that palliative care support, which is mostly recommended in the end-of-life period of patients with solid tumors, is not recommended for patients with hematological malignancies. In fact, patients with hematological malignancies face physical, mental, and economic difficulties due to the intense treatment protocols required for their disease and the side effects of the treatments. Compared to patients with solid tumors, patients with hematological malignancies have a higher frequency of hospitalization and intensive care unit admission. For these reasons, our aim is to define the palliative care needs of patients with hematologic malignancies, understand the barriers to palliative care and end-of-life care, and offer solutions to improve the quality of life and care of patients with hematologic malignancies.

Keywords: End of life, hematological malignancy, palliative care

Introduction

Palliative care is commonly recommended supportive intervention for both patients and their relatives in the end-of-life periods of patients who have lost the chance of cure, especially those with solid tumors. The process of providing palliative care support requires a multidisciplinary approach, not a one-way approach. The World Health Organization has defined palliative care as the early comprehensive evaluation of attempts to improve the quality of life of patients and their relatives, and the elimination of physical, mental, and psychosocial problems (WHO, 2023).

It is known that palliative care does not contribute to the prolongation or shortening of the patient’s life span and is only to relieve the patient during the transition to death. Therefore, in addition to the physical problems seen in patients, it is important to identify and eliminate psychosocial problems early in order to improve the quality of life. It has been shown in many studies that physical problems such as pain, fatigue, loss of appetite, and orofacial difficulties, which often cause deterioration in the quality of life, and mental problems such as feeling bad, anxiety, depression, and post-traumatic stress disorder improve with palliative care support. Studies on symptoms seen during palliative care support are mostly aimed at patients with solid tumors. In a study evaluating the effect of palliative care on symptoms seen in end-of-life patients with solid tumors, it was emphasized that problems such as pain, fatigue, insomnia, and loss of appetite in patients were rapidly resolved/improved with palliative care support (Uysal et al., 2015). It is seen that palliative care support is mostly recommended in the end-of-life period of patients with solid tumors, but rarely in patients with hematological malignancies. Therefore, the post-treatment symptoms and prognosis of patients with hematological malignancies receiving intensive and long-term treatment should be well evaluated.

Hematological malignancies are a group of diseases that have differences in the types of diseases, course of the disease, treatment modalities, and success within its group (El-Jawahri et al., 2020; LeBlanc & El-Jawahri, 2015). Patients with hematological malignancies have different disease findings compared to solid tumors when palliative and end-of-life care needs are evaluated (LeBlanc & El-Jawahri, 2015). Compared to solid tumors, hematological malignancies always have a chance of recovery, even if they are resistant or have relapsed. At the same time, chronic and silent hematological malignancies may exacerbate over time and require treatment (Manitta et al., 2010). Alternative treatment options increase the chance of recovery in resistant and recurrent diseases but cause many symptoms to occur during and after treatment. For these reasons, morbidity, mortality, and long-term deterioration in the quality of life may develop in patients with resistant or recurrent hematological malignancies. In addition to these, many complications and toxicity findings may occur in patients due to radiotherapy and chemotherapy in acute and chronic periods of hematological malignancies. Also, hematopoietic stem cell transplantation and chimeric antigen receptor T-cell therapy, which are used in the treatment of hematological malignancies, cause vital toxicity and complications (Wilkins et al., 2017). A palliative care plan should be established by evaluating the symptoms and toxicity findings that may occur during and after classical or alternative treatments of hematological malignancies. Unfortunately, although many symptoms occur in patients with hematological malignancies, it is seen that this patient group rarely receives palliative care support. Considering that patients with hematological malignancies receive intensive and long-term treatment and experience unpredictable complications/toxicity, it is possible to say that patients need palliative and end-of-life care. In studies on palliative care needs, especially with patients with solid tumors, well-planned palliative care has shown positive results in understanding the disease, coping with the disease, and increasing the quality of life (Howell et al., 2011; Manitta et al., 2010). At the same time, it is necessary to establish a palliative care team consisting of palliative care nurses, physicians, psychologists, oncologists, religious persons, and social volunteers who have training and experience in palliative care (Mollaoglu et al., 2019). For these reasons, an appropriate multidisciplinary approach with experience in palliative care can play an important role in meeting the palliative and end-of-life care needs, managing complex symptoms, managing the disease and end-of-life care, and improving the quality of life of patients with hematologic malignancies.

The purpose of this article is to define the palliative care needs of patients with hematologic malignancies, understand the barriers to palliative care and end-of-life care, and offer solutions to improve the quality of life and care of patients with hematologic malignancies.

Palliative Care Needs of Patients with Hematological Malignancies

Considering that patients with hematological malignancies receive intensive and long-term treatment, we should consider multidimensional palliative care needs. For this reason, it will be appropriate to consider the care needs of patients with hematological malignancies as the order of treatment, life after treatment, and end-of-life period. The palliative care needs of the patients are summarized in Table 1.

Table 1.

Palliative Care Needs in Patients With Hematological Malignancies

During treatment Diagnostic information needs and treatment decision-making process
Stress disorder due to diagnosis
Physical findings related to treatment
Social isolation due to protective isolation
Impairment in quality of life due to disease and treatment side effects
During post-treatment life Physical symptoms (such as fatigue, pain, muscle and joint problems, neuropathy, and signs of graft versus host disease)
Psychological distress (such as anxiety, depression, fear of relapse, and post-traumatic stress disorder)
Neurological and cognitive dysfunction
Financial problems
Sexuality and reproductive problems (infertility)
In the end-of-life period Physical and psychological burnout
Frequent need for hospitalization and intensive care
The need for repeat chemotherapy
Lack of palliative care support offering and plan
High mortality during hospital treatment
Low recommendation for hospitalization in a nursing home
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During Treatment

In addition to the success of hematological malignancy treatments, many unexpected symptoms may occur during treatment (Epstein et al., 2012; LeBlanc et al., 2017). In a cross-sectional study in which 180 patients were examined to understand the symptom burden of patients with hematological malignancies, it was shown that the patients mostly experienced a lack of energy, difficulty sleeping, pain, and dry mouth (Manitta et al., 2011). In another cross-sectional analysis, when patients with hematological malignancies and solid tumors receiving palliative care were compared, while the rates of pain, shortness of breath, nausea, and anorexia were similar, fatigue and lethargy were reported at higher rates in patients with hematological malignancies (Hochman et al., 2018). In another study, it was shown that fatigue affects 80%–90% of patients with acute leukemia, myelodysplastic syndrome, and multiple myeloma (Efficace et al., 2015). In addition, in a study conducted to understand the orofacial symptoms seen in hematological diseases, symptoms such as orofacial petechiae, conjunctival bleeding, epistaxis, and spontaneous or post-traumatic gingival bleeding were determined due to hemostatic disorders that may occur during treatment (Adeyemo et al., 2011). In another study examining the relationship between febrile neutropenia and periodontal inflammation in the oral cavity in patients with hematological malignancies receiving chemotherapy, it was emphasized that periodontitis treatment before chemotherapy may be beneficial as supportive care in preventing oral cavity-related problems in febrile neutropenia that occurs during chemotherapy (Nishi et al., 2022). These results in the studies show that the palliative care needs of the patients are quite high due to both physical and mental symptoms and symptoms that occur during treatment. In some studies, it has been shown that patients with hematopoietic stem cell transplantation experience intense symptoms such as nausea, vomiting, mucositis, fatigue, and diarrhea during the transplantation process, and their quality of life is impaired due to these symptoms (Pidala et al., 2010). In the literature, it has been shown that although the problems that occur due to intensive treatments are temporary, stress and depression are common and affect 30%–60% of patients during treatment (El-Jawahri et al., 2015; Fadul et al., 2008). While it has been stated that patients with leukemia are the most distressed group among all cancer types, patients with acute leukemia and patients with hematopoietic stem cell transplantation have been shown to experience acute and post-traumatic stress disorder due to reasons such as long-term hospitalization and social isolation, starting with diagnosis (Batty et al., 2017; LeBlanch et al., 2017). Based on the results of the study conducted to evaluate the psychological state of the patients, it is seen that the patients experience serious psychological problems during this process and that they need to receive psychological support (Mosher et al., 2011). Studies have shown that even if the hematological malignancies are resistant or relapsed, the disease has a chance of recovery. However, it has been reported that, apart from diagnosis and prognosis, the patient’s acceptance of and adherence to treatment is effective in the healing process of the disease. In a study, it was reported that 31% of patients in the advanced age group diagnosed with AML had a chance of recovery (El-Jawahri et al., 2019). In another study, it was emphasized that personalized care in patients with hematological malignancies should be carefully evaluated for the disease and patient-specific characteristics (22). For these reasons, it is important for patients with hematological malignancies to be informed adequately and illuminatingly about their disease and treatment so that they can make informed decisions.

During Post-Treatment Life

It has been shown in studies that patients who respond positively to treatment struggle with many complications in the early and late period after treatment and their quality of life deteriorates (Mosher et al., 2011; Majhail, 2017; Pidala et al., 2010). In a study examining long-term complications after hematopoietic stem cell transplantation, it was determined that patients had high late-term morbidity and mortality rates, organ-specific complications, late infections, quality of life disorders, psychosocial problems, sexual and fertility concerns, and financial difficulties (Majhail, 2017). The problems that arise are generally psychological problems: fear of recurrence of the disease, post-traumatic stress disorder, fatigue, pain, muscle and joint problems, neuropathy, infertility, cardiomyopathy, and neurocognitive deficiencies (El-Jawahri et al., 2018; Tzelepis et al., 2018). Physical and functional disorders and chronic graft-versus-host disease, especially after allogeneic hematopoietic stem cell transplantation, cause deterioration in the quality of life. In a study evaluating long-term complications after hematopoietic cell transplantation, it was reported that graft-versus-host disease is a complication that requires palliative care (Majhail, 2017). In the same study, organ-specific complications, infections, psychosocial problems, infertility concerns, financial difficulties, problems related to returning to work/school, secondary cancers, and quality of life disorders that occur in the late period after allogeneic hematopoietic stem cell transplantation were shown (Majhail, 2017). In a study examining the symptoms experienced by patients with Hodgkin lymphoma, one of the hematological malignancies, in life after treatment, it was stated that the patients mostly experienced physical symptoms and mood disorders in the long term. In this study, they emphasized that the symptoms experienced by the patients were not related to the prognosis of the disease (Troy et al., 2019). Even if the disease prognosis is good in hematological malignancies, it is understood that the symptoms that occur after treatment require palliative care support. When the literature is evaluated, it is understood that a long-term, patient-centered, multidisciplinary approach should be planned for patients who survived after treatment of patients with hematological malignancies, after hematopoietic stem cell transplantation, and after chimeric antigen receptor T-cell therapy. For these reasons, it may be possible to provide long-term quality care to this patient group by cooperating with transplant centers and institutions providing home care services. However, more research is needed to better understand the physical, mental, and socioeconomic needs of patients who survive after treatment for hematological malignancies and after hematological stem cell transplantation.

In the End-of-Life Period

Similar with this article, literature review supports that needs in the end of life period contains serious physical and mental problems experienced by patients. In a multicenter study to determine the need for home palliative care in patients with advanced hematological malignancies, it was reported that patients with non-curative advanced hematological malignancies experienced more complex physical symptoms and psychosocial difficulties compared to patients with solid tumors. In this study, the number of hospital admissions and therapeutic interventions was also examined. It was determined that 33% of the patients applied to the hospital due to deterioration in general condition and pain. The results of this study show that patients experience many problems during the period of home care (Kaiser et al., 2017). In a cohort study examining the patient-reported results of healthcare use in the last 6 months of life in patients with acute myeloid leukemia receiving active cancer treatment, it was shown that the patient’s symptom burden, psychological distress, and quality of life were increased. In the same study, it was determined that 92.4% of the patients were hospitalized in the last month of their life and 26.9% died in the intensive care unit. In this study, it was also emphasized that patients needed a large number of erythrocyte suspensions and therefore the number of hospitalizations was high (Lowe et al., 2018). In a study on healthcare use and end-of-life care for elderly patients with acute myeloid leukemia, it was found that patients were hospitalized an average of 4.2 times in the end-of-life period and spent an average of 28.3% of their lives in the hospital after diagnosis, and 16.2% of them attended the outpatient clinic. Although 87.9% of these patients died during follow-up, only 16.2% of them received palliative care support (El-Jawahri et al., 2015). When the results of the study are evaluated, it is seen that the patient group with hematological malignancies has a shorter stay in the nursing home, the probability of dying in the hospital is twice as high as the patients with other cancers, and the rate of referral to the nursing home is low. In line with the literature, it is possible to say that planning end-of-life care for patients with hematological malignancies and attempts to improve the quality of care are inevitable.

Possible Barriers to Providing Palliative Care Support in Patients with Hematological Malignancies

When the studies are evaluated, it is seen that the possible obstacles that arise in providing palliative care needs depend on the types and course of hematological malignancies, cultural characteristics, and system-based causes. Possible barriers to providing palliative care support are summarized in Table 2.

Table 2.

Possible Barriers to Provide Palliative Care Needs of Patients with Hematological Malignancies

Types of hematological malignancies and specific causes for their course Diseases requiring intensive treatment (mortality and morbidity)
Uncertainty between palliative and curative therapy
Uncertainty in disease prognosis
Reasons for cultural characteristics Misconceptions about end-of-life care and palliative care
Unwillingness of doctors to involve other care providers in the care of their patients
Limited knowledge of the possible benefits of palliative care
System-related causes Lack of studies on palliative care needs of hematological malignancies
Lack of palliative care specialist and palliative care center
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Causes Specific to the Course and Types of Hematological Malignancies

Side effects and toxicities resulting from the treatment of hematopoietic stem cell transplantation and chimeric antigen receptor T-cell therapies, which are a treatment option in hematological malignancies, are of vital importance. Despite this, they are successful treatment options for this disease group. Although treatment options are successful, patients may experience many symptoms that impair their quality of life. In a systematic review investigating the causes of deterioration in the quality of life in autologous and allogeneic transplant patients, reasons such as graft-versus-host disease, psychological distress, and low social support were found as moderate evidence (Braamse et al., 2012; Wilkins et al., 2017). Despite all the symptoms that arise, hematological malignancies have a good chance of recovery, even if they are resistant or recur. Therefore, the line between choosing curative or palliative care is unclear (Manitta et al., 2010). This makes it difficult to predetermine the palliative care needs of patients with hematological malignancies. Because of unpredictable complications during treatment, a rapid deterioration may occur in the general condition of patients (LeBlanc & El-Jawahri, 2015; McCaughan et al., 2018). This rapid deterioration in the general condition of patients can progress from receiving intensive medical care to the need for hospitalization in the intensive care unit. In an exemplary study to understand the prognostic uncertainty of hematological malignancies, it was shown that 50% of patients admitted to the intensive care unit recovered after being treated in the intensive care unit (Azoulay et al., 2013). In another study, it was emphasized that patients with hematological malignancies often require hospitalization due to intensive and complex treatment, some patients and their relatives feel more secure in the hospital environment and feel insecure in meeting their home care needs (Howell et al., 2017). Studies have shown that palliative care is mostly aimed at the non-curative group of patients with advanced solid tumors (Temel et al., 2010; Zimmermann et al., 2014). When the literature is evaluated, it can be said that there is a traditional thought that palliative care is necessary for patients close to the end of life. Due to this traditional approach, it seems that palliative care is not recommended for patients who have achieved cure and who experience symptoms after treatment. However, the American Society of Clinical Oncology stated that palliative care is often misinterpreted as synonymous with end-of-life care (Smith et al., 2012). For these reasons, more studies are needed to determine the post-treatment and end-of-life care needs of patients with hematological malignancies and to create care models.

Reasons for Cultural Characteristics

In some studies, it has been shown that oncologists caring for patients with hematological malignancies have misperceptions of seeing palliative care as only end-of-life care. In a survey conducted among physicians, it was emphasized that 52% of physicians stated that palliative care is synonymous with end-of-life care (El-Jawahri et al., 2018). In the same survey, 84% of both oncologists and transplant physicians stated that palliative patient care is required at all stages of the disease, including end-of-life care (El-Jawahri et al., 2018). However, in another study, it was shown that unrealistic expectations of oncologists caring for patients with hematological malignancies hinder good planning of end-of-life care (Odejide et al., 2016). The results of the study reveal that oncologists have limited knowledge about the possible benefits of palliative care and that explanations about end-of-life may cause deterioration in their relationships with their patients. These reasons constitute an important cultural barrier to suggesting palliative care (El-Jawahri et al., 2018; Hui et al., 2015; Prod’homme et al., 2018). When the literature is evaluated, the emergence of the need for palliative care in the last stages of the disease course in patients with hematological malignancies and the high probability of hematologists to offer treatment that can achieve a cure instead of offering palliative care constitute an important obstacle to providing palliative care.

System-Related Causes

The need for palliative care of hematological malignancies has been ignored since most of the studies on palliative care are directed toward patients with advanced solid tumors (Temel et al., 2010; Zimmermann et al., 2014). Therefore, the lack of data supporting the role of palliative care in patients with hematological malignancies has been a major barrier to palliative care. In a randomized clinical study evaluating the effect of palliative care during and after hematopoietic stem cell transplantation, it was emphasized that patients experienced anxiety and depression, their quality of life deteriorated, and palliative care reduced symptoms (El-Jawahri et al., 2017). These results reveal the palliative care needs of patients with hematological malignancies. Despite the palliative care needs of patients with hematological malignancies, unfortunately, there are insufficient care providers to meet palliative care needs. In a study conducted to understand the lack of palliative medicine physician workforce, it was emphasized that the number of palliative physicians was insufficient and they worked too much (Lupu & Force, 2010). The result of this study shows that if the demand for palliative care increases, it will be difficult for many patients to receive palliative care due to both insufficient palliative care specialist and lack of infrastructure.

Palliative Care Recommendations for Patients with Hematological Malignancies

Studies show the benefits of palliative care despite the obstacles to the need for palliative care in patients with hematological malignancies. In a study, the psychological effects of palliative care were evaluated in patients who underwent hematopoietic stem cell transplantation, and improvement in depression and post-traumatic stress syndrome findings was reported in the patients who were followed up (El-Jawahri et al., 2017). In another study on pre-transplant supportive and palliative care counseling in hematopoietic stem cell transplant patients, it was reported that detecting the need for palliative care in the early period for this high-risk patient group has the potential to improve (Loggers et al., 2016). In studies on orofacial and oral cavity health in the literature, it has been emphasized that there are problems such as petechiae in the oral cavity, bleeding in the gingiva, and periodontal inflammation due to intensive treatment of patients with hematological malignancies and that early detection of these problems may be beneficial as supportive care in preventing oral cavity-related problems (Adeyemo et al., 2011; Nishi et al., 2022). Another prospective randomized study demonstrated the effectiveness of palliative care in improving patient and caregiver quality of life and psychosocial outcomes. According to the results of a study involving 160 patients, patients visited by palliative care clinicians reported improvement in their quality of life, reduction in symptom burden, and clinically significant improvement in depression and anxiety symptoms (El-Jawahri et al., 2016). The data of studies on this subject clearly emphasize the possible benefits of palliative care support in improving the quality of care and life of patients and their relatives with hematological malignancies.

In addition, a study titled “Palliative Care Services from Past to Present” discussed and emphasized that palliative care should be designed according to the individual wishes and needs of each patient and his or her family. The same study emphasized the importance of ensuring continuity of care between institutions such as hospitals, emergency services, nursing homes, home care, and schools, as well as the continuity and scope of palliative care (Mollaoglu et al., 2019).

It is clear that barriers to palliative care delivery span many disciplines. For this reason, the proposed solutions for effective palliative care encompass many disciplines. These solutions, providing a comprehensive palliative care service integrated into the health care system, funding care and medicine, establishing experienced, trained, and sufficient professional teams, increasing awareness of palliative care through written and visual media, and establishing national palliative care associations are essential to providing effective palliative care.

Footnotes

Conclusion and Recommendations In summary, it is a fact that patients with hematological malignancies need palliative care throughout the whole process, starting from the moment they are diagnosed with the disease, during treatment, during the post-treatment life cycle, and throughout the end-of-life period. Although there are disease-specific, cultural, and system-based barriers to the implementation of palliative care, it is possible to develop viable palliative care models. Given the variability of hematological malignancies, emerging palliative care models need to be planned and implemented in accordance with the individualized needs of patients and disease prognosis. Further studies on the development of effective palliative care for the disease group experiencing unexpected symptoms such as hematological malignancy may increase the effectiveness of future palliative care of patients with hematological malignancies.

Peer-review: Externally peer-reviewed.

Author Contributions: Concept – S.E., E.N.A., M.S.T.; Design – S.E., E.N.A., M.S.T.; Literature Review – S.E., E.N.A., M.S.T.; Writing – S.E.; Other – S.E., E.N.A., M.S.T.

Declaration of Interests: The authors have no conflict of interest to declare.

Funding: The authors declared that this study has received no financial support.

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