Person:

Mack, Jennifer

Objective: This qualitative study sought to learn from young adults with sickle cell disease (SCD) about their experience leaving pediatric care and perspective on what makes a successful transition. Methods: Fifteen young adults with SCD who had left pediatric care within the previous five years participated in focus groups led by a trained moderator. Transcripts were analyzed using grounded theory. Results: Four main themes emerged from the analysis: facilitators of transition (meeting the adult provider prior to transfer, knowing what to expect, gradually taking over disease self-management and starting the process early), barriers to transition (negative perceived attitude of adult staff, lack of SCD specific knowledge by both patients and staff, and competing priorities interfering with transition preparation), what young adults wished for in a transition program (opportunities to meet more staff prior to transfer, more information about the differences between pediatric and adult care, learning from a peer who has been through the process, more SCD teaching, and flexibility in transition preparation) and how they define a successful transition (gradually assuming responsibility for self-management of their SCD). Conclusion: Our findings present unique opportunities to learn from young adults with SCD about ways to improve current transition programs.

Context Talking about death can be difficult. Without evidence that end-of-life (EOL) discussions improve patient outcomes, physicians must balance their desire to honor patient autonomy against a concern that EOL discussions may inflict psychological harm.

Objective To determine whether EOL discussions with physicians are associated with fewer aggressive interventions.

Design, Setting, Participants A United States multi-site, prospective, longitudinal cohort study of advanced cancer patients and their informal caregivers (n=332 dyads), September 2002-February 2008. Patients were followed from enrollment to death a median of 4.4 months later. Bereaved caregivers’ psychiatric illness and quality of life (QoL) was assessed a median 6.5 months later.

Main Outcome Measures The primary outcome were aggressive medical care (e.g., ventilation, resuscitation) and hospice in the final week of life. Secondary outcomes included patients’ mental health and caregivers’ bereavement adjustment.

Results 123 of 332 (37.0%) patients reported EOL discussions before baseline. EOL discussions were not associated with higher rates of Major Depressive Disorder (8.3% vs. 5.8; AOR 1.33, 95% CI 0.54-3.32), or more “worry” (6.5 vs. 7.0; p=0.19)). After propensity-score weighted adjustment, EOL discussions were associated with lower rates of ventilation (1.6% vs. 11.0%; AOR 0.26, 95% CI 0.08-0.83), resuscitation (0.8% vs. 6.7%; AOR 0.16, 95% CI 0.03-0.80), ICU admission (4.1 vs. 12.4%; AOR 0.35, 95% CI 0.14-0.90), and earlier hospice enrollment (65.6% vs. 44.5%; AOR 1.58, 95% CI 1.04-2.63). In adjusted analyses, more aggressive medical care was associated with worse patient QoL (6.4 vs. 4.6; F=3.60, p=0.01) and higher risk for Major Depressive Disorder in bereaved caregivers (AOR 3.37, 95% CI 1.12-10.13), while longer hospice stays were associated with better patient QoL (5.6 vs. 6.9; F=3.70, p=0.01). Better patient QoL was associated with better caregiver QoL at follow-up (β=0.20; p=0.001).

Conclusion EOL discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient QoL and worse bereavement adjustment.

BACKGROUND: Research suggests that patients' end-of-life (EOL) care is determined primarily by the medical resources available, and not by patient preferences. The authors examined whether patients' desire for life-extending therapy was associated with their EOL care. METHODS: Coping with Cancer is a multisite, prospective, longitudinal study of patients with advanced cancer. Three hundred one patients were interviewed at baseline and followed until death, a median of 4.5 months later. Multivariate analyses examined the influence of patients' preferences and treatment site on whether patients received intensive care or hospice services in the final week of life. RESULTS: Eighty-three of 301 patients (27.6%) with advanced cancer wanted life-extending therapy at baseline. Patients who understood that their disease was terminal or who reported having EOL discussions with their physicians were less likely to want life-extending care compared with others (23.4% vs 42.6% and 20.7% vs 44.4%, respectively; P≤.003). Patients who were treated at Yale Cancer Center received more intensive care (odds ratio [OR], 3.14; 95% confidence interval [CI], 1.16-8.47) and less hospice services (OR, 0.52; 95% CI, 0.29-0.92) compared with patients who were treated at Parkland Hospital. However, in multivariate analyses that controlled for confounding influences, patients who preferred life-extending care were more likely to receive intensive care (adjusted OR [AOR], 2.91; 95% CI, 1.09-7.72) and were less likely to receive hospice services (AOR, 0.45; 95% CI, 0.26-0.78). Treatment site was not identified as a significant predictor of EOL care. CONCLUSIONS: The treatment preferences of patients with advanced cancer may play a more important role in determining the intensity of medical care received at the EOL than previously recognized. Future research is needed to determine the mechanisms by which patients' preferences for care and treatment site interact to influence EOL care.