Inadequate Illness Understanding and Suboptimal Levels of Advance Care Planning in Patients with Aggressive Lymphoma

Introduction. The prognosis of an aggressive lymphoma can change significantly after disease progression following first line treatment, with the chance of cure changing from likely to unlikely. This sudden shift creates a unique context for illness understanding and advance care planning (ACP). Yet, research on illness understanding and ACP has focused primarily on patients with solid tumors rather than hematologic malignancies, a notable gap given the relationship between ACP and receipt of care consistent with patient preferences. In this study, we examined illness understanding, rates of ACP engagement, and reasons for lack of ACP engagement in patients with recurrent aggressive B-cell lymphomas.

Methods. Patients (n=27, Table 1) with aggressive B-cell lymphomas that progressed after first or second line treatment were recruited from an urban academic medical center. Self-report measures of illness understanding (i.e., aggressiveness, terminality, curability) and ACP (i.e., discussions of care preferences, completion of advance directives) were administered over the telephone by trained study staff. Frequency and descriptive statistics were used to examine sample characteristics, illness understanding, and rates of ACP.

Results. Over two-thirds of the sample described their illness as aggressive (n=18, 69.2%) but less than one-third reporting being terminally ill (n=8, 29.6%) and having incurable disease (n=6, 22.2%).

The majority of the sample had a healthcare proxy (HCP; n=22, 81.5%; Table 2). Reasons for not designating a HCP included that patients were considering whom to choose (n=2, 7.4%), had not thought about it (n=2, 7.4%), and did not know the definition of a HCP (n=1, 3.7%). Two-thirds of the sample (n=17, 65.4%) had not completed a living will. Of those who completed a living will, 22.2% (n=2) selected comfort measures only, 22.2% (n=2) selected limited medical interventions, and 11.1% (n=1) selected no limitations on medical interventions. Almost half of patients who completed a living will (n=4, 44.4%) did not know their documented care preference and 14.5% (n=4) of the total sample did not know the definition of a living will.

Over one-third of patients (n=10, 37%) had not decided about their DNR status and 11.1% (n=3) did not have a DNR order because they wanted resuscitation to be attempted. Reasons for not making a DNR decision included that patients did not know the definition of a DNR order (n=3, 11.1%), had not thought about it (n=3, 11.1%), were considering whether they wanted a DNR order (n=1, 3.7%), and other (n=3, 11.1%). Less than half of the sample (n=12, 44.4%) reported writing down or talking to someone about the care they would like to receive should they become critically ill. Of those patients who discussed their care preferences, only 11.1% (n=3) discussed their preferences with a healthcare provider.

Conclusions. Our findings identify several issues that require potential intervention and validation. Many patients with recurrent aggressive lymphoma do not accurately understand their prognosis. Research identifying the causes of this gap (e.g., information is not provided, information is provided using language the patient cannot understanding, patients' emotions interfere with understanding) will inform the development of targeted interventions to improve patient understanding. Longitudinal research on illness understanding and strategies for improving illness understanding will be particularly important for patients with aggressive lymphoma due to the sudden change in prognosis as the disease progresses.

Additionally, research on strategies to promote discussion of patients' EOL care wishes with their oncologist/care team is needed, particularly in light of evidence that these discussions facilitate receipt of care consistent with patients' preferences. Further, patients with aggressive lymphoma may benefit from basic information on and assistance in completion of a living will and DNR order. Given that most patients with recurrent aggressive lymphoma will die of their disease, our study highlights the need for greater prioritization of and support for patient education on the nature of aggressive lymphoma and completion of advanced directives.

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