C J Wulffraat1
1ijsselland ziekenhuis - capelle aan den ijssel - Netherlands (The)
In the Netherlands today, there is a growing group of elderly patients with cardiac diseases who will not undergo cardiac surgical intervention. Cardiac surgery can technically be performed in fragile, older patients, but it is difficult for the individual patient to weigh the risks and benefits of such major surgery. A palliative approach is needed from the moment of deciding that there will be no intervention, since these patients are then confronted with a life limiting disease. Knowledge and cooperation from multi-disciplinary care professionals, who are involved in care for this patient category, is needed to develop a care pathway that supports these patients in adapting to a life limiting disease.
The method of action research was chosen. Eleven patients, and one relative, with this specific cardiac condition were interviewed (semi structured). Two multidisciplinary heart teams gave input through patient assessments. Focus sessions with local cardiologists, NP's, GP’s and homecare nurses provided a multi-faceted view on the concept of the care pathway. A care pathway was designed and implemented. Before discharge there is a shared decision on the treatment plan. Weekly home visits from a heart failure nurse with expertise in symptom recognition and relief are planned in the first month after discharge. This includes advanced care planning and, if necessary, continuing visits. A digital two-way patient file provides communication between home care and the heart failure clinic. At discharge the GP is informed by telephone and on paper and a home visit is planned.
At the time of the shared decision-making, patients rate honesty and expertise the highest. The cardiologists use hard data for decision-making, however, the widely used EuroSCORE does not cover this patient category. At discharge there was poor communication between care professionals, particularly with regards to symptom recognition and relief. Symptoms such as tiredness, fluid retention and weakness are experienced daily. There is a fear of acute, severe symptoms that often return at night, such as dyspnoea, chest pain and the feeling of suffocating/ dying. In the first 18 months 83 patients were included in the pathway, 23 improved, 28 still have regular visits. Communication via the digital two way patient file is highly valued. Furthermore 32 patients died, 22 at home, 4 in a hospice and 4 in hospital, 2 places of death are still unclear. Re-admission data and data on symptom relief is currently being assessed.
Inclusion of frailty scores such as ISAR and KATZ ADL can provide a better patient assessment. Poor communication at discharge leads to inadequate symptom recognition and relief. The loss of mobility, due to symptoms and unpredictability of the disease and fear of returning symptoms can be addressed by a palliative approach. Since the start of the care pathway only 12,5% of the included patients died in hospital.