Palliative care is directed towards symptom control for patients suffering with any terminal illness including cancer. An integral part of this is end of life care. Hematopoietic Cell Transplant (HCT) is associated with a curative intent especially in the allogeneic setting and palliative care discussions are often tricky in these situations. An important aspect is recognizing patient’s and appropriate timing to yield the best results. Early palliative care consultation is now considered standard of care in patients with advanced cancer, especially those undergoing a high-risk transplant. This was associated with improved mood, sense of hope, decreased levels of anxiety during HCT which was sustained for a few months post-transplant. Late involvement of the palliative care team during the terminal phase of illness is associated with higher symptom burden on patients and their families. There are certain identifiers that serve as a guide for palliative care intervention in patients with hematological malignancies or those undergoing a HCT. These may be patient or caregiver, disease or treatment related or psychosocial. An important and overlooked side effect that needs to be addressed is depression and Posttraumatic Stress Disorder (PTSD). To avoid this there should be a shift towards transitioning care to an outpatient setting as soon as safely possible. Advanced care planning is an important aspect of palliative care and the knowledge of its impact in the HCT setting is limited. Lack of completion of such, was associated with a high risk of death and ICU utilization within 14- and 30-days post-transplant, specifically in the case of an allogeneic HCT. There are many barriers identified for the underutilization of this service in the HCT setting with the most important one being the overly optimistic attitude of the HCT physician treating patients undergoing high-risk transplants. To understand this further a HCT physician-based survey revealed that >80% physicians felt that a palliative care consult was associated with a ‘giving up’ attitude. However, there is now growing awareness of this misconception and efforts are being made to bridge this gap in understanding and knowledge.
The ultimate aim of palliative care in patients with cancer is to decrease the suffering associated with their disease and in return provide them with better Quality of Life (QOL) Hospice is an essential part but not synonymous to palliative care, which is an important difference, and understanding of the same is increasing amongst patients and providers . As the average life expectancy is rising, the proportion of patients with cancer is increasing. Given advancements in detection and treatment of cancer, patients are living longer with symptoms secondary to their disease or side effects from treatment. Addressing these symptoms is of utmost importance in maintaining good QOL and in some cases providing a survival benefits .
Palliative care discussions in patients receiving a Hematopoietic Cell Transplant (HCT) are often challenging as this is potentially a curative option for many malignant and non-malignant diseases. The total number of hct is increasing and so is the average age of such candidates. In 2016, >50% of autologous and 30% of allogeneic transplants were in patients >60 years of age . This is possible given improvement in supportive care measures such as better anti emetics and antibiotics to name a few.
Adult HCT, specifically of allogeneic type, is associated with high risk of Graft versus Host Disease (GvHD), reported incidence of chronic GvHD ~40-50%, amongst other complications such as infections, graft failure, late treatment toxicities which can ultimately lead to increased morbidity and mortality . It is in these situations there is a known benefit in addressing the patient's physical symptoms, emotional requirements and psychosocial needs which are essentially the core components of palliative care. Another key role is providing caregiver support, as they always remain underserved. Despite these benefits, their expertise is highly underutilized. In this article we will discuss the importance of an integrated team approach with palliative care and answer a few essential questions.
Palliative care has different roles during the disease and treatment trajectory, with the ultimate goal being comfort. Understanding that, consulting palliative care anytime during the disease course is appropriate. Most recently established standard of care is an early consultation especially in the advanced stages of solid malignancies and this was evaluated in the HCT setting as well [5,6].
Traditionally, palliative care is consulted during the terminal phase of disease or treatment, to discuss grave prognosis and end of life care. This is changing. Pre-transplant consultation, in an outpatient setting, for those undergoing a high risk HCT (Hematologic Cell Transplantation-Comorbidity Index (HCT-CI) of 3 or higher, relapse risk >25%, or mismatched donor transplant) was evaluated. This was associated with improved patient outcomes such as mood and sense of hope along with better coping skills during the whole transplant process and 3 months post-transplant . In one of the first ever reported randomized trial involving 160 HCT patients, 81 received early post-transplant intervention with twice weekly palliative care visits, whereas the other group of 79 received palliative care only if consulted. The intervention group had a smaller QOL loss from baseline at 2 weeks (p=0.045) and improved control of symptoms and mood with lesser anxiety. This benefit was also seen 3 months post-transplant with higher QOL and lesser depressive symptoms .
A decrease in QOL and increased symptoms of depression while admitted for HCT are important predictors of 6-month QOL, hence these need to be managed appropriately . Another study assessing early palliative care starting with the first interaction of the HCT team and any subsequent admissions was associated with a feeling of better preparedness for transplant. This helped alleviate anxiety with improved symptoms .
Based on recent CIBMTR data (Center of International Bone and Marrow Transplant Research) the most common cause of death in a patient after an autologous transplant is disease relapse (69%). The 3 year mortality after a matched related and matched unrelated donor transplant is 58% and 47% respectively . It is at these times patients and their families require additional support. A study looked at this exact scenario and reported that a delay in integration of palliative care and end of life discussions towards the terminal phase of illness leads to a higher symptom burden on both the patient and their families. This is an important gap that needs to be filled .
There are certain identifiers that may serve as a guide for palliative care intervention in patients with hematological malignancies or those undergoing a HCT. These may be patient or caregiver, disease or treatment related or psychosocial. Such triggers were reported by Leblanc et al., and are: HCT patients at the time of hospitalization or at the time of development of GvHD, high symptom burden either chronically or acutely related to treatment (iatrogenic symptoms), patients or families having difficulty coping financially or emotionally with illness or at end of life [12,13]. In a small pilot study, high levels of pre transplant distress (anxiety and depression) was highly predictive of post-transplant distress (p < 0.0001) . There are many scales that can help providers understand patient's symptom burden such as the Edmonton symptom assessment scale, NCCN distress thermometer, FACT-BMT [15,16]. These can be utilized with the understanding that not all were validated in HCT patients. NCCN has also set forth guidelines which are patient and caregiver focused .
HCT is a complex and long process starting from donor identification and disease control and may take months, especially in the allogeneic setting. During this period patients’ physical symptoms, spiritual and emotional requirements, psychosocial and financial needs as well as caregiver support are usually overlooked. This could be due to time constraints during a clinic visit, lack of understanding of the treating provider of these symptoms.
Despite the growing awareness of benefits of palliative care this service is underutilized. One of the important reasons identified is the overly optimistic attitude of the HCT physician treating patients with high risk transplant. The reasons for this are multi factorial. A HCT physician based survey identified a few barriers and an important one was the perception of palliative care as being end of life or associated with the feeling of ‘giving up’ by the patient and their families (>80%). Others were, lack of understanding the role of palliative care by HCT physicians and cultural factors (women HCT physicians and <10 years into practice were more likely to make palliative care referrals) . There is now growing awareness and efforts are being made to bridge this gap between the HCT physicians and palliative care with increased educational activities, seminars and lectures .
Palliative care is not synonymous with hospice and aims at symptom management and patient’s comfort in different phases of HCT. There is a noted benefit for early palliative care involvement and assistance with advance care planning which will eventually lead to decreased ICU admissions and health care utilizations. There are many models for delivery for these services either directly by the HCT team and physicians or directly from the palliative care team. Despite this there is a limited utilization of these services by the HCT team and this gap is to be bridged. Efforts for the same are currently underway. More research needs to be undertaken to identify high risk HCT patients that will benefit the most from palliative care.
I would like to acknowledge the contribution of Prathinav Ramananth Vishnu, student of San Francisco University High School who assisted in editing, data collection and proofreading for the article.
Citation: Gupta R (2019) The WHO, HOW and WHEN of Palliative Care in the Hematopoietic Stem Cell Transplant Setting. J Hosp Palliat Med Care 2: 004.
Copyright: © 2019 Ridhi Gupta, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.