Palliative Care Special Interest Group
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Mission Statement and Charter
To promote the delivery of high-quality patient and family-centered care that optimizes the quality of life of patients undergoing hematopoietic cell transplantation. The delivery of such care is the product of research, education and clinical care management.
Members of the ASBMT SIG
The ASBMT Palliative Care SIG is comprised of patients and their representatives, ethicists and providers who support patients and family members before, during, and after a transplant (including but not limited to hematologists, oncologists, transplant physicians, palliative care physicians, psychologists, nursing specialists, physician and nursing assistants, and pastoral care). Members of the Palliative Care SIG serve as liaisons to sister societies that share a common interest in the palliative care of hematology-oncology patients including, but not limited to, the American Society for Hematology (ASH), the American Society for Clinical Oncology (ASCO) and the American Academy of Hospice and Palliative Medicine (AAHPM).
Background and Philosophy
The Palliative Care SIG recognize that all patients under the care of a hematologist-oncologist benefit from discussions that support complex decision making and advance care planning, quality of life (QOL) and palliative care (PC) needs with each member of their medical team. The SIG will focus on attainable goals meeting the needs of transplant patients and their families. At the same time, the SIG recognizes that many of the PC concepts that are integral to the care of transplant patients are best addressed as early in the course of a patient’s medical care as possible, involve providers who care for these patients starting at the time of diagnosis, and continue long after the transplant procedure to support the long-term needs of transplant survivors. For this reason, the SIG has identified long-term goals and questions broader in nature than those raised in the hematopoietic cell transplant (HCT) setting, but complementary to transplant-specific issues. It is the belief of the SIG that these long-term initiatives will ultimately help all patients who receive care for life-threatening hematologic/oncologic disorders. Furthermore, the SIG recognizes that the long-term goals may require continuous refinement as progress continues.
To promote the delivery of high-quality patient and family-centered care, the SIG has identified the following immediate needs and approaches to achieve these goals in preparation for and delivery of transplant care:
- Research Questions
- Explore how patients’ goals and values impact their perception of illness and wellness and their decision making to undergo transplantation.
- Determine the importance of patients’ symptoms (physical and psychological) and approaches to symptom management during the course of a patient’s treatment.
- Explore healthcare providers’ (mis)perceptions of PC.
- Assess and manage prognostic uncertainty in the development of approaches for individualized patient care.
- Explore the timing and process of advanced care planning (ACP) to ensure the delivery of care consistent with patient/family values and goals.
- Define the scope of “primary PC” and “specialty PC”.
- Define the essential elements of high-quality PC and its delivery.
- Evaluate optimal health care delivery models that successfully integrate multidisciplinary care.
- Identify programs that currently address the PC needs of patients and families with respect to: clinical research; education of patients and providers; availability and engagement of support care services; engagement of multidisciplinary providers; patient-reported outcomes, and caregiver support programs.
- Determine the magnitude of the gap between programs that currently have integrated PC programs and those who do not (how large the gap [percent of transplant programs] between medical teams that have successfully implemented and practice PC daily, to teams that do not have any PC services available).
- Determine whether existing end-of-life guidelines for hematology-oncology meet the needs of patients undergoing transplantation; propose transplant-specific metrics to implement, follow, measure (e.g., advanced directive [AD] at time of change of disease status). Use “near misses” as one possible endpoint to consider.
- Define the optimal infrastructure (for example, social networks) to support the needs of transplant survivors.
- Develop guidelines for long-term medical follow-up that includes the anticipation of medical issues arising as a consequence of transplantation. For pediatric patients, anticipated issues include, but are not limited, to growth and/or gonadal failure, and mild cognitive impairment.
- Data Collection
- To gain information with which to begin to address the research questions outlined above, the Palliative Care SIG will conduct a survey(s) of patients, family members, transplant physicians, PC providers, and providers involved in counseling and treating patients. The SIG will work closely with the National Marrow Donor Program (NMDP) Health Services Research Program to create a survey instrument that will complement that which has been developed by the NMDP. The SIG will engage transplant centers in a pilot study of patients and their caregivers at the time of transplantation, at time-points after HCT that coincide with routine post-transplantation follow-up, during and after crises, and during bereavement.
- The SIG will explore options to fund surveys.
- The SIG will report the findings of the survey and write guidelines and a position paper on the results of its research.
- An education program for patients, family members, and providers will be developed based on the results of the survey. A more in-depth understanding of patient/family/provider needs, and optimal ways to deliver the care, will enable the SIG to develop guidelines for the optimal delivery of PC in the transplant setting.
Long-Term Goals: Concepts that Extend Beyond HCT
In 5 years, the SIG will have produced:
- Accepted, published guidelines
- Priority agenda for patient-centered outcomes research
- Implementation plan
The SIG has identified the following long-term goals:
- Determine how to introduce PC as early as is feasible into a patient’s care plan (i.e., as soon after diagnosis as possible).
- Coordinate our activities with those at the state medical society level to improve advanced care planning.
- Review and define areas that have been identified by the IOM in “Dying in America” as high priority to translate to transplantation.
- Understand the referral patterns of patients with life-threatening diseases to transplant centers that facilitate PC discussion early in the process of a transplant; we need to be the leaders to jump start this for the general hematology-oncology community
- Define the impact of PC on health resource utilization.
- Improve the transplant experience for patients and their families as a result of improved symptom control, prognostic understanding and enhanced communication.