Identification of Patients with COPD with a Poor Prognosis and Implementation of Proactive Palliative Care

Proactive palliative care is not very common for patients with Chronic Obstructive Pulmonary Disease (COPD). Important barriers in the provision of proactive palliative care for patients with COPD are: the identification of patients who can benefit from proactive care and the organization of proactive palliative care. Based on recent literature a set of indicators is developed to identify patients hospitalized for acute exacerbation COPD (AECOPD) who are at risk for post-discharge mortality. Once identified a multi disciplinary approach to palliative care with access to a specialized palliative care team will be offered. The study is divided into an indicator study and an intervention study. We expect the set of indicators to be indicative of predicting readmission within 8 weeks and/or death within 1 year for patients hospitalized for AECOPD. We also expect that proactive palliative care for patients with COPD will: increase the quality of life of these patients, decrease the level of overburdening of their caregivers, decrease the number and length of acute hospital admissions and ICU admissions, prolong survival, and decrease the amount of patients that die in the ICU.

The study consists of an indicator study and an intervention study.

1. Indicator study

We expect that the set of indicators will have discriminative power to predict readmission within 8 weeks and/or death within 1 year for patients hospitalized for AECOPD .

2. Intervention study

We expect that proactive palliative care for patients with COPD will: increase the quality of life of these patients, decrease the level of overburdening of their caretakers, decrease the number and length of acute hospital admissions, prolong survival, and decrease the amount of patients that die in the ICU.

The patients and their main caregiver will be followed at baseline (during hospital admission), and thereafter every 3 month until the end of the trial at 18 months by administering questionnaires (for patients: SGRQ, McGill, HADS and illness understanding; for main caregivers: EDIZ, HADS and illness understanding). In addition, retrospectively the researchers extract data from the medical records of the patients at the end of the trial over the complete trial period. They will look for date, number and length of unexpected hospital admissions, date, number and length of unexpected ICU admissions, the choices of Advance Care Planning (ACP), place of death and length of survival.

The investigational product is a behavioral intervention. In the intervention hospitals, members of the specialized palliative care teams will receive training in implementation of palliative care for patients with COPD. The training will be given by palliative care professionals of the UMC St. Radboud in Nijmegen and will take place in the three month before start of the controlled trial. It consists of two consecutive meetings of each three hours. The following topics will be discussed:

· Discussion of end of life aspects with patient and family;

· Creating a patient-tailored supportive care plan;

· Learning to anticipate on illness- and dying scenarios;

· Transfer of care to lung specialist and general practitioner (GP);

· Performing the supportive care plan in cooperation with the lung specialist.
During the controlled trial patients in the intervention hospitals who are assigned for palliative care will meet with a member of the palliative care team within 1 week after enrolment and at least monthly thereafter in the outpatients setting until the end of the trial or death. The main caregiver of the patient will be asked to be present at those meetings. Guidelines for the palliative care meetings in the ambulatory setting are adapted from the general guidelines palliative care in the Netherlands.