Introduction

Palliative care (PC) is a multidisciplinary approach to symptom management, psychosocial and spiritual support, assistance in treatment decision-making for patients and their families, and medical home care for patients facing life-limiting illnesses. PC is established as an essential and integral part of cancer care [1]. Prior studies suggest that benefits of PC include significantly reducing physical symptoms, as well as alleviation of psychosocial distress, improving quality of life, end-of-life quality-care outcomes, cost of care, and improved survival in certain disease entity [2,3,4,5].

PC was originally intended for patients with non-hematological neoplasms, and relatively few studies have assessed palliative care in patients with hematological malignancies. While recent medical advances have led to cure, remission, or long-term disease control for patients with hematologic malignancy, many still portend poor prognoses, and frequently are associated with significant symptom and quality of life burden for patients and families. Patients with hematological cancer are referred to palliative care (PC) services less often than those with solid tumors, [6] despite higher inpatient mortality and shorter interval between first consultation and death [7].

Palliative care needs and challenges in hematological malignancies

One of the major challenges in caring for patients with hematological cancer is deciding when referral to a PC unit should take place. The complexity of individual prognostication, ongoing therapeutic goals of cure, the technical nature and complications of treatment, the intensity of medical care even when approaching end of life, and the speed of change to a terminal event all pose difficulties and hinder referral [8, 9].

To optimize end-of-life care, it is important for clinicians to rethink the PC needs of hematological malignancy patients and to call for development of collaboration between PC and hematology. Hematological cancer patients in the advanced disease phase may have a significant symptom burden resulting from cytopenia and clinical complications of bone marrow failure (e.g., fatigue, dyspnea, bleeding, and infections). In addition, psychological burden is often intense for this group of patients. As demonstrated in a previous study, a high frequency of anxiety and depression was detected by the Hospital Anxiety and Depression Scale in about one-third of acute myeloid leukemia patients at diagnosis [10]. The rapid onset and fluctuating course of hematological malignancies, with frequent life-threatening complications, suggest that anxiety symptoms including post-traumatic stress disorder may be a common accompaniment [11]. Furthermore, terminal hematological cancer patients may suffer from other problems identical to those of the general cancer population, including loss of autonomy and disability [12]. In the final phase of disease, bleeding complications and intensive level of blood products and antimicrobials requirement often prevent the use of palliative home care [13, 14].

The increase in global life expectancy could impose additional challenge in the care of older adults suffering from hematological malignancies. Hematological malignancies are typically a disease of the elderly. This point is illustrated by the median age at diagnosis in many of the most frequent types of blood cancer like myelodysplastic syndromes (MDS) and multiple myeloma (75 years) as well as in acute myeloid leukemia (AML), diffuse large-B cell lymphoma (DLBCL), and chronic lymphocytic leukemia (CLL) (70 years) [15]. Elderly patients generally have multiple medical issues and are treated with multiple pharmaceutical agents. These circumstances contribute to an increased risk of drug interactions and the consequent management of toxicities. Manifestations of common toxicities or severe side-effects may increase both morbidity and mortality in the elderly due to age-associated functional deficits in multiple organ systems. One important factor in the elderly patient is the age-related decline in immunity, including the diminished capacity of response to stimulus such as infection or myelo-suppressive treatments [15]. For instance, acute myeloid leukemia (AML) is mostly a disease of the elderly with a median age at diagnosis of 65–70 years [16]. More than 70% of all AML patients are over the age of 60, and in spite of new treatment strategies being present, the mortality is higher and survival is shorter than in the younger groups. PC collaboration could assist in discussing goals of care, advance care planning, enhance psychosocial support, and facilitate community care of elderly cancer patients [17].

Collaboration between hemato-oncology and palliative care

From current evidence, the historical prioritization of cancer care at the center of palliative medicine did not guarantee that those diagnosed with a hematological malignancy were assured of referral, timely or otherwise. A key concern has been that patients with a hematological malignancy were most likely to end life, amid escalating technology in search of a cure, without access to PC. There are special considerations for hematology patients with regard to PC such as the rapid change to a terminal trajectory, whether to include the administration of blood products during end-of-life care, and management of various infectious complications [14, 18]. However, these challenges can be addressed by a proactive hematology practice with a positive attitude toward the integration of PC. The special care need of hemato-oncology patients compared with solid tumor is summarized in Table 1.

Table 1 Supportive and palliative care (PC) needs of hematological malignancy compared with solid tumor
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Primary PC in the form of excellent communication about treatment options, prognosis, and attention to symptom management can be provided by the primary hematological oncology team when staff members all have appropriate training and skills. Specialty-level PC consultation teams should be available to patients with complex and challenging symptom distress and to patients and families requiring additional psychosocial support. Communication is also challenging for hemato-oncology patients who developed life-threatening complications associated with anticancer treatment (e.g., neutropenic fever, torrential bleeding, and septic shock). Balancing hopes and fears require both honesty and compassion. Hope-worry statements, for instance, “We are hoping for the best, but it would be wise to start planning for the worst. Knowing the full picture now, what is important to you and your loved ones at this time?”, might be helpful at prognosis disclosure in the face of uncertainty. When faced with limitations in therapy and guarded prognosis, open and honest discussions are needed between the hematological oncologist and the patient about the reality of the disease and limitations of treatment. Palliative care team is well placed to support this process, which is often challenging. Goals of care might then be switched from life-prolonging to one focused mostly on comfort, patient centered, and quality of life.

Collaboration between hematology and a PC team has had demonstrated success in symptom management, alleviation of psychosocial burden imposed by hematological cancer and its treatment, discussion of advance care planning, home care provision, enhancement of hospice transfer during end of life, and bereavement support for family members [17, 18]. Even at an advanced stage of disease, patients may still benefit from anticancer treatment (including chemotherapy and adjuvants such as high-dose steroids). As well, patients may have high dependency on blood products and be predisposed to different infectious complications. Therefore, we must ensure good communication among various clinical teams, namely, hematology, PC, microbiology, and infectious diseases, as well as blood bank services. Integration of hemato-oncology and palliative care requires an in-depth understanding of each discipline as well as how providers can work together most effectively. The historical stereotypes of hematologists who press on till late in disease course and palliative care physicians who give up too early are no longer helpful in the era of personalized cancer treatments and comprehensive supportive care. It is important to end the false dichotomy to choose between hemato-oncology and palliative care.

More recognition and research is needed

In a consensus among international experts on the integration of oncology and PC, it was recommended that a 1-month rotation by oncologists in PC is ideal. They believe that a clinical rotation helped oncologists gain knowledge of basic symptom assessment and management, communication and understanding of an appropriate PC referral, and establishment of a cohesive working relationship with the PC team [19]. It was shown in recent publication that a 4-week mandatory PC rotation could benefit hemato-oncology fellows’ ability in symptom assessment, opioid prescription and opioid rotation, communication skills regarding advance care planning and do-not-resuscitate discussion, and coping with stress in facing terminal illness [20].

The lack of evidence-based knowledge and exploration could be another factor restricting palliative care involvement in hematological malignancies on how this should be achieved. When palliative care was first introduced, interventions were largely focused on patients with advanced cancers, particularly those with non-hematological neoplasms [21]. To a lesser extent, palliative care was also aimed at patients with other illnesses such as motor neuron disease [22] and acquired immune deficiency syndrome [23]. As a consequence of the initial target populations for palliative care, most published articles on palliative care report outcomes in patients with non-hematological neoplasms [24]. By contrast, relatively few studies have investigated palliative care in patients with hematological malignancies.

Several studies have found that patients with hematological malignancies tend to receive palliative care late and, therefore, sub-optimally [25, 26]. This situation is unwarranted given that the symptom burden in patients with non-hematological neoplasms and hematological malignancies is essentially equivalent [27]. Moreover, considering the growing evidence supporting the efficacy and cost-effectiveness of palliative care in cancer patients [28, 29] and other non-cancerous conditions [30,31,32], there is no reason to not consider palliative care interventions in this population. However, clear models and templates of integration of hematology and palliative care or services have been few and limited. Furthermore, there are only few research studies focusing on PC in onco-hematology especially randomized clinical trial [33] in comparison to cancer palliative care and other end-stage nonmalignant diseases. In the coming future, oncology and hematology journals should consider special issue or journal section focusing on end-of-life and symptom-directed clinical care [1, 34]. This might strengthen a sense of belonging to a community of hematologists and healthcare professionals with common challenges and dilemmas in managing refractory hematological malignancies [35].

Palliative care model in hemato-oncology

Patient with a hematological malignancy could experience episodes of sudden deterioration related to the treatment or the underlying disease. However, it is not uncommon for patients to recover from episodes of “near-death” deterioration. Therefore, people suffering from hematological malignancy often experience a swift change in their goals of care, leaving little time for planning and preparation for death. A modified palliative care model might be needed in hemato-oncology, where PC is introduced early from the diagnosis of hematological malignancy, provided alongside care of curative or life-prolonging intent, and subsequently lead to death and bereavement care or cure and survivorship care depending on natural disease course [36]. This risk management approach may be the future of palliative care integration in the hematology setting and beyond as advances in medicine lead to more prognostic uncertainty [37]. Integrated care model of PC starting from diagnosis of high-risk hematological malignancy is depicted in Fig. 1.

Fig. 1
figure 1

Integrated supportive and palliative care (PC) model starting from diagnosis of high-risk hematological malignancy

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In developed countries where palliative care is well-recognized, a palliative care member could be embedded as part of the care team. Joint rounds and patient care conferences could be held together. In countries in which PC is not an accredited discipline, the process of obtaining formalized training in palliative hemato-oncology is particularly challenging. Nevertheless, many hemato-oncologists are able to acquire the core skills through workshops, rotations and training programs, and focus their research in this area. Furthermore, it is important for PC units and hospice agencies to reconsider their transfusion support guidelines so that patients with hematologic malignancies can readily benefit from hospice enrollment and facilitate dying in place earlier in the course of their EOL care [38].

Conclusion

Establishment of collaboration would be a mutual learning experience for all involved parties. Tumor biology and anticancer treatment can be learned from hematologists, and knowledge about difficult symptom management and psycho-spiritual care could be gained from the interdisciplinary PC team. The diagnosis and treatment of blood cancers are changing rapidly and unpredictably. The role of physician is changing as well, in response to patient expectations, shifting regulations, and ongoing evolution in the structure of healthcare teams. However, the human experience of serious illness, as well as the importance of the physician’s presence at the bedside, remains unaltered at core. Expertise of PC and hematology meet at their best in taking care of terminally ill hematology cancer patients.

While similar success in collaboration has been demonstrated in both cancer and other non-cancer life-limiting diseases, there is scant work in the area of hematological oncology. As a result, there is an obvious need to call for development, research, and recognition of collaborative care models linking PC and hematology. Hopefully, this article can be a catalyst for debate that will foster a new direction in integration, research, and subspecialty development at the interface of hemato-oncology and palliative care.