Clinical Scorecard: Psychological Issues in Hematopoietic Stem Cell Transplantation: End-of-Life Care and Parental Distress

At a Glance

Key Highlights

• High medical care aggressiveness at end-of-life after HSCT for non-CR acute leukemia, with frequent ICU admissions and mechanical ventilation.
• Parental distress during transition to palliative care post-HSCT is extremely high, with significant emotional, practical, and spiritual challenges.
• Parents often struggle to accept end-of-treatment status, seek continued treatment, and may reject palliative care supports, highlighting the need for early psychosocial interventions.

Guideline-Based Recommendations

Diagnosis

• Identify patients with non-CR acute leukemia undergoing HSCT who have poor prognosis to anticipate end-of-life trajectories.
• Assess parental distress using validated tools such as the Distress Thermometer during transition to palliative care.

Management

• Reinforce advance care planning and goals-of-care discussions throughout HSCT trajectory, especially for patients with unfavorable prognosis.
• Integrate palliative care early during HSCT to support patients and families.
• Provide psychosocial support tailored to parental needs, addressing emotional, practical, and spiritual concerns.

Monitoring & Follow-up

• Monitor indicators of medical care aggressiveness at end-of-life, including ICU admissions, mechanical ventilation, and continuous hospitalization.
• Regularly assess parental distress and coping during transition to palliative care.

Risks

• High intensity of medical interventions at end-of-life may not improve outcomes and can increase patient burden.
• Parental denial and refusal of palliative care supports can impede optimal symptom management and psychosocial care.

Patient & Prescribing Data

Parents of children with oncological/hematological diseases post-unsuccessful HSCT

Significant parental refusal of opioid pain medications and technical aids; need for sensitive communication and education about palliative care benefits.

Clinical Best Practices

• Implement structured advance care planning early in the HSCT process for patients with poor prognosis.
• Provide multidisciplinary psychosocial support to families, including counseling and spiritual care.
• Facilitate open communication between medical staff, patients, and families to address treatment goals and expectations.
• Educate parents on realistic outcomes and benefits of palliative care to reduce denial and improve acceptance.

References

• European Society for Blood and Marrow Transplantation Annual Meeting 2025
• Levine D.R., 2023 - Parental distress in pediatric palliative care
• Nikolskaya N.S. et al., 2020 - Distress Thermometer validation