Using the Serious Illness Conversation Guide (SICG) in Patients with Hematological Malignancies As a Tool to Address Their Perspectives on Palliative Care

Introduction

Early involvement by palliative care (PC) has been shown to positively affect the physical and psychological wellbeing of patients with hematological malignancies. Despite this knowledge, PC involvement is rare in this patient population and if present, often occurs too late. Many barriers to the integration of palliative care have been proposed in the literature, including illness-specific, cultural and systems barriers. Moving knowledge into practice is a complex process dependent on many variables. The field of knowledge translation (KT) makes use of conceptual frameworks to better understand the influence and relationship between these variables to improve the implementation of knowledge into practice. Understanding key stakeholder’s, which include hematologists and patients, is an important step in KT. Many studies address physician’s perspective, but a rare few have explored patient perspectives on palliative care.

Methods

We are conducting a prospective, mixed method, study assessing the Serious Illness Conversation Guide (SICG) in patients with blood cancers identified at risk of dying in the next 12 months . The study was conducted at a university-affiliated tertiary cancer center (Segal Cancer Center in Montreal Canada). 12 patients agreed to participate in the completed qualitative component of the study which involved face to face, semi-structured interviews two to four weeks following administration of the SICG. Interviews were conducted individually, audio-recorded, transcribed verbatim, and analyzed by three reviewers using thematic analysis.

Results

Participants (n=12) had a mean age of 68 [42-84]; 66.7% (n = 8) identified as male and 33.3% (n = 4) as female; 75% (n = 9) were Caucasian, 16.7% (n = 2) North African and 8.3% (n = 1) Black; 50% (n = 6) had acute leukemia, 25% (n = 3) lymphoma/CLL, 16.7% ( n = 2) MDS and 8.3% (n = 1) multiple myeloma.

Themes identified relating to PC were: 1) thoughts on mortality 2) perspectives on palliative care, 3) perspectives on medical aid in dying (MAID) and 4) fear of abandonment. Most patients have thought of their death and seem aware of their unpredictable prognosis. What scared them most, even those that have accepted their mortality, is not the fact that they will die but the fear of not knowing how they will die (symptoms, pain, suffering). None of the patients expressing this fear addressed it with either their hematologist or PC provider. Interestingly, patients expressed the need for their treating physician to validate their impending death. Misconceptions relating to PC were common. One patient described it as “quiet euthanasia”. There were many negative associations to PC including associations with imminent death, suffering and loss of quality of life. The few patients who had positive opinions of PC had previous direct or indirect contact with PC. MAID was seen more positively than PC. It was described, especially by those with misconceptions of PC, as a more preferable way to die associated with less suffering. Finally, patients expressed the desire to not be abandoned by their hematologist if PC was involved.

Conclusion

The SICG facilitated the discussion of difficult topics such as death and PC. The insight gained in understanding patient’s perspectives on mortality and PC will help address the barriers identified and develop effective interventions to facilitate the early involvement of PC in the care of patients with hematologic malignancies and hopefully bridge the KT gap.