Changes in Care Goals and Treatment Orders Around the Occurrence of Health Problems and Hospital Transfers in Dementia: A Prospective Study

Objectives: To explore changes in care goals and treatment orders around the occurrence of pneumonia and intake problems, and whether hospitalization is in line with earlier agreed-upon do-not-hospitalize orders. Design: Data were collected as part of the Dutch End of Life in Dementia study (2007–2011), a longitudinal observational study with up to 3.5 years of follow-up. Setting: Long-term care facilities (N = 28) in the Netherlands. Participants: Newly admitted nursing home patients (N = 372) in various stages of dementia. Measurements: Semiannually, physicians completed questionnaires about care goals and treatment orders, and they continuously registered episodes of pneumonia, intake problems and hospitalization. We report on changes in care goals and treatment orders during follow-up in relation to the developing of pneumonia and intake problems and on hospitalization and reasons for hospitalization. Results: The proportion of patients with palliative care goals and do-not-treat orders rose during follow-up, especially before death. Treatment orders most frequently referred to resuscitation and hospitalization (do-not order increased from 73% to 92%, and from 28% to 76%, respectively). The proportions of patients with a palliative care goal and do-not-treat orders were similar after developing pneumonia, but increased after intake problems. During follow-up, 46 patients were hospitalized one or more times. Hospitalization occurred despite a do-not-hospitalize order in 21% of decisions. The most frequently reported reason for hospitalization was a fracture, especially in patients with a do-not-hospitalize order. Conclusion: Care plans, including global care goals (predominantly palliative care goals), are made soon after admission, and specific treatment orders are agreed upon in more detail when the condition of the patient worsens. Establishing care plans shortly after nursing home admission may help to prevent burdensome treatment.