Journal of palliative medicine
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Background: Little is known about how immigration status influences preference for life-extending care (LEC) at the end of life (EoL). Objective: The purpose was to determine how preference for LEC at the EoL for advanced cancer patients varied by Latino ethnicity and immigrant status, and over time between two large cohorts. Methods: Data were derived from two sequential multi-institutional, longitudinal cohort studies of advanced cancer patients, recruited from 2002 to 2008 (coping with cancer I [CwC-1]) and 2010 to 2015 (coping with cancer II [CwC-2]). ⋯ Conclusions: Immigrant status had a strong effect on preference for LEC at the EoL among the more recent cohort of Latino cancer patients. Preference for LEC appears to have increased significantly over time for LI but remained unchanged for US-L. LI may increasingly want LEC near death.
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Background: Cancer patients with advanced disease are confronted with increasingly complex life-prolonging/symptom-relieving treatment decisions. Being informed of treatment benefits and risks is important, but information provision might be suboptimal. Objective: To assess the extent to which patients with incurable cancer feel informed about benefits and risks of possible treatments, and whether this relates to their self-perceived receipt of person-centered care. Methods: Patients with incurable cancer (N = 212) reported the degree to which they felt informed about treatment benefits/risks. Person-centered care was operationalized as "feeling involved in care" and "feeling that preferences were taken into account". (Logistic) regression analyses assessed the relationship between feeling informed and receiving person-centered care, exploring moderating influences of background characteristics. Results: Two-thirds (66%) of patients felt incompletely informed about treatment benefits/risks. ⋯ Background characteristics did not moderate these relationships, but influenced perceptions of received information and person-centered care. Conclusions: Complete information provision about treatment benefits and risks is, according to patients, not commonplace. Yet such information is related to receiving person-centered care. More research into what specific information is preferred, provided, and remembered is warranted, to achieve optimal person-centered care.
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Randomized Controlled Trial
A Qualitative Study of Serious Illness Conversations in Patients with Advanced Cancer.
Background: Conversations with seriously ill patients about their values and goals have been associated with reduced distress, a better quality of life, and goal-concordant care near the end of life. Yet, little is known about how such conversations are conducted. Objective: To characterize the content of serious illness conversations and identify opportunities for improvement. Design: Qualitative analysis of audio-recorded, serious illness conversations using an evidence-based guide and obtained through a cluster randomized controlled trial in an outpatient oncology setting. Setting/Measurements: Clinicians assigned to the intervention arm received training to use the "Serious Illness Conversation Guide" to have a serious illness conversation about values and goals with advanced cancer patients. Conversations were de-identified, transcribed verbatim, and independently coded by two researchers. ⋯ Thematic analyses demonstrated five key themes: (1) supportive dialogue between patients and clinicians; (2) patients' openness to discuss emotionally challenging topics; (3) patients' willingness to articulate preferences regarding life-sustaining treatments; (4) clinicians' difficulty in responding to emotional or ambiguous patient statements; and (5) challenges in discussing prognosis. Conclusions: Data from this exploratory study suggest that seriously ill patients are open to discussing values and goals with their clinician. Yet, clinicians may struggle when disclosing a time-based prognosis and in responding to patients' emotions. Such skills should be a focus for additional training for clinicians caring for seriously ill patients.
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Background: Terminally ill cancer patients' worsening symptom distress and functional impairment may signal disease deterioration, thus facilitating their accurate prognostic awareness (PA). However, the joint roles played by symptom distress and functional impairment in association with cancer patients' accurate PA remain unexplored. Methods: We used hierarchical generalized linear modeling to assess associations between our five identified worsening conjoint symptom-functional states and accurate PA in a convenience sample of 317 terminally ill cancer patients over their last six months. Results: The majority of our participants (70.1%-76.3%) had accurate PA in their last six months. ⋯ Participants with severe or profound symptom distress (states 3 and 5) had a substantially higher likelihood of accurate PA than those with moderate symptom distress (states 2 and 4). Conclusion/Clinical Implications: Terminally ill cancer patients' five distinct conjoint worsening symptom-functional states were differentially associated with their likelihood of accurate PA. Health care professionals should cultivate these patients' accurate PA when they are still free from severe symptom distress and functional impairment, effectively manage symptoms for those suffering from severe/profound symptom distress, and facilitate their psychological-spiritual adjustment to acknowledge their poor prognosis and the accompanying challenges of end-of-life care decisions to maximize quality of life and achieve a good death.
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Background: Physical activity in palliative care patients is closely linked to independence, function, carer burden, prognosis, and quality of life. Changes in physical activity can also be related to service provision needs, including requirements for support and prognosis. ⋯ This latter option is also becoming more viable with the advent of consumer technology driven by the health and exercise industry. Objective: In this article, we highlight our experiences of activity monitoring in palliative care patients as part of telehealth trial. We also highlight the strengths and limitations of activity monitoring in the palliative care population and potential applications. Conclusions: Although the advent of consumer technology for activity measurement makes their use seem attractive in clinical settings for palliative care patients, there are a number of issues that must be considered, in particular the reason for the activity monitoring and associated limitations in the technology.