In the Netherlands, people with an incurable disease often do not receive the care they want in their last phase of life. Palliative care is not used or used too late.
This is the conclusion of palliative medicine doctor at the LUMC Manon Boddaert in her thesis Quality Palliative Care For All – Want it! – Towards death, while alive. She obtained her PhD on 15 March at Leiden University.
Boddaert examined the care claims of more than 43,000 adults who died with or from cancer. More than a third of this group underwent inappropriate care in the last month of life, such as hospital admissions or visits to the emergency room, or died in hospital. However, patients who received palliative care before the last month of life were five times less likely to receive this unwanted care. Because the vast majority of patients want to spend the last phase of life at home, and certainly not die in hospital. That is why patients and care providers must record palliative care agreements in a timely manner in an (electronically available) individual care plan. In this way, patients retain their sense of autonomy and control over care, and it means that caregivers are able to arrange the coordination and continuity of the desired care.
Unfortunately, according to Boddaert, the prevailing predominantly biomedical oriented healthcare is still too focused exclusively on healing. Rooted as this attitude is in a culture of non-giving up and of emotional reluctance to talk about worsening of the prognosis and death, it therefore remains ‘a challenge’ to provide palliative care ‘structurally’. Moreover, limited interdisciplinary cooperation and incorrectly adjusted financial incentives do not make matters any better.
Not that nothing is happening: specialized teams for palliative care are now available in almost all hospitals, but referrals to these teams are, Boddaert shows, consistently low. The teams that function best work proactively, partly because they more often have palliative care outpatient clinics and participate in multidisciplinary consultations of other departments.
Integration of high-quality palliative care in all domains of care is therefore urgently needed, says Boddaert. Especially now that about 75 percent of people in developing countries will die from life-threatening and life-limiting diseases, such as cancer, dementia, obstructive pulmonary disease, heart disease and neurodegenerative diseases.